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Re: Re: Swelling ankles/legs/feet

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Posted
Posted

so maybe i am not imagining the swelling could be related to whatever neuro

is happening? and it's just not your basic edema? elevating doesn't help

me. and you are right the duiretics just dehydrate. makes some sense that

the muscles unable to send fluid up/out. so far the doctors i have shared

this with haven't thought much of it, i guess that's why just order

duiretic.

maybe this new neuro will see it this summer and he will connect the dots.

as i mentioned in another post, this neuro has seen me only in my best

months, cooler months. will be interesting to see what he thinks or sees

what happens in the summer,heat months.

thanks for your input

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

> Marsha

> According to Dr. Valenstein people with PLS have feet and ankle

> swelling as the disease progresses...same deal as HSP in the the

> muscles are so tight around the veins that they don't allow the veins

> to send the fluid up and out. He said diuretis simply dehydrate the

> rest of your body and you will still have swollen feet. That was

> experience. His suggestion was to elevate your feet above your

> heart. As I was saying that didn't work He was tapping his finger on

> my knee saying I wasn't willing to give up the hours required to be

> in that position so the swelling could go down. Ha he knows me

> doesn't he?

> I also got another swelling whammy. out-of-control adrenal

> hyperplasia sends you into a critical adrenal insufficiency and

> causes more swelling in the feet and ankles.

> The therapist gave me a suggestion that works IF you have the right

> devices. Lay on your back say on the couch and exercise your feet

> above you...with a spring board or rubber bands. If you do this one

> get ready to run to the pot as soon as you sit up. It comes off the

> ankles and quickly hits the bladder.

> Hope it helps/

> Eva

>

>

>>

>> Hi all, Sorry I haven't been around posting much lately. Busy with

>> work although that shouldn't be an excuse.

>>

>> I saw my neuro recently and he ordered another set of Brain and

>> Cervical MRI's for possible MS. This possible MS has been the

> issue

>> for little over two years. Only this new neuro has taken time to

> look

>> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

>> show if anything.

>>

>> I really want them to show something just so I can have answers.

>> Whether that be MS, FSP, PLS or something else.

>>

>> Anyway, I have major problems in the heat and humidity, i.e.

> symptoms

>> increase, intensify etc... Another thing that happens in the

>> heat/humidity is my ankles, feet swell really bad. My legs feel

>> swollen although they won't look like they are. Elevating doesn't

>> help. The cold temps my legs get stiff and feel difficult to move

> or

>> get going. Yet i don't swell in cooler or colder temps. Seems only

> in

>> the summer months/heat.

>>

>> No doc has ever been able to determine why i swell in the

>> summer/heat. Last year i was given diuretics which maybe helped a

>> little but not much.

>>

>> I was reading on the SP Foundation site about HSP effecting feet.

>> Something about feet will feel cold, feet/legs will swell due to

>> muscle contractions not able to push things where should be, so

>> fluids accumulate.

>>

>> Often my feet will feel cold at least to my brain but they really

>> aren't. Or they will be sweating but freezing to the touch. Or too

>> they feel cold to the touch and brain yes yeppers their cold. My

>> feet can be cold when I am hot, or hot when I am cold.

>>

>> So wondering if the swelling i tend to only get in the summer heat

>> could be related to the HSP/FSP if indeed this is what I have? Or

> am

>> I barking up the wrong tree? Oh I have had circulation, heart

>> disease etc... checked and I am a bill of health heart wise. Was

>> told my leg cramps, were not due to circulation issues as that is

>> fine.

>>

>> anyone have problems with feet/ankles, and feeling like legs are

>> swollen but in the summer heat not when it is cold?

>>

>> Oh if the MRI's come back with no lesions and he says its not MS, I

>> plan on talking more with him on the HSP or PLS issue. I am having

>> or have had actually many episodes of neck stiffness, and spasms,

> so

>> not sure how that would fit in either. Also having episodes where

>> feels like chest is being crushed (sorta like where the bra band

>> would be). It goes away but can last for hours. Again I know my

>> heart is ok from all the testing I had a few months back. So this

>> feels more like some kind of spasms in the ribcage area not heart

>> related.

>>

>> thanks in advance.

>>

>> marfla

>> orlando fl

>>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

so maybe i am not imagining the swelling could be related to whatever neuro

is happening? and it's just not your basic edema? elevating doesn't help

me. and you are right the duiretics just dehydrate. makes some sense that

the muscles unable to send fluid up/out. so far the doctors i have shared

this with haven't thought much of it, i guess that's why just order

duiretic.

maybe this new neuro will see it this summer and he will connect the dots.

as i mentioned in another post, this neuro has seen me only in my best

months, cooler months. will be interesting to see what he thinks or sees

what happens in the summer,heat months.

thanks for your input

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

> Marsha

> According to Dr. Valenstein people with PLS have feet and ankle

> swelling as the disease progresses...same deal as HSP in the the

> muscles are so tight around the veins that they don't allow the veins

> to send the fluid up and out. He said diuretis simply dehydrate the

> rest of your body and you will still have swollen feet. That was

> experience. His suggestion was to elevate your feet above your

> heart. As I was saying that didn't work He was tapping his finger on

> my knee saying I wasn't willing to give up the hours required to be

> in that position so the swelling could go down. Ha he knows me

> doesn't he?

> I also got another swelling whammy. out-of-control adrenal

> hyperplasia sends you into a critical adrenal insufficiency and

> causes more swelling in the feet and ankles.

> The therapist gave me a suggestion that works IF you have the right

> devices. Lay on your back say on the couch and exercise your feet

> above you...with a spring board or rubber bands. If you do this one

> get ready to run to the pot as soon as you sit up. It comes off the

> ankles and quickly hits the bladder.

> Hope it helps/

> Eva

>

>

>>

>> Hi all, Sorry I haven't been around posting much lately. Busy with

>> work although that shouldn't be an excuse.

>>

>> I saw my neuro recently and he ordered another set of Brain and

>> Cervical MRI's for possible MS. This possible MS has been the

> issue

>> for little over two years. Only this new neuro has taken time to

> look

>> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

>> show if anything.

>>

>> I really want them to show something just so I can have answers.

>> Whether that be MS, FSP, PLS or something else.

>>

>> Anyway, I have major problems in the heat and humidity, i.e.

> symptoms

>> increase, intensify etc... Another thing that happens in the

>> heat/humidity is my ankles, feet swell really bad. My legs feel

>> swollen although they won't look like they are. Elevating doesn't

>> help. The cold temps my legs get stiff and feel difficult to move

> or

>> get going. Yet i don't swell in cooler or colder temps. Seems only

> in

>> the summer months/heat.

>>

>> No doc has ever been able to determine why i swell in the

>> summer/heat. Last year i was given diuretics which maybe helped a

>> little but not much.

>>

>> I was reading on the SP Foundation site about HSP effecting feet.

>> Something about feet will feel cold, feet/legs will swell due to

>> muscle contractions not able to push things where should be, so

>> fluids accumulate.

>>

>> Often my feet will feel cold at least to my brain but they really

>> aren't. Or they will be sweating but freezing to the touch. Or too

>> they feel cold to the touch and brain yes yeppers their cold. My

>> feet can be cold when I am hot, or hot when I am cold.

>>

>> So wondering if the swelling i tend to only get in the summer heat

>> could be related to the HSP/FSP if indeed this is what I have? Or

> am

>> I barking up the wrong tree? Oh I have had circulation, heart

>> disease etc... checked and I am a bill of health heart wise. Was

>> told my leg cramps, were not due to circulation issues as that is

>> fine.

>>

>> anyone have problems with feet/ankles, and feeling like legs are

>> swollen but in the summer heat not when it is cold?

>>

>> Oh if the MRI's come back with no lesions and he says its not MS, I

>> plan on talking more with him on the HSP or PLS issue. I am having

>> or have had actually many episodes of neck stiffness, and spasms,

> so

>> not sure how that would fit in either. Also having episodes where

>> feels like chest is being crushed (sorta like where the bra band

>> would be). It goes away but can last for hours. Again I know my

>> heart is ok from all the testing I had a few months back. So this

>> feels more like some kind of spasms in the ribcage area not heart

>> related.

>>

>> thanks in advance.

>>

>> marfla

>> orlando fl

>>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

so maybe i am not imagining the swelling could be related to whatever neuro

is happening? and it's just not your basic edema? elevating doesn't help

me. and you are right the duiretics just dehydrate. makes some sense that

the muscles unable to send fluid up/out. so far the doctors i have shared

this with haven't thought much of it, i guess that's why just order

duiretic.

maybe this new neuro will see it this summer and he will connect the dots.

as i mentioned in another post, this neuro has seen me only in my best

months, cooler months. will be interesting to see what he thinks or sees

what happens in the summer,heat months.

thanks for your input

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

> Marsha

> According to Dr. Valenstein people with PLS have feet and ankle

> swelling as the disease progresses...same deal as HSP in the the

> muscles are so tight around the veins that they don't allow the veins

> to send the fluid up and out. He said diuretis simply dehydrate the

> rest of your body and you will still have swollen feet. That was

> experience. His suggestion was to elevate your feet above your

> heart. As I was saying that didn't work He was tapping his finger on

> my knee saying I wasn't willing to give up the hours required to be

> in that position so the swelling could go down. Ha he knows me

> doesn't he?

> I also got another swelling whammy. out-of-control adrenal

> hyperplasia sends you into a critical adrenal insufficiency and

> causes more swelling in the feet and ankles.

> The therapist gave me a suggestion that works IF you have the right

> devices. Lay on your back say on the couch and exercise your feet

> above you...with a spring board or rubber bands. If you do this one

> get ready to run to the pot as soon as you sit up. It comes off the

> ankles and quickly hits the bladder.

