Re: Re: Persistant problem

[Guest guest]

Hi Darryl,

My husband is with Kaiser in Northern CA near San Francisco. Where are you

located?

My husband's neurologist recognized that my husband had LBD in 2003. I had

never heard of it before.

My husband too had swollen feet, nausea, cold feet and hands, but his doctor

put him on half an Atenolol 12.5mg It is such a low dosage, that he has no side

effects from it and it keeps his BP steady now. No other BP medications worked

for him. He was too sensitive to all of them and his blood pressure would drop

like a lead balloon. Jan

Boyd wrote:

We have been to the Kaiser ER now two times. Once on Sunday night and

once on tues night.

Her legs are swollen especially at the ankles. She has a lot of pain

and has to keep moving her legs around to find a spot that is

comfortable. But it only last a few minutes. She doesn't seem to have

the " tingles " in the legs anymore.

Our problem is these doctors don't hardly knoe what LBD is. They

perscribed Vicodin for the pain, but it does nothing for her.

Our problem is, I'm not sure what this is. I've seen leg aches

connected with the LBD before, but they don't usually come with

swelling, nausea, and timgles, cold feet and hands. All these things

are possible side effect of The BP medicatio Atinelol. She stopped

using it on saturday and now they are saying it could take some time

to leave the body and gave her vicodin. But AI am not sure they know

what they are doing.

They even gave her a EKG.

She is not sleeping well now either. She is on Seroquel (very low

dosage and has been on that for over 6 months. She has been sleeping

well until all this. I think the pain is interupting her sleep.

I'l at a loss here and don't know where to turn! There seems to be

know one that really knows LBD at our Kaisers here.

Darryl Boyd

> My Mom was diagnosed with LBD back in May. She had some habitations

> that were controlled with Seroquel (smallest dosage). She was not

> getting any sleep for about 2 months we found out later. The Seroquel

> helped her get to sleep and stopped the hallucinations. She also got

> the " shuffling walk (Parkenism). At first I saw no dementia problems

> and don't see many if at all today.

>

> They were also trying to get her blood pressure under control before

> that and trying different BP medicines. Most of them made her sick or

> did not work. Around June they put her on Atenelol and that lowered it

> somewhat and did not make her sick at that time. They added another BP

> medication later and then the BP went too low. So they eliminated it.

>

> Through all of this she has had some nausea in the AM and her legs

> " seem heavy " and ach off and on.

>

> A few weeks ago these symptoms of the nausea and Legs have been

> getting worse until Sunday when she was in so much pain in the legs

> (ach and tingling feeling and could not get comfortable) and the

> nausea just would not stop. We went in to the emergency and they felt

> it might be the Atenolol as the side effects for that drug is the same

> as she was having including minor dizziness, cold feet and hands,

> nausea, aching legs, tiredness).

>

> So they stopped the Atenolol that night and she slept poorly, but on

> Monday she only had mild problems with the symptoms in the morning

> then they stopped. We went into her doctor that afternoon and she said

> she had never had any problems with Atenolol like that but to be

> cautious, she stopped it and had us use the other BP medication

> (Felodipine) instead.

>

> Now for the problem. This morning (Tuesday) she had all the Legg

> problems and the nausea in the am again and it is tapering off.

>

> I'm lost here. Could it be the new BP medicine or maybe the old has

> not left her body yet, or could it be the Seroquel? Some of the side

> effects of Seroquel are tiredness and nausea. I though (or hoped) some

> of you might know!

>

> Sorry for the long post!!! I don't know what to do for her!!!

>

> Darryl

>

>

>

> --

> I am daugher of Leonard, diagnosed May 2004, probably had lbd since

1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery

..After that he developed aspiration pneumonia 7/05 with pulmonary

embolyis, which he almost died from. He had a 2nd bout of aspiration

pneumonia and uti 8/05. He died when his blood pressure fluctuations

started dropping without coming back up on 9/25/05,

> may he rest in peace with his mom and dad,

> a smile a day keeps the meanies away

>

>

>

>

>

[Guest guest]

Boyd,

They gave my mother a water pill to help reduce the swelling in her ankles.