> Hope it helps/

> Eva

>

>

>>

>> Hi all, Sorry I haven't been around posting much lately. Busy with

>> work although that shouldn't be an excuse.

>>

>> I saw my neuro recently and he ordered another set of Brain and

>> Cervical MRI's for possible MS. This possible MS has been the

> issue

>> for little over two years. Only this new neuro has taken time to

> look

>> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

>> show if anything.

>>

>> I really want them to show something just so I can have answers.

>> Whether that be MS, FSP, PLS or something else.

>>

>> Anyway, I have major problems in the heat and humidity, i.e.

> symptoms

>> increase, intensify etc... Another thing that happens in the

>> heat/humidity is my ankles, feet swell really bad. My legs feel

>> swollen although they won't look like they are. Elevating doesn't

>> help. The cold temps my legs get stiff and feel difficult to move

> or

>> get going. Yet i don't swell in cooler or colder temps. Seems only

> in

>> the summer months/heat.

>>

>> No doc has ever been able to determine why i swell in the

>> summer/heat. Last year i was given diuretics which maybe helped a

>> little but not much.

>>

>> I was reading on the SP Foundation site about HSP effecting feet.

>> Something about feet will feel cold, feet/legs will swell due to

>> muscle contractions not able to push things where should be, so

>> fluids accumulate.

>>

>> Often my feet will feel cold at least to my brain but they really

>> aren't. Or they will be sweating but freezing to the touch. Or too

>> they feel cold to the touch and brain yes yeppers their cold. My

>> feet can be cold when I am hot, or hot when I am cold.

>>

>> So wondering if the swelling i tend to only get in the summer heat

>> could be related to the HSP/FSP if indeed this is what I have? Or

> am

>> I barking up the wrong tree? Oh I have had circulation, heart

>> disease etc... checked and I am a bill of health heart wise. Was

>> told my leg cramps, were not due to circulation issues as that is

>> fine.

>>

>> anyone have problems with feet/ankles, and feeling like legs are

>> swollen but in the summer heat not when it is cold?

>>

>> Oh if the MRI's come back with no lesions and he says its not MS, I

>> plan on talking more with him on the HSP or PLS issue. I am having

>> or have had actually many episodes of neck stiffness, and spasms,

> so

>> not sure how that would fit in either. Also having episodes where

>> feels like chest is being crushed (sorta like where the bra band

>> would be). It goes away but can last for hours. Again I know my

>> heart is ok from all the testing I had a few months back. So this

>> feels more like some kind of spasms in the ribcage area not heart

>> related.

>>

>> thanks in advance.

>>

>> marfla

>> orlando fl

>>

>

>

>

>

>

>

>

>

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Share on other sites
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Guest guest

Posted
Posted

You should try compression hose for the leg swelling. They are a double layer

nylon knee highs. The inner stocking is a lighter compression than the outer,

but makes getting the outer one easier to get on. You can get them from any

medical supply company and most insurance will pay for them with an MD Rx. Danny

Marfla marfla04@...> wrote: so maybe i am not imagining the

swelling could be related to whatever neuro

is happening? and it's just not your basic edema? elevating doesn't help

me. and you are right the duiretics just dehydrate. makes some sense that

the muscles unable to send fluid up/out. so far the doctors i have shared

this with haven't thought much of it, i guess that's why just order

duiretic.

maybe this new neuro will see it this summer and he will connect the dots.

as i mentioned in another post, this neuro has seen me only in my best

months, cooler months. will be interesting to see what he thinks or sees

what happens in the summer,heat months.

thanks for your input

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

> Marsha

> According to Dr. Valenstein people with PLS have feet and ankle

> swelling as the disease progresses...same deal as HSP in the the

> muscles are so tight around the veins that they don't allow the veins

> to send the fluid up and out. He said diuretis simply dehydrate the

> rest of your body and you will still have swollen feet. That was

> experience. His suggestion was to elevate your feet above your

> heart. As I was saying that didn't work He was tapping his finger on

> my knee saying I wasn't willing to give up the hours required to be

> in that position so the swelling could go down. Ha he knows me

> doesn't he?

> I also got another swelling whammy. out-of-control adrenal

> hyperplasia sends you into a critical adrenal insufficiency and

> causes more swelling in the feet and ankles.

> The therapist gave me a suggestion that works IF you have the right

> devices. Lay on your back say on the couch and exercise your feet

> above you...with a spring board or rubber bands. If you do this one

> get ready to run to the pot as soon as you sit up. It comes off the

> ankles and quickly hits the bladder.

> Hope it helps/

> Eva

>

>

>>

>> Hi all, Sorry I haven't been around posting much lately. Busy with

>> work although that shouldn't be an excuse.

>>

>> I saw my neuro recently and he ordered another set of Brain and

>> Cervical MRI's for possible MS. This possible MS has been the

> issue

>> for little over two years. Only this new neuro has taken time to

> look

>> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

>> show if anything.

>>

>> I really want them to show something just so I can have answers.

>> Whether that be MS, FSP, PLS or something else.

>>

>> Anyway, I have major problems in the heat and humidity, i.e.

> symptoms

>> increase, intensify etc... Another thing that happens in the

>> heat/humidity is my ankles, feet swell really bad. My legs feel

>> swollen although they won't look like they are. Elevating doesn't

>> help. The cold temps my legs get stiff and feel difficult to move

> or

>> get going. Yet i don't swell in cooler or colder temps. Seems only

> in

>> the summer months/heat.

>>

>> No doc has ever been able to determine why i swell in the

>> summer/heat. Last year i was given diuretics which maybe helped a

>> little but not much.

>>

>> I was reading on the SP Foundation site about HSP effecting feet.

>> Something about feet will feel cold, feet/legs will swell due to

>> muscle contractions not able to push things where should be, so

>> fluids accumulate.

>>

>> Often my feet will feel cold at least to my brain but they really

>> aren't. Or they will be sweating but freezing to the touch. Or too

>> they feel cold to the touch and brain yes yeppers their cold. My

>> feet can be cold when I am hot, or hot when I am cold.

>>

>> So wondering if the swelling i tend to only get in the summer heat

>> could be related to the HSP/FSP if indeed this is what I have? Or

> am

>> I barking up the wrong tree? Oh I have had circulation, heart

>> disease etc... checked and I am a bill of health heart wise. Was

>> told my leg cramps, were not due to circulation issues as that is

>> fine.

>>

>> anyone have problems with feet/ankles, and feeling like legs are

>> swollen but in the summer heat not when it is cold?

>>

>> Oh if the MRI's come back with no lesions and he says its not MS, I

>> plan on talking more with him on the HSP or PLS issue. I am having

>> or have had actually many episodes of neck stiffness, and spasms,

> so

>> not sure how that would fit in either. Also having episodes where

>> feels like chest is being crushed (sorta like where the bra band

>> would be). It goes away but can last for hours. Again I know my

>> heart is ok from all the testing I had a few months back. So this

>> feels more like some kind of spasms in the ribcage area not heart

>> related.

>>

>> thanks in advance.

>>

>> marfla

>> orlando fl

>>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

You should try compression hose for the leg swelling. They are a double layer

nylon knee highs. The inner stocking is a lighter compression than the outer,

but makes getting the outer one easier to get on. You can get them from any

medical supply company and most insurance will pay for them with an MD Rx. Danny

Marfla marfla04@...> wrote: so maybe i am not imagining the

swelling could be related to whatever neuro

is happening? and it's just not your basic edema? elevating doesn't help

me. and you are right the duiretics just dehydrate. makes some sense that

the muscles unable to send fluid up/out. so far the doctors i have shared

this with haven't thought much of it, i guess that's why just order

duiretic.

maybe this new neuro will see it this summer and he will connect the dots.

as i mentioned in another post, this neuro has seen me only in my best

months, cooler months. will be interesting to see what he thinks or sees

what happens in the summer,heat months.

thanks for your input

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

> Marsha

> According to Dr. Valenstein people with PLS have feet and ankle

> swelling as the disease progresses...same deal as HSP in the the

> muscles are so tight around the veins that they don't allow the veins

> to send the fluid up and out. He said diuretis simply dehydrate the

> rest of your body and you will still have swollen feet. That was

> experience. His suggestion was to elevate your feet above your

> heart. As I was saying that didn't work He was tapping his finger on

> my knee saying I wasn't willing to give up the hours required to be

> in that position so the swelling could go down. Ha he knows me

> doesn't he?

> I also got another swelling whammy. out-of-control adrenal

> hyperplasia sends you into a critical adrenal insufficiency and

> causes more swelling in the feet and ankles.

> The therapist gave me a suggestion that works IF you have the right

> devices. Lay on your back say on the couch and exercise your feet

> above you...with a spring board or rubber bands. If you do this one

> get ready to run to the pot as soon as you sit up. It comes off the

> ankles and quickly hits the bladder.

> Hope it helps/

> Eva

>

>

>>

>> Hi all, Sorry I haven't been around posting much lately. Busy with

>> work although that shouldn't be an excuse.

>>

>> I saw my neuro recently and he ordered another set of Brain and

>> Cervical MRI's for possible MS. This possible MS has been the

> issue

>> for little over two years. Only this new neuro has taken time to

> look

>> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

>> show if anything.

>>

>> I really want them to show something just so I can have answers.

>> Whether that be MS, FSP, PLS or something else.

>>

>> Anyway, I have major problems in the heat and humidity, i.e.

> symptoms

>> increase, intensify etc... Another thing that happens in the

>> heat/humidity is my ankles, feet swell really bad. My legs feel

>> swollen although they won't look like they are. Elevating doesn't

>> help. The cold temps my legs get stiff and feel difficult to move

> or

>> get going. Yet i don't swell in cooler or colder temps. Seems only

> in

>> the summer months/heat.

>>

>> No doc has ever been able to determine why i swell in the

>> summer/heat. Last year i was given diuretics which maybe helped a

>> little but not much.

>>

>> I was reading on the SP Foundation site about HSP effecting feet.

>> Something about feet will feel cold, feet/legs will swell due to

>> muscle contractions not able to push things where should be, so

>> fluids accumulate.

>>

>> Often my feet will feel cold at least to my brain but they really

>> aren't. Or they will be sweating but freezing to the touch. Or too

>> they feel cold to the touch and brain yes yeppers their cold. My

>> feet can be cold when I am hot, or hot when I am cold.

>>

>> So wondering if the swelling i tend to only get in the summer heat

>> could be related to the HSP/FSP if indeed this is what I have? Or

> am

>> I barking up the wrong tree? Oh I have had circulation, heart

>> disease etc... checked and I am a bill of health heart wise. Was

>> told my leg cramps, were not due to circulation issues as that is

>> fine.

>>

>> anyone have problems with feet/ankles, and feeling like legs are

>> swollen but in the summer heat not when it is cold?

>>

>> Oh if the MRI's come back with no lesions and he says its not MS, I

>> plan on talking more with him on the HSP or PLS issue. I am having

>> or have had actually many episodes of neck stiffness, and spasms,

> so

>> not sure how that would fit in either. Also having episodes where

>> feels like chest is being crushed (sorta like where the bra band

>> would be). It goes away but can last for hours. Again I know my

>> heart is ok from all the testing I had a few months back. So this

>> feels more like some kind of spasms in the ribcage area not heart

>> related.

>>

>> thanks in advance.

>>

>> marfla

>> orlando fl

>>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

You should try compression hose for the leg swelling. They are a double layer

nylon knee highs. The inner stocking is a lighter compression than the outer,

but makes getting the outer one easier to get on. You can get them from any

medical supply company and most insurance will pay for them with an MD Rx. Danny

Marfla marfla04@...> wrote: so maybe i am not imagining the

swelling could be related to whatever neuro

is happening? and it's just not your basic edema? elevating doesn't help

me. and you are right the duiretics just dehydrate. makes some sense that

the muscles unable to send fluid up/out. so far the doctors i have shared

this with haven't thought much of it, i guess that's why just order

duiretic.

maybe this new neuro will see it this summer and he will connect the dots.

as i mentioned in another post, this neuro has seen me only in my best

months, cooler months. will be interesting to see what he thinks or sees

what happens in the summer,heat months.

thanks for your input

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

> Marsha

> According to Dr. Valenstein people with PLS have feet and ankle

> swelling as the disease progresses...same deal as HSP in the the

> muscles are so tight around the veins that they don't allow the veins

> to send the fluid up and out. He said diuretis simply dehydrate the

> rest of your body and you will still have swollen feet. That was

> experience. His suggestion was to elevate your feet above your

> heart. As I was saying that didn't work He was tapping his finger on

> my knee saying I wasn't willing to give up the hours required to be

> in that position so the swelling could go down. Ha he knows me

> doesn't he?

> I also got another swelling whammy. out-of-control adrenal

> hyperplasia sends you into a critical adrenal insufficiency and

> causes more swelling in the feet and ankles.

> The therapist gave me a suggestion that works IF you have the right

> devices. Lay on your back say on the couch and exercise your feet

> above you...with a spring board or rubber bands. If you do this one

> get ready to run to the pot as soon as you sit up. It comes off the

> ankles and quickly hits the bladder.

> Hope it helps/

> Eva

>

>

>>

>> Hi all, Sorry I haven't been around posting much lately. Busy with

>> work although that shouldn't be an excuse.

>>

>> I saw my neuro recently and he ordered another set of Brain and

>> Cervical MRI's for possible MS. This possible MS has been the

> issue

>> for little over two years. Only this new neuro has taken time to

> look

>> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

>> show if anything.

>>

>> I really want them to show something just so I can have answers.

>> Whether that be MS, FSP, PLS or something else.

>>

>> Anyway, I have major problems in the heat and humidity, i.e.

> symptoms

>> increase, intensify etc... Another thing that happens in the

>> heat/humidity is my ankles, feet swell really bad. My legs feel

>> swollen although they won't look like they are. Elevating doesn't

>> help. The cold temps my legs get stiff and feel difficult to move

> or

>> get going. Yet i don't swell in cooler or colder temps. Seems only

> in

>> the summer months/heat.

>>

>> No doc has ever been able to determine why i swell in the

>> summer/heat. Last year i was given diuretics which maybe helped a

>> little but not much.

>>

>> I was reading on the SP Foundation site about HSP effecting feet.

>> Something about feet will feel cold, feet/legs will swell due to

>> muscle contractions not able to push things where should be, so

>> fluids accumulate.

>>

>> Often my feet will feel cold at least to my brain but they really

>> aren't. Or they will be sweating but freezing to the touch. Or too

>> they feel cold to the touch and brain yes yeppers their cold. My

>> feet can be cold when I am hot, or hot when I am cold.

>>

>> So wondering if the swelling i tend to only get in the summer heat

>> could be related to the HSP/FSP if indeed this is what I have? Or

> am

>> I barking up the wrong tree? Oh I have had circulation, heart

>> disease etc... checked and I am a bill of health heart wise. Was

>> told my leg cramps, were not due to circulation issues as that is

>> fine.

>>

>> anyone have problems with feet/ankles, and feeling like legs are

>> swollen but in the summer heat not when it is cold?

>>

>> Oh if the MRI's come back with no lesions and he says its not MS, I

>> plan on talking more with him on the HSP or PLS issue. I am having

>> or have had actually many episodes of neck stiffness, and spasms,

> so

>> not sure how that would fit in either. Also having episodes where

>> feels like chest is being crushed (sorta like where the bra band

>> would be). It goes away but can last for hours. Again I know my

>> heart is ok from all the testing I had a few months back. So this

>> feels more like some kind of spasms in the ribcage area not heart

>> related.

>>

>> thanks in advance.

>>

>> marfla

>> orlando fl

>>

>

>

>

>

>

>

>

>

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Posted
Posted

thank danny.

i have thought about compression hose. however, i am allergic to panty hose,

and even if these are made out of different materials, i have such a problem

wearing anything tight. i wear clothes a size too big as i can't handle

anything tight anywhere. even anklet socks and shoes bother me.

another thing it seems to me at least in my illogical m ind if you wear knee

high compression hose then you would even up having a severe indentations

below the knee. like when i wear ankle socks they dib into my skin and even

leave small cuts in the summer at times. wouldn't compression knee highs do

the same?

the though of wearing knee highs esp compression hose makesmy body shutter

and cringe. but i guess i may have to one day for the swelling.

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

>

>

> > Marsha

> > According to Dr. Valenstein people with PLS have feet and ankle

> > swelling as the disease progresses...same deal as HSP in the the

> > muscles are so tight around the veins that they don't allow the veins

> > to send the fluid up and out. He said diuretis simply dehydrate the

> > rest of your body and you will still have swollen feet. That was

> > experience. His suggestion was to elevate your feet above your

> > heart. As I was saying that didn't work He was tapping his finger on

> > my knee saying I wasn't willing to give up the hours required to be

> > in that position so the swelling could go down. Ha he knows me

> > doesn't he?

> > I also got another swelling whammy. out-of-control adrenal

> > hyperplasia sends you into a critical adrenal insufficiency and

> > causes more swelling in the feet and ankles.

> > The therapist gave me a suggestion that works IF you have the right

> > devices. Lay on your back say on the couch and exercise your feet

> > above you...with a spring board or rubber bands. If you do this one

> > get ready to run to the pot as soon as you sit up. It comes off the

> > ankles and quickly hits the bladder.

> > Hope it helps/

> > Eva

> >

> >

> >>

> >> Hi all, Sorry I haven't been around posting much lately. Busy with

> >> work although that shouldn't be an excuse.

> >>

> >> I saw my neuro recently and he ordered another set of Brain and

> >> Cervical MRI's for possible MS. This possible MS has been the

> > issue

> >> for little over two years. Only this new neuro has taken time to

> > look

> >> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

> >> show if anything.

> >>

> >> I really want them to show something just so I can have answers.

> >> Whether that be MS, FSP, PLS or something else.

> >>

> >> Anyway, I have major problems in the heat and humidity, i.e.

> > symptoms

> >> increase, intensify etc... Another thing that happens in the

> >> heat/humidity is my ankles, feet swell really bad. My legs feel

> >> swollen although they won't look like they are. Elevating doesn't

> >> help. The cold temps my legs get stiff and feel difficult to move

> > or

> >> get going. Yet i don't swell in cooler or colder temps. Seems only

> > in

> >> the summer months/heat.

> >>

> >> No doc has ever been able to determine why i swell in the

> >> summer/heat. Last year i was given diuretics which maybe helped a

> >> little but not much.

> >>

> >> I was reading on the SP Foundation site about HSP effecting feet.

> >> Something about feet will feel cold, feet/legs will swell due to

> >> muscle contractions not able to push things where should be, so

> >> fluids accumulate.

> >>

> >> Often my feet will feel cold at least to my brain but they really

> >> aren't. Or they will be sweating but freezing to the touch. Or too

> >> they feel cold to the touch and brain yes yeppers their cold. My

> >> feet can be cold when I am hot, or hot when I am cold.

> >>

> >> So wondering if the swelling i tend to only get in the summer heat

> >> could be related to the HSP/FSP if indeed this is what I have? Or

> > am

> >> I barking up the wrong tree? Oh I have had circulation, heart

> >> disease etc... checked and I am a bill of health heart wise. Was

> >> told my leg cramps, were not due to circulation issues as that is

> >> fine.