The heart doctor did the ekg and said that the fluid buildup was a symptom of

heart damage. Water- fluid build-up can also occur in the heart- lung areas,

and add to breathing problems. For my mom, the water pill resulted in the

shift to the adult diapers. No way that mom could get to the bathroom quick

enough when the pill kicked in.

Dann

Boyd wrote:

We have been to the Kaiser ER now two times. Once on Sunday night and

once on tues night.

Her legs are swollen especially at the ankles. She has a lot of pain

and has to keep moving her legs around to find a spot that is

comfortable. But it only last a few minutes. She doesn't seem to have

the " tingles " in the legs anymore.

Our problem is these doctors don't hardly knoe what LBD is. They

perscribed Vicodin for the pain, but it does nothing for her.

Our problem is, I'm not sure what this is. I've seen leg aches

connected with the LBD before, but they don't usually come with

swelling, nausea, and timgles, cold feet and hands. All these things

are possible side effect of The BP medicatio Atinelol. She stopped

using it on saturday and now they are saying it could take some time

to leave the body and gave her vicodin. But AI am not sure they know

what they are doing.

They even gave her a EKG.

She is not sleeping well now either. She is on Seroquel (very low

dosage and has been on that for over 6 months. She has been sleeping

well until all this. I think the pain is interupting her sleep.

I'l at a loss here and don't know where to turn! There seems to be

know one that really knows LBD at our Kaisers here.

Darryl Boyd

> My Mom was diagnosed with LBD back in May. She had some habitations

> that were controlled with Seroquel (smallest dosage). She was not

> getting any sleep for about 2 months we found out later. The Seroquel

> helped her get to sleep and stopped the hallucinations. She also got

> the " shuffling walk (Parkenism). At first I saw no dementia problems

> and don't see many if at all today.

>

> They were also trying to get her blood pressure under control before

> that and trying different BP medicines. Most of them made her sick or

> did not work. Around June they put her on Atenelol and that lowered it

> somewhat and did not make her sick at that time. They added another BP

> medication later and then the BP went too low. So they eliminated it.

>

> Through all of this she has had some nausea in the AM and her legs

> " seem heavy " and ach off and on.

>

> A few weeks ago these symptoms of the nausea and Legs have been

> getting worse until Sunday when she was in so much pain in the legs

> (ach and tingling feeling and could not get comfortable) and the

> nausea just would not stop. We went in to the emergency and they felt

> it might be the Atenolol as the side effects for that drug is the same

> as she was having including minor dizziness, cold feet and hands,

> nausea, aching legs, tiredness).

>

> So they stopped the Atenolol that night and she slept poorly, but on

> Monday she only had mild problems with the symptoms in the morning

> then they stopped. We went into her doctor that afternoon and she said

> she had never had any problems with Atenolol like that but to be

> cautious, she stopped it and had us use the other BP medication

> (Felodipine) instead.

>

> Now for the problem. This morning (Tuesday) she had all the Legg

> problems and the nausea in the am again and it is tapering off.

>

> I'm lost here. Could it be the new BP medicine or maybe the old has

> not left her body yet, or could it be the Seroquel? Some of the side

> effects of Seroquel are tiredness and nausea. I though (or hoped) some

> of you might know!

>

> Sorry for the long post!!! I don't know what to do for her!!!

>

> Darryl

>

>

>

> --

> I am daugher of Leonard, diagnosed May 2004, probably had lbd since

1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery

..After that he developed aspiration pneumonia 7/05 with pulmonary

embolyis, which he almost died from. He had a 2nd bout of aspiration

pneumonia and uti 8/05. He died when his blood pressure fluctuations

started dropping without coming back up on 9/25/05,

> may he rest in peace with his mom and dad,

> a smile a day keeps the meanies away

>

>

>

>

>

[Guest guest]

HI Darryl,

Usually swelling of the feet point to edema which is connected to the heart. If

they took her off the BP meds did they give your mom something else? She can't

just go off all BP meds if she is having a problem with her blood pressure. My

mom, end stages, also appears in pain all the time (facial grimacing as she

can't talk anymore) and she gets perocet - one in the afternoon and one at

night. Mom used to have bad swollen feet but we started to put her feet up one

a couple of pillows while in bed sleeping and it helped a lot - mind you, she

also takes BP meds and has for years before LBD. So, you might want to try to

keep her feet elevated every chance you get.