> >>

> >> anyone have problems with feet/ankles, and feeling like legs are

> >> swollen but in the summer heat not when it is cold?

> >>

> >> Oh if the MRI's come back with no lesions and he says its not MS, I

> >> plan on talking more with him on the HSP or PLS issue. I am having

> >> or have had actually many episodes of neck stiffness, and spasms,

> > so

> >> not sure how that would fit in either. Also having episodes where

> >> feels like chest is being crushed (sorta like where the bra band

> >> would be). It goes away but can last for hours. Again I know my

> >> heart is ok from all the testing I had a few months back. So this

> >> feels more like some kind of spasms in the ribcage area not heart

> >> related.

> >>

> >> thanks in advance.

> >>

> >> marfla

> >> orlando fl

> >>

> >

> >

> >

> >

> >

> >

> >

> >

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Posted
Posted

thank danny.

i have thought about compression hose. however, i am allergic to panty hose,

and even if these are made out of different materials, i have such a problem

wearing anything tight. i wear clothes a size too big as i can't handle

anything tight anywhere. even anklet socks and shoes bother me.

another thing it seems to me at least in my illogical m ind if you wear knee

high compression hose then you would even up having a severe indentations

below the knee. like when i wear ankle socks they dib into my skin and even

leave small cuts in the summer at times. wouldn't compression knee highs do

the same?

the though of wearing knee highs esp compression hose makesmy body shutter

and cringe. but i guess i may have to one day for the swelling.

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

>

>

> > Marsha

> > According to Dr. Valenstein people with PLS have feet and ankle

> > swelling as the disease progresses...same deal as HSP in the the

> > muscles are so tight around the veins that they don't allow the veins

> > to send the fluid up and out. He said diuretis simply dehydrate the

> > rest of your body and you will still have swollen feet. That was

> > experience. His suggestion was to elevate your feet above your

> > heart. As I was saying that didn't work He was tapping his finger on

> > my knee saying I wasn't willing to give up the hours required to be

> > in that position so the swelling could go down. Ha he knows me

> > doesn't he?

> > I also got another swelling whammy. out-of-control adrenal

> > hyperplasia sends you into a critical adrenal insufficiency and

> > causes more swelling in the feet and ankles.

> > The therapist gave me a suggestion that works IF you have the right

> > devices. Lay on your back say on the couch and exercise your feet

> > above you...with a spring board or rubber bands. If you do this one

> > get ready to run to the pot as soon as you sit up. It comes off the

> > ankles and quickly hits the bladder.

> > Hope it helps/

> > Eva

> >

> >

> >>

> >> Hi all, Sorry I haven't been around posting much lately. Busy with

> >> work although that shouldn't be an excuse.

> >>

> >> I saw my neuro recently and he ordered another set of Brain and

> >> Cervical MRI's for possible MS. This possible MS has been the

> > issue

> >> for little over two years. Only this new neuro has taken time to

> > look

> >> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

> >> show if anything.

> >>

> >> I really want them to show something just so I can have answers.

> >> Whether that be MS, FSP, PLS or something else.

> >>

> >> Anyway, I have major problems in the heat and humidity, i.e.

> > symptoms

> >> increase, intensify etc... Another thing that happens in the

> >> heat/humidity is my ankles, feet swell really bad. My legs feel

> >> swollen although they won't look like they are. Elevating doesn't

> >> help. The cold temps my legs get stiff and feel difficult to move

> > or

> >> get going. Yet i don't swell in cooler or colder temps. Seems only

> > in

> >> the summer months/heat.

> >>

> >> No doc has ever been able to determine why i swell in the

> >> summer/heat. Last year i was given diuretics which maybe helped a

> >> little but not much.

> >>

> >> I was reading on the SP Foundation site about HSP effecting feet.

> >> Something about feet will feel cold, feet/legs will swell due to

> >> muscle contractions not able to push things where should be, so

> >> fluids accumulate.

> >>

> >> Often my feet will feel cold at least to my brain but they really

> >> aren't. Or they will be sweating but freezing to the touch. Or too

> >> they feel cold to the touch and brain yes yeppers their cold. My

> >> feet can be cold when I am hot, or hot when I am cold.

> >>

> >> So wondering if the swelling i tend to only get in the summer heat

> >> could be related to the HSP/FSP if indeed this is what I have? Or

> > am

> >> I barking up the wrong tree? Oh I have had circulation, heart

> >> disease etc... checked and I am a bill of health heart wise. Was

> >> told my leg cramps, were not due to circulation issues as that is

> >> fine.

> >>

> >> anyone have problems with feet/ankles, and feeling like legs are

> >> swollen but in the summer heat not when it is cold?

> >>

> >> Oh if the MRI's come back with no lesions and he says its not MS, I

> >> plan on talking more with him on the HSP or PLS issue. I am having

> >> or have had actually many episodes of neck stiffness, and spasms,

> > so

> >> not sure how that would fit in either. Also having episodes where

> >> feels like chest is being crushed (sorta like where the bra band

> >> would be). It goes away but can last for hours. Again I know my

> >> heart is ok from all the testing I had a few months back. So this

> >> feels more like some kind of spasms in the ribcage area not heart

> >> related.

> >>

> >> thanks in advance.

> >>

> >> marfla

> >> orlando fl

> >>

> >

> >

> >

> >

> >

> >

> >

> >

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Share on other sites
Guest guest

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Posted
Posted

thank danny.

i have thought about compression hose. however, i am allergic to panty hose,

and even if these are made out of different materials, i have such a problem

wearing anything tight. i wear clothes a size too big as i can't handle

anything tight anywhere. even anklet socks and shoes bother me.

another thing it seems to me at least in my illogical m ind if you wear knee

high compression hose then you would even up having a severe indentations

below the knee. like when i wear ankle socks they dib into my skin and even

leave small cuts in the summer at times. wouldn't compression knee highs do

the same?

the though of wearing knee highs esp compression hose makesmy body shutter

and cringe. but i guess i may have to one day for the swelling.

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

>

>

> > Marsha

> > According to Dr. Valenstein people with PLS have feet and ankle

> > swelling as the disease progresses...same deal as HSP in the the

> > muscles are so tight around the veins that they don't allow the veins

> > to send the fluid up and out. He said diuretis simply dehydrate the

> > rest of your body and you will still have swollen feet. That was

> > experience. His suggestion was to elevate your feet above your

> > heart. As I was saying that didn't work He was tapping his finger on

> > my knee saying I wasn't willing to give up the hours required to be

> > in that position so the swelling could go down. Ha he knows me

> > doesn't he?

> > I also got another swelling whammy. out-of-control adrenal

> > hyperplasia sends you into a critical adrenal insufficiency and

> > causes more swelling in the feet and ankles.

> > The therapist gave me a suggestion that works IF you have the right

> > devices. Lay on your back say on the couch and exercise your feet

> > above you...with a spring board or rubber bands. If you do this one

> > get ready to run to the pot as soon as you sit up. It comes off the

> > ankles and quickly hits the bladder.

> > Hope it helps/

> > Eva

> >

> >

> >>

> >> Hi all, Sorry I haven't been around posting much lately. Busy with

> >> work although that shouldn't be an excuse.

> >>

> >> I saw my neuro recently and he ordered another set of Brain and

> >> Cervical MRI's for possible MS. This possible MS has been the

> > issue

> >> for little over two years. Only this new neuro has taken time to

> > look

> >> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

> >> show if anything.

> >>

> >> I really want them to show something just so I can have answers.

> >> Whether that be MS, FSP, PLS or something else.

> >>

> >> Anyway, I have major problems in the heat and humidity, i.e.

> > symptoms

> >> increase, intensify etc... Another thing that happens in the

> >> heat/humidity is my ankles, feet swell really bad. My legs feel

> >> swollen although they won't look like they are. Elevating doesn't

> >> help. The cold temps my legs get stiff and feel difficult to move

> > or

> >> get going. Yet i don't swell in cooler or colder temps. Seems only

> > in

> >> the summer months/heat.

> >>

> >> No doc has ever been able to determine why i swell in the

> >> summer/heat. Last year i was given diuretics which maybe helped a

> >> little but not much.

> >>

> >> I was reading on the SP Foundation site about HSP effecting feet.

> >> Something about feet will feel cold, feet/legs will swell due to

> >> muscle contractions not able to push things where should be, so

> >> fluids accumulate.

> >>

> >> Often my feet will feel cold at least to my brain but they really

> >> aren't. Or they will be sweating but freezing to the touch. Or too

> >> they feel cold to the touch and brain yes yeppers their cold. My

> >> feet can be cold when I am hot, or hot when I am cold.

> >>

> >> So wondering if the swelling i tend to only get in the summer heat

> >> could be related to the HSP/FSP if indeed this is what I have? Or

> > am

> >> I barking up the wrong tree? Oh I have had circulation, heart

> >> disease etc... checked and I am a bill of health heart wise. Was

> >> told my leg cramps, were not due to circulation issues as that is

> >> fine.

> >>

> >> anyone have problems with feet/ankles, and feeling like legs are

> >> swollen but in the summer heat not when it is cold?

> >>

> >> Oh if the MRI's come back with no lesions and he says its not MS, I

> >> plan on talking more with him on the HSP or PLS issue. I am having

> >> or have had actually many episodes of neck stiffness, and spasms,

> > so

> >> not sure how that would fit in either. Also having episodes where

> >> feels like chest is being crushed (sorta like where the bra band

> >> would be). It goes away but can last for hours. Again I know my

> >> heart is ok from all the testing I had a few months back. So this

> >> feels more like some kind of spasms in the ribcage area not heart

> >> related.

> >>

> >> thanks in advance.

> >>

> >> marfla

> >> orlando fl

> >>

> >

> >

> >

> >

> >

> >

> >

> >

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Share on other sites
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Posted
Posted

Danny,

I like the idea of compression hose, but will that be effective given no

circulatory issues have been found? I am in Fl and that would be hot for me and

i sure would fight with those things to get them on---i fight with loose socks

and shoes at this point. seems like the colder i can keep my feet, the less

swollen they get. that is hard to make happen unless i am total a/c hermit in

the summer, but it does work for me more often than not. It is certainly worth

a chat with docs about the hose for those of us with the prob, so thanks.

tawny

Marfla marfla04@...> wrote:

thank danny.

i have thought about compression hose. however, i am allergic to panty hose,

and even if these are made out of different materials, i have such a problem

wearing anything tight. i wear clothes a size too big as i can't handle

anything tight anywhere. even anklet socks and shoes bother me.

another thing it seems to me at least in my illogical m ind if you wear knee

high compression hose then you would even up having a severe indentations

below the knee. like when i wear ankle socks they dib into my skin and even

leave small cuts in the summer at times. wouldn't compression knee highs do

the same?

the though of wearing knee highs esp compression hose makesmy body shutter

and cringe. but i guess i may have to one day for the swelling.

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

>

>

> > Marsha

> > According to Dr. Valenstein people with PLS have feet and ankle

> > swelling as the disease progresses...same deal as HSP in the the

> > muscles are so tight around the veins that they don't allow the veins

> > to send the fluid up and out. He said diuretis simply dehydrate the

> > rest of your body and you will still have swollen feet. That was

> > experience. His suggestion was to elevate your feet above your

> > heart. As I was saying that didn't work He was tapping his finger on

> > my knee saying I wasn't willing to give up the hours required to be

> > in that position so the swelling could go down. Ha he knows me

> > doesn't he?

> > I also got another swelling whammy. out-of-control adrenal

> > hyperplasia sends you into a critical adrenal insufficiency and

> > causes more swelling in the feet and ankles.

> > The therapist gave me a suggestion that works IF you have the right

> > devices. Lay on your back say on the couch and exercise your feet

> > above you...with a spring board or rubber bands. If you do this one

> > get ready to run to the pot as soon as you sit up. It comes off the

> > ankles and quickly hits the bladder.

> > Hope it helps/

> > Eva

> >

> >

> >>

> >> Hi all, Sorry I haven't been around posting much lately. Busy with

> >> work although that shouldn't be an excuse.

> >>

> >> I saw my neuro recently and he ordered another set of Brain and

> >> Cervical MRI's for possible MS. This possible MS has been the

> > issue

> >> for little over two years. Only this new neuro has taken time to

> > look

> >> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

> >> show if anything.

> >>

> >> I really want them to show something just so I can have answers.

> >> Whether that be MS, FSP, PLS or something else.

> >>

> >> Anyway, I have major problems in the heat and humidity, i.e.

> > symptoms

> >> increase, intensify etc... Another thing that happens in the

> >> heat/humidity is my ankles, feet swell really bad. My legs feel

> >> swollen although they won't look like they are. Elevating doesn't

> >> help. The cold temps my legs get stiff and feel difficult to move

> > or

> >> get going. Yet i don't swell in cooler or colder temps. Seems only

> > in

> >> the summer months/heat.

> >>

> >> No doc has ever been able to determine why i swell in the

> >> summer/heat. Last year i was given diuretics which maybe helped a

> >> little but not much.

> >>

> >> I was reading on the SP Foundation site about HSP effecting feet.

> >> Something about feet will feel cold, feet/legs will swell due to

> >> muscle contractions not able to push things where should be, so

> >> fluids accumulate.

> >>

> >> Often my feet will feel cold at least to my brain but they really

> >> aren't. Or they will be sweating but freezing to the touch. Or too

> >> they feel cold to the touch and brain yes yeppers their cold. My

> >> feet can be cold when I am hot, or hot when I am cold.

> >>

> >> So wondering if the swelling i tend to only get in the summer heat

> >> could be related to the HSP/FSP if indeed this is what I have? Or

> > am

> >> I barking up the wrong tree? Oh I have had circulation, heart

> >> disease etc... checked and I am a bill of health heart wise. Was

> >> told my leg cramps, were not due to circulation issues as that is

> >> fine.

> >>

> >> anyone have problems with feet/ankles, and feeling like legs are

> >> swollen but in the summer heat not when it is cold?

> >>

> >> Oh if the MRI's come back with no lesions and he says its not MS, I

> >> plan on talking more with him on the HSP or PLS issue. I am having

> >> or have had actually many episodes of neck stiffness, and spasms,

> > so

> >> not sure how that would fit in either. Also having episodes where

> >> feels like chest is being crushed (sorta like where the bra band

> >> would be). It goes away but can last for hours. Again I know my

> >> heart is ok from all the testing I had a few months back. So this

> >> feels more like some kind of spasms in the ribcage area not heart

> >> related.

> >>

> >> thanks in advance.

> >>

> >> marfla

> >> orlando fl

> >>

> >

> >

> >

> >

> >

> >

> >

> >

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Share on other sites
  • 2 weeks later...
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Guest guest

Posted
Posted

I've been wearing them for over a year without a problem. I live in Texas so I

can relate to the heat. I don't have any circulatory issues or fluid retention

problems. The problem is the disease. With the upper motor neuron involvement

causing stiffness/spasticity your calf muscles don't assist your veins with

blood return to the heart and you get edema. Danny

THSC dukerules413@...> wrote: Danny,

I like the idea of compression hose, but will that be effective given no

circulatory issues have been found? I am in Fl and that would be hot for me and

i sure would fight with those things to get them on---i fight with loose socks

and shoes at this point. seems like the colder i can keep my feet, the less

swollen they get. that is hard to make happen unless i am total a/c hermit in

the summer, but it does work for me more often than not. It is certainly worth

a chat with docs about the hose for those of us with the prob, so thanks.

tawny

Marfla marfla04@...> wrote:

thank danny.

i have thought about compression hose. however, i am allergic to panty hose,

and even if these are made out of different materials, i have such a problem

wearing anything tight. i wear clothes a size too big as i can't handle

anything tight anywhere. even anklet socks and shoes bother me.

another thing it seems to me at least in my illogical m ind if you wear knee

high compression hose then you would even up having a severe indentations

below the knee. like when i wear ankle socks they dib into my skin and even

leave small cuts in the summer at times. wouldn't compression knee highs do

the same?

the though of wearing knee highs esp compression hose makesmy body shutter

and cringe. but i guess i may have to one day for the swelling.

gentle hugs

marfla

Be Blessed

Re: Swelling ankles/legs/feet

>

>

> > Marsha

> > According to Dr. Valenstein people with PLS have feet and ankle

> > swelling as the disease progresses...same deal as HSP in the the

> > muscles are so tight around the veins that they don't allow the veins

> > to send the fluid up and out. He said diuretis simply dehydrate the

> > rest of your body and you will still have swollen feet. That was

> > experience. His suggestion was to elevate your feet above your

> > heart. As I was saying that didn't work He was tapping his finger on

> > my knee saying I wasn't willing to give up the hours required to be

> > in that position so the swelling could go down. Ha he knows me

> > doesn't he?

> > I also got another swelling whammy. out-of-control adrenal

> > hyperplasia sends you into a critical adrenal insufficiency and

> > causes more swelling in the feet and ankles.

> > The therapist gave me a suggestion that works IF you have the right

> > devices. Lay on your back say on the couch and exercise your feet

> > above you...with a spring board or rubber bands. If you do this one

> > get ready to run to the pot as soon as you sit up. It comes off the

> > ankles and quickly hits the bladder.

> > Hope it helps/

> > Eva

> >

> >

> >>

> >> Hi all, Sorry I haven't been around posting much lately. Busy with

> >> work although that shouldn't be an excuse.

> >>

> >> I saw my neuro recently and he ordered another set of Brain and

> >> Cervical MRI's for possible MS. This possible MS has been the

> > issue

> >> for little over two years. Only this new neuro has taken time to

> > look

> >> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

> >> show if anything.

> >>

> >> I really want them to show something just so I can have answers.

> >> Whether that be MS, FSP, PLS or something else.

> >>

> >> Anyway, I have major problems in the heat and humidity, i.e.

> > symptoms

> >> increase, intensify etc... Another thing that happens in the

> >> heat/humidity is my ankles, feet swell really bad. My legs feel

> >> swollen although they won't look like they are. Elevating doesn't

> >> help. The cold temps my legs get stiff and feel difficult to move

> > or

> >> get going. Yet i don't swell in cooler or colder temps. Seems only

> > in

> >> the summer months/heat.

> >>

> >> No doc has ever been able to determine why i swell in the

> >> summer/heat. Last year i was given diuretics which maybe helped a

> >> little but not much.

> >>

> >> I was reading on the SP Foundation site about HSP effecting feet.

> >> Something about feet will feel cold, feet/legs will swell due to

> >> muscle contractions not able to push things where should be, so

> >> fluids accumulate.

> >>

> >> Often my feet will feel cold at least to my brain but they really

> >> aren't. Or they will be sweating but freezing to the touch. Or too

> >> they feel cold to the touch and brain yes yeppers their cold. My

> >> feet can be cold when I am hot, or hot when I am cold.

> >>

> >> So wondering if the swelling i tend to only get in the summer heat

> >> could be related to the HSP/FSP if indeed this is what I have? Or

> > am

> >> I barking up the wrong tree? Oh I have had circulation, heart

> >> disease etc... checked and I am a bill of health heart wise. Was

> >> told my leg cramps, were not due to circulation issues as that is

> >> fine.

> >>

> >> anyone have problems with feet/ankles, and feeling like legs are

> >> swollen but in the summer heat not when it is cold?

> >>

> >> Oh if the MRI's come back with no lesions and he says its not MS, I

> >> plan on talking more with him on the HSP or PLS issue. I am having

> >> or have had actually many episodes of neck stiffness, and spasms,

> > so

> >> not sure how that would fit in either. Also having episodes where

> >> feels like chest is being crushed (sorta like where the bra band

> >> would be). It goes away but can last for hours. Again I know my

> >> heart is ok from all the testing I had a few months back. So this

> >> feels more like some kind of spasms in the ribcage area not heart

> >> related.

> >>

> >> thanks in advance.

> >>

> >> marfla

> >> orlando fl

> >>

> >

> >

> >

> >

> >

> >

> >

> >

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Posted
Posted

Danny but do you get this all year or just summer months? Or anyone do you

swell in ankles all year or just summer/hot/humid months?

I don't swell when in cool environment. Only if out in heat and humidity.

Guess I am curious if ppl experience the swelling all year or is it weather

related.

In the summer I can have severe swelling to point if wearing ankle socks my

socks will cut into the skin. Yesterday I was at Disney on my scooter,

wearing crocs, i was swollen in ankles/feet over twice normal size. Felt

like knees were swollen although they didn't look like they were.

I did get off scooter to walk briefly throughout the day. Butt no matter is

on a scooter, sitting, or walking in summer I am going to swell. BUt I will

also swell again only in summer months from sitting at desk at work in the

A/C. I am of course in and out of office, to car, brief times outside but

then back into AC office. boy do i swell up. as i repeat for who knows how

many times I don't swell in the cooler months

so others, do you swell no matter time of year? no matter the weather? no

matter your activity? etc...

thanks

marfla

Be Blessed

Re: Swelling ankles/legs/feet

>

>

> > Marsha

> > According to Dr. Valenstein people with PLS have feet and ankle

> > swelling as the disease progresses...same deal as HSP in the the

> > muscles are so tight around the veins that they don't allow the veins

> > to send the fluid up and out. He said diuretis simply dehydrate the

> > rest of your body and you will still have swollen feet. That was

> > experience. His suggestion was to elevate your feet above your

> > heart. As I was saying that didn't work He was tapping his finger on

> > my knee saying I wasn't willing to give up the hours required to be

> > in that position so the swelling could go down. Ha he knows me

> > doesn't he?

> > I also got another swelling whammy. out-of-control adrenal

> > hyperplasia sends you into a critical adrenal insufficiency and

> > causes more swelling in the feet and ankles.

> > The therapist gave me a suggestion that works IF you have the right

> > devices. Lay on your back say on the couch and exercise your feet

> > above you...with a spring board or rubber bands. If you do this one

> > get ready to run to the pot as soon as you sit up. It comes off the

> > ankles and quickly hits the bladder.

> > Hope it helps/

> > Eva

> >

> >

> >>

> >> Hi all, Sorry I haven't been around posting much lately. Busy with

> >> work although that shouldn't be an excuse.

> >>

> >> I saw my neuro recently and he ordered another set of Brain and

> >> Cervical MRI's for possible MS. This possible MS has been the

> > issue

> >> for little over two years. Only this new neuro has taken time to

> > look

> >> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

> >> show if anything.

> >>

> >> I really want them to show something just so I can have answers.

> >> Whether that be MS, FSP, PLS or something else.

> >>

> >> Anyway, I have major problems in the heat and humidity, i.e.

> > symptoms

> >> increase, intensify etc... Another thing that happens in the

> >> heat/humidity is my ankles, feet swell really bad. My legs feel

> >> swollen although they won't look like they are. Elevating doesn't

> >> help. The cold temps my legs get stiff and feel difficult to move

> > or

> >> get going. Yet i don't swell in cooler or colder temps. Seems only

> > in

> >> the summer months/heat.

> >>

> >> No doc has ever been able to determine why i swell in the

> >> summer/heat. Last year i was given diuretics which maybe helped a

> >> little but not much.

> >>

> >> I was reading on the SP Foundation site about HSP effecting feet.

> >> Something about feet will feel cold, feet/legs will swell due to

> >> muscle contractions not able to push things where should be, so

> >> fluids accumulate.

> >>

> >> Often my feet will feel cold at least to my brain but they really

> >> aren't. Or they will be sweating but freezing to the touch. Or too

> >> they feel cold to the touch and brain yes yeppers their cold. My

> >> feet can be cold when I am hot, or hot when I am cold.

> >>

> >> So wondering if the swelling i tend to only get in the summer heat

> >> could be related to the HSP/FSP if indeed this is what I have? Or

> > am

> >> I barking up the wrong tree? Oh I have had circulation, heart

> >> disease etc... checked and I am a bill of health heart wise. Was

> >> told my leg cramps, were not due to circulation issues as that is

> >> fine.

> >>

> >> anyone have problems with feet/ankles, and feeling like legs are

> >> swollen but in the summer heat not when it is cold?

> >>

> >> Oh if the MRI's come back with no lesions and he says its not MS, I

> >> plan on talking more with him on the HSP or PLS issue. I am having

> >> or have had actually many episodes of neck stiffness, and spasms,

> > so

> >> not sure how that would fit in either. Also having episodes where

> >> feels like chest is being crushed (sorta like where the bra band

> >> would be). It goes away but can last for hours. Again I know my

> >> heart is ok from all the testing I had a few months back. So this

> >> feels more like some kind of spasms in the ribcage area not heart

> >> related.

> >>

> >> thanks in advance.

> >>

> >> marfla

> >> orlando fl

> >>

> >

> >

> >

> >

> >

> >

> >

> >

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Posted
Posted

Danny but do you get this all year or just summer months? Or anyone do you

swell in ankles all year or just summer/hot/humid months?

I don't swell when in cool environment. Only if out in heat and humidity.

Guess I am curious if ppl experience the swelling all year or is it weather

related.

In the summer I can have severe swelling to point if wearing ankle socks my

socks will cut into the skin. Yesterday I was at Disney on my scooter,

wearing crocs, i was swollen in ankles/feet over twice normal size. Felt

like knees were swollen although they didn't look like they were.

I did get off scooter to walk briefly throughout the day. Butt no matter is

on a scooter, sitting, or walking in summer I am going to swell. BUt I will

also swell again only in summer months from sitting at desk at work in the

A/C. I am of course in and out of office, to car, brief times outside but

then back into AC office. boy do i swell up. as i repeat for who knows how

many times I don't swell in the cooler months

so others, do you swell no matter time of year? no matter the weather? no

matter your activity? etc...

thanks

marfla

Be Blessed

Re: Swelling ankles/legs/feet

>

>

> > Marsha

> > According to Dr. Valenstein people with PLS have feet and ankle

> > swelling as the disease progresses...same deal as HSP in the the

> > muscles are so tight around the veins that they don't allow the veins

> > to send the fluid up and out. He said diuretis simply dehydrate the

> > rest of your body and you will still have swollen feet. That was

> > experience. His suggestion was to elevate your feet above your

> > heart. As I was saying that didn't work He was tapping his finger on

> > my knee saying I wasn't willing to give up the hours required to be

> > in that position so the swelling could go down. Ha he knows me

> > doesn't he?

> > I also got another swelling whammy. out-of-control adrenal

> > hyperplasia sends you into a critical adrenal insufficiency and

> > causes more swelling in the feet and ankles.

> > The therapist gave me a suggestion that works IF you have the right

> > devices. Lay on your back say on the couch and exercise your feet

> > above you...with a spring board or rubber bands. If you do this one

> > get ready to run to the pot as soon as you sit up. It comes off the

> > ankles and quickly hits the bladder.

> > Hope it helps/

> > Eva

> >

> >

> >>

> >> Hi all, Sorry I haven't been around posting much lately. Busy with

> >> work although that shouldn't be an excuse.

> >>

> >> I saw my neuro recently and he ordered another set of Brain and

> >> Cervical MRI's for possible MS. This possible MS has been the

> > issue

> >> for little over two years. Only this new neuro has taken time to

> > look

> >> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

> >> show if anything.

> >>

> >> I really want them to show something just so I can have answers.

> >> Whether that be MS, FSP, PLS or something else.

> >>

> >> Anyway, I have major problems in the heat and humidity, i.e.

> > symptoms

> >> increase, intensify etc... Another thing that happens in the

> >> heat/humidity is my ankles, feet swell really bad. My legs feel

> >> swollen although they won't look like they are. Elevating doesn't

> >> help. The cold temps my legs get stiff and feel difficult to move

> > or

> >> get going. Yet i don't swell in cooler or colder temps. Seems only

> > in

> >> the summer months/heat.

> >>

> >> No doc has ever been able to determine why i swell in the

> >> summer/heat. Last year i was given diuretics which maybe helped a

> >> little but not much.

> >>

> >> I was reading on the SP Foundation site about HSP effecting feet.

> >> Something about feet will feel cold, feet/legs will swell due to

> >> muscle contractions not able to push things where should be, so

> >> fluids accumulate.

> >>

> >> Often my feet will feel cold at least to my brain but they really

> >> aren't. Or they will be sweating but freezing to the touch. Or too

> >> they feel cold to the touch and brain yes yeppers their cold. My

> >> feet can be cold when I am hot, or hot when I am cold.

> >>

> >> So wondering if the swelling i tend to only get in the summer heat

> >> could be related to the HSP/FSP if indeed this is what I have? Or

> > am

> >> I barking up the wrong tree? Oh I have had circulation, heart

> >> disease etc... checked and I am a bill of health heart wise. Was

> >> told my leg cramps, were not due to circulation issues as that is

> >> fine.

> >>

> >> anyone have problems with feet/ankles, and feeling like legs are

> >> swollen but in the summer heat not when it is cold?

> >>

> >> Oh if the MRI's come back with no lesions and he says its not MS, I

> >> plan on talking more with him on the HSP or PLS issue. I am having

> >> or have had actually many episodes of neck stiffness, and spasms,

> > so

> >> not sure how that would fit in either. Also having episodes where

> >> feels like chest is being crushed (sorta like where the bra band

> >> would be). It goes away but can last for hours. Again I know my

> >> heart is ok from all the testing I had a few months back. So this

> >> feels more like some kind of spasms in the ribcage area not heart

> >> related.

> >>

> >> thanks in advance.

> >>

> >> marfla

> >> orlando fl

> >>

> >

> >

> >

> >

> >

> >

> >

> >

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Posted
Posted

mine too is heat related. isn't that odd?

tawny

lyndalgbrown LyndalGBrown@...> wrote:

Marsha,

Speaking for myself, I only get feet and ankle swelling during the

hot summer weather. Since we've gotten an evaporative cooler for our

house two summers ago, I don't get nearly the swelling that I used to

get when the weather (and house) got very hot. I've been on a low

salt diet since my diagnoses to cut down on liquid retention for an

inner ear problem similar to Meniere's Disease which was caused when

I started taking baclofen. I haven't yet reached menopause, so I DO

retain some water for a few days each month which makes it worse in

the summer. However, I have never had ankle swelling during winter,

spring or fall.

I've been using a walker since a year after my diagnosis. The past

two years, though, I've been walking far less than I used to. Walking

now requires me to lean heavily on my walker for balance which puts

too much weight on my arms and causes other problems (another story

for another day).

Lyndal

Colorado, USA

PLS dx 1997

>

> Danny but do you get this all year or just summer months? Or

anyone do you

> swell in ankles all year or just summer/hot/humid months?

>

> I don't swell when in cool environment. Only if out in heat and

humidity.

>

> Guess I am curious if ppl experience the swelling all year or is it

weather

> related.

>

> In the summer I can have severe swelling to point if wearing ankle

socks my

> socks will cut into the skin. Yesterday I was at Disney on my

scooter,

> wearing crocs, i was swollen in ankles/feet over twice normal size.

Felt

> like knees were swollen although they didn't look like they were.

>

> I did get off scooter to walk briefly throughout the day. Butt no

matter is

> on a scooter, sitting, or walking in summer I am going to swell.

BUt I will

> also swell again only in summer months from sitting at desk at work

in the

> A/C. I am of course in and out of office, to car, brief times

outside but

> then back into AC office. boy do i swell up. as i repeat for who

knows how

> many times I don't swell in the cooler months

>

> so others, do you swell no matter time of year? no matter the

weather? no

> matter your activity? etc...

>

> thanks

> marfla

> Be Blessed

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Posted
Posted

mine too is heat related. isn't that odd?

tawny

lyndalgbrown LyndalGBrown@...> wrote:

Marsha,

Speaking for myself, I only get feet and ankle swelling during the

hot summer weather. Since we've gotten an evaporative cooler for our

house two summers ago, I don't get nearly the swelling that I used to

get when the weather (and house) got very hot. I've been on a low

salt diet since my diagnoses to cut down on liquid retention for an

inner ear problem similar to Meniere's Disease which was caused when

I started taking baclofen. I haven't yet reached menopause, so I DO

retain some water for a few days each month which makes it worse in

the summer. However, I have never had ankle swelling during winter,

spring or fall.

I've been using a walker since a year after my diagnosis. The past

two years, though, I've been walking far less than I used to. Walking

now requires me to lean heavily on my walker for balance which puts

too much weight on my arms and causes other problems (another story

for another day).

Lyndal

Colorado, USA

PLS dx 1997

>

> Danny but do you get this all year or just summer months? Or

anyone do you

> swell in ankles all year or just summer/hot/humid months?

>

> I don't swell when in cool environment. Only if out in heat and

humidity.

>

> Guess I am curious if ppl experience the swelling all year or is it

weather

> related.

>

> In the summer I can have severe swelling to point if wearing ankle

socks my

> socks will cut into the skin. Yesterday I was at Disney on my

scooter,

> wearing crocs, i was swollen in ankles/feet over twice normal size.

Felt

> like knees were swollen although they didn't look like they were.

>

> I did get off scooter to walk briefly throughout the day. Butt no

matter is

> on a scooter, sitting, or walking in summer I am going to swell.

BUt I will

> also swell again only in summer months from sitting at desk at work

in the

> A/C. I am of course in and out of office, to car, brief times

outside but

> then back into AC office. boy do i swell up. as i repeat for who

knows how

> many times I don't swell in the cooler months

>

> so others, do you swell no matter time of year? no matter the

weather? no

> matter your activity? etc...

>

> thanks

> marfla

> Be Blessed

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Posted
Posted

Yeah I think it's odd and must have something to do with the humidity though

here in Florida as well. I use to swell the same when living in GA but

there the heat/humidity was about the same here in FL. Cooler months though

no problem. So I trying to figure out if the swelling is just " normal " due

to heat and humidity or related to all this other stuff going on.

thanks

marfla

Be Blessed

Re: Re: Swelling ankles/legs/feet

> mine too is heat related. isn't that odd?

> tawny

>

> lyndalgbrown LyndalGBrown@...> wrote:

> Marsha,

>

> Speaking for myself, I only get feet and ankle swelling during the

> hot summer weather. Since we've gotten an evaporative cooler for our

> house two summers ago, I don't get nearly the swelling that I used to

> get when the weather (and house) got very hot. I've been on a low

> salt diet since my diagnoses to cut down on liquid retention for an

> inner ear problem similar to Meniere's Disease which was caused when

> I started taking baclofen. I haven't yet reached menopause, so I DO

> retain some water for a few days each month which makes it worse in

> the summer. However, I have never had ankle swelling during winter,

> spring or fall.

>

> I've been using a walker since a year after my diagnosis. The past

> two years, though, I've been walking far less than I used to. Walking

> now requires me to lean heavily on my walker for balance which puts

> too much weight on my arms and causes other problems (another story

> for another day).

>

> Lyndal

> Colorado, USA

> PLS dx 1997

>

>

>>

>> Danny but do you get this all year or just summer months? Or

> anyone do you

>> swell in ankles all year or just summer/hot/humid months?

>>

>> I don't swell when in cool environment. Only if out in heat and

> humidity.

>>

>> Guess I am curious if ppl experience the swelling all year or is it

> weather

>> related.

>>

>> In the summer I can have severe swelling to point if wearing ankle

> socks my

>> socks will cut into the skin. Yesterday I was at Disney on my

> scooter,

>> wearing crocs, i was swollen in ankles/feet over twice normal size.

> Felt

>> like knees were swollen although they didn't look like they were.

>>

>> I did get off scooter to walk briefly throughout the day. Butt no

> matter is

>> on a scooter, sitting, or walking in summer I am going to swell.

> BUt I will

>> also swell again only in summer months from sitting at desk at work

> in the

>> A/C. I am of course in and out of office, to car, brief times

> outside but

>> then back into AC office. boy do i swell up. as i repeat for who

> knows how

>> many times I don't swell in the cooler months

>>

>> so others, do you swell no matter time of year? no matter the

> weather? no

>> matter your activity? etc...

>>

>> thanks

>> marfla

>> Be Blessed

>

>

>

>

>

>

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Posted
Posted

Thanks for sharing. Cooler months I do fine. But I am beginning to think

it's the heat and humidity having the effect. Now to figure out if this is

just something 'normal " for me or related to all this other stuff going on.

marfla

Be Blessed

Re: Swelling ankles/legs/feet

> Marsha,

>

> Speaking for myself, I only get feet and ankle swelling during the

> hot summer weather. Since we've gotten an evaporative cooler for our

> house two summers ago, I don't get nearly the swelling that I used to

> get when the weather (and house) got very hot. I've been on a low

> salt diet since my diagnoses to cut down on liquid retention for an

> inner ear problem similar to Meniere's Disease which was caused when

> I started taking baclofen. I haven't yet reached menopause, so I DO

> retain some water for a few days each month which makes it worse in

> the summer. However, I have never had ankle swelling during winter,

> spring or fall.

>

> I've been using a walker since a year after my diagnosis. The past

> two years, though, I've been walking far less than I used to. Walking

> now requires me to lean heavily on my walker for balance which puts

> too much weight on my arms and causes other problems (another story

> for another day).

>

> Lyndal

> Colorado, USA

> PLS dx 1997

>

>

>>

>> Danny but do you get this all year or just summer months? Or

> anyone do you

>> swell in ankles all year or just summer/hot/humid months?

>>

>> I don't swell when in cool environment. Only if out in heat and

> humidity.

>>

>> Guess I am curious if ppl experience the swelling all year or is it

> weather

>> related.

>>

>> In the summer I can have severe swelling to point if wearing ankle

> socks my

>> socks will cut into the skin. Yesterday I was at Disney on my

> scooter,

>> wearing crocs, i was swollen in ankles/feet over twice normal size.

> Felt

>> like knees were swollen although they didn't look like they were.

>>

>> I did get off scooter to walk briefly throughout the day. Butt no

> matter is

>> on a scooter, sitting, or walking in summer I am going to swell.

> BUt I will

>> also swell again only in summer months from sitting at desk at work

> in the

>> A/C. I am of course in and out of office, to car, brief times

> outside but

>> then back into AC office. boy do i swell up. as i repeat for who

> knows how

>> many times I don't swell in the cooler months

>>

>> so others, do you swell no matter time of year? no matter the

> weather? no

>> matter your activity? etc...

>>

>> thanks

>> marfla

>> Be Blessed

>

>

>

>

>

>

>

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Posted
Posted

I never used to have any such problems but Oct 2000 I fell and broke my

right hip. Spent 8 weeks in hospital and rehab and it was 12 weeks till

I was allowed to put full weight on it. For years after that my left

ankle was continually swollen and occasionally painful (maybe I damaged

ligaments or something hopping on it using the standing frame before I

was allowed to put weight on it). I used to wear a compression stocking

on it most days to keep the swelling down but as of about 12 months ago

I no longer needed to. Not sure what happened but have since read that

LDN can act as a very mild diuretic, so maybe over the course of the

previous 12 months that cumulatively had the desired effect.

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Posted
Posted

I swell in the cool weather also. Haven't noticed any difference weather wise.

Danny

Marfla marfla04@...> wrote: Danny but do you get this all year or

just summer months? Or anyone do you

swell in ankles all year or just summer/hot/humid months?

I don't swell when in cool environment. Only if out in heat and humidity.

Guess I am curious if ppl experience the swelling all year or is it weather

related.

In the summer I can have severe swelling to point if wearing ankle socks my

socks will cut into the skin. Yesterday I was at Disney on my scooter,

wearing crocs, i was swollen in ankles/feet over twice normal size. Felt

like knees were swollen although they didn't look like they were.

I did get off scooter to walk briefly throughout the day. Butt no matter is

on a scooter, sitting, or walking in summer I am going to swell. BUt I will

also swell again only in summer months from sitting at desk at work in the

A/C. I am of course in and out of office, to car, brief times outside but

then back into AC office. boy do i swell up. as i repeat for who knows how

many times I don't swell in the cooler months

so others, do you swell no matter time of year? no matter the weather? no

matter your activity? etc...

thanks

marfla

Be Blessed

Re: Swelling ankles/legs/feet

>

>

> > Marsha

> > According to Dr. Valenstein people with PLS have feet and ankle

> > swelling as the disease progresses...same deal as HSP in the the

> > muscles are so tight around the veins that they don't allow the veins

> > to send the fluid up and out. He said diuretis simply dehydrate the

> > rest of your body and you will still have swollen feet. That was

> > experience. His suggestion was to elevate your feet above your

> > heart. As I was saying that didn't work He was tapping his finger on

> > my knee saying I wasn't willing to give up the hours required to be

> > in that position so the swelling could go down. Ha he knows me

> > doesn't he?

> > I also got another swelling whammy. out-of-control adrenal

> > hyperplasia sends you into a critical adrenal insufficiency and

> > causes more swelling in the feet and ankles.

> > The therapist gave me a suggestion that works IF you have the right

> > devices. Lay on your back say on the couch and exercise your feet

> > above you...with a spring board or rubber bands. If you do this one

> > get ready to run to the pot as soon as you sit up. It comes off the

> > ankles and quickly hits the bladder.

> > Hope it helps/

> > Eva

> >

> >

> >>

> >> Hi all, Sorry I haven't been around posting much lately. Busy with

> >> work although that shouldn't be an excuse.

> >>

> >> I saw my neuro recently and he ordered another set of Brain and

> >> Cervical MRI's for possible MS. This possible MS has been the

> > issue

> >> for little over two years. Only this new neuro has taken time to

> > look

> >> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

> >> show if anything.

> >>

> >> I really want them to show something just so I can have answers.

> >> Whether that be MS, FSP, PLS or something else.

> >>

> >> Anyway, I have major problems in the heat and humidity, i.e.

> > symptoms

> >> increase, intensify etc... Another thing that happens in the

> >> heat/humidity is my ankles, feet swell really bad. My legs feel

> >> swollen although they won't look like they are. Elevating doesn't

> >> help. The cold temps my legs get stiff and feel difficult to move

> > or

> >> get going. Yet i don't swell in cooler or colder temps. Seems only

> > in

> >> the summer months/heat.

> >>

> >> No doc has ever been able to determine why i swell in the

> >> summer/heat. Last year i was given diuretics which maybe helped a

> >> little but not much.

> >>

> >> I was reading on the SP Foundation site about HSP effecting feet.

> >> Something about feet will feel cold, feet/legs will swell due to

> >> muscle contractions not able to push things where should be, so

> >> fluids accumulate.

> >>

> >> Often my feet will feel cold at least to my brain but they really

> >> aren't. Or they will be sweating but freezing to the touch. Or too

> >> they feel cold to the touch and brain yes yeppers their cold. My

> >> feet can be cold when I am hot, or hot when I am cold.

> >>

> >> So wondering if the swelling i tend to only get in the summer heat

> >> could be related to the HSP/FSP if indeed this is what I have? Or

> > am

> >> I barking up the wrong tree? Oh I have had circulation, heart

> >> disease etc... checked and I am a bill of health heart wise. Was

> >> told my leg cramps, were not due to circulation issues as that is

> >> fine.

> >>

> >> anyone have problems with feet/ankles, and feeling like legs are

> >> swollen but in the summer heat not when it is cold?

> >>

> >> Oh if the MRI's come back with no lesions and he says its not MS, I

> >> plan on talking more with him on the HSP or PLS issue. I am having

> >> or have had actually many episodes of neck stiffness, and spasms,

> > so

> >> not sure how that would fit in either. Also having episodes where

> >> feels like chest is being crushed (sorta like where the bra band

> >> would be). It goes away but can last for hours. Again I know my

> >> heart is ok from all the testing I had a few months back. So this

> >> feels more like some kind of spasms in the ribcage area not heart

> >> related.

> >>

> >> thanks in advance.

> >>

> >> marfla

> >> orlando fl

> >>

> >

> >

> >

> >

> >

> >

> >

> >

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Posted
Posted

thanks danny for responding. swelling not matter when isn't fun.

marfla

Be Blessed

Re: Swelling ankles/legs/feet

>

>

> > Marsha

> > According to Dr. Valenstein people with PLS have feet and ankle

> > swelling as the disease progresses...same deal as HSP in the the

> > muscles are so tight around the veins that they don't allow the veins

> > to send the fluid up and out. He said diuretis simply dehydrate the

> > rest of your body and you will still have swollen feet. That was

> > experience. His suggestion was to elevate your feet above your

> > heart. As I was saying that didn't work He was tapping his finger on

> > my knee saying I wasn't willing to give up the hours required to be

> > in that position so the swelling could go down. Ha he knows me

> > doesn't he?

> > I also got another swelling whammy. out-of-control adrenal

> > hyperplasia sends you into a critical adrenal insufficiency and

> > causes more swelling in the feet and ankles.

> > The therapist gave me a suggestion that works IF you have the right

> > devices. Lay on your back say on the couch and exercise your feet

> > above you...with a spring board or rubber bands. If you do this one

> > get ready to run to the pot as soon as you sit up. It comes off the

> > ankles and quickly hits the bladder.

> > Hope it helps/

> > Eva

> >

> >

> >>

> >> Hi all, Sorry I haven't been around posting much lately. Busy with

> >> work although that shouldn't be an excuse.

> >>

> >> I saw my neuro recently and he ordered another set of Brain and

> >> Cervical MRI's for possible MS. This possible MS has been the

> > issue

> >> for little over two years. Only this new neuro has taken time to

> > look

> >> beyond MS, and mentioned HSP/FSP. So we will see what these MRI's

> >> show if anything.

> >>

> >> I really want them to show something just so I can have answers.

> >> Whether that be MS, FSP, PLS or something else.

> >>

> >> Anyway, I have major problems in the heat and humidity, i.e.

> > symptoms

> >> increase, intensify etc... Another thing that happens in the

> >> heat/humidity is my ankles, feet swell really bad. My legs feel

> >> swollen although they won't look like they are. Elevating doesn't

> >> help. The cold temps my legs get stiff and feel difficult to move

> > or

> >> get going. Yet i don't swell in cooler or colder temps. Seems only

> > in

> >> the summer months/heat.

> >>

> >> No doc has ever been able to determine why i swell in the

> >> summer/heat. Last year i was given diuretics which maybe helped a

> >> little but not much.

> >>

> >> I was reading on the SP Foundation site about HSP effecting feet.

> >> Something about feet will feel cold, feet/legs will swell due to

> >> muscle contractions not able to push things where should be, so

> >> fluids accumulate.

> >>

> >> Often my feet will feel cold at least to my brain but they really

> >> aren't. Or they will be sweating but freezing to the touch. Or too

> >> they feel cold to the touch and brain yes yeppers their cold. My

> >> feet can be cold when I am hot, or hot when I am cold.

> >>

> >> So wondering if the swelling i tend to only get in the summer heat

> >> could be related to the HSP/FSP if indeed this is what I have? Or

> > am

> >> I barking up the wrong tree? Oh I have had circulation, heart

> >> disease etc... checked and I am a bill of health heart wise. Was

> >> told my leg cramps, were not due to circulation issues as that is

> >> fine.

> >>

> >> anyone have problems with feet/ankles, and feeling like legs are

> >> swollen but in the summer heat not when it is cold?

> >>

> >> Oh if the MRI's come back with no lesions and he says its not MS, I

> >> plan on talking more with him on the HSP or PLS issue. I am having

> >> or have had actually many episodes of neck stiffness, and spasms,

> > so

> >> not sure how that would fit in either. Also having episodes where

> >> feels like chest is being crushed (sorta like where the bra band

> >> would be). It goes away but can last for hours. Again I know my

> >> heart is ok from all the testing I had a few months back. So this

> >> feels more like some kind of spasms in the ribcage area not heart

> >> related.

> >>

> >> thanks in advance.

> >>

> >> marfla

> >> orlando fl

> >>

> >

> >

> >

> >

> >

> >

> >

> >

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