I'm sure you mom doesn't have a UTI but for some reason my gut keeps telling me

to ask.

Best to you and your mom

Courage

[Guest guest]

Darryl, that sounds like it could be good news if the MRI shows

the spinal problem and it can be effectively treated and No dementia.

Hope is turns out good for both you and mom.

Tee

-------------- Original message ----------------------

> Thank you all. I really appreciate the ideas a lot! It really helps!

>

> I don't know what MSA is. I'm not up on all the " buss words " and such yet.

>

> She had a slight shuffle walk at first. Dec to May. They though her

> back might be the problem at first. They did xrays and found her lower

> back had 3 or 4 very bad disks. They were severely deteriorated. But

> she had no back aches.

>

> In May she was not sleeping at all. We found out later it had been

> going on for over 2 ? months or so. She was sleeping about 1 or two

> hours each night. Then the hallucinations started. Seeing cats and her

> son who lives 6 hours away.

>

> They sent her to a psychologist at first and with the shuffle and the

> not sleeping and hallucinations he gave her Seroquel. The

> hallucinations stopped on the lowest dosage and she started sleeping

> and has been there since May.

>

> The Neurologist at Walnut Creek Kaiser came a week later and is the

> one who diagnosed her with LBD. I asked him how he knew and he said

> because of the hallucinations, the Parkinsons walk and the loss of

> memory. Now I agree with all of that except the loss of memory. I will

> say she has some loss of memory, but no more than any 80 year old. My

> mother in law has more memory loss than my Mom and she doesn't have

> any other problems. But??

>

> But here is an update.

> When I pushed her Dr. to do something other than just give her

> vicodin, she called the WC neurologist up and asked him if the swollen

> ankles, sever leg pain (feels like a ton of bricks " , nausea (which has

> gone away the last 4 days since dumping the Atenolol and going to

> Fedelopine and also the ankle swelling is gone way down also, and

> tiredness in the legs. He told her it didn't sound like the Parkenism

> or Lewy Body to him. But it did sound like a nerve problem. He asked

> her if she had a fall or had bad back problems. Of coarse she had the

> sever spinal problems (see above back problems). He told her it

> sounded like Spinal Stenosis. It is all the symptoms that have not

> gone away yet. She is currently on Vicodin for the pain and they are

> scheduling her ASAP for a MRI of her spine.

>

> I can see no dementia in my mom in the last 10 to 12 months. She is

> almost the same as she used to be. She does take Seroquel still to

> help her sleep. The neurologist wanted to give her Sinemet for her

> shuffling, but we were scared of bringing back hallucinations, so we

> did not use it. She gets around pretty good until a week ago when all

> her leg problems got worse.

>

> I'm wondering if the Spinal Stinosis has always been her shuffeling

> problem all along. Now the Dr's can't say one way or another until the

> MRI.

>

> If it is, and no real dementia I wonder where we really are here. It

> is frustrating to say the least.

>

> But your comments have helped me a lot! And I really appreciate you

> concern and help.

> Thank You!!!!!!!!!!!!!!

> Darryl

>

>

>

[Guest guest]

Darryl,

she may have a combination of several things, but hallucinating esp pleasant

hallucinatinos is a sign of lewy body, cats, dogs, people that dont make our

loved one feels threatened,

i used to work for a neurosurgeon and i was intrigued by a few thngs you said,

i am not a medical professional other than i was a medical secretary for 5 years

and i am a professional patient.

an mri is a test for the soft tissues and is infrequently used by neuro's. they

prefer CT's as they show the bones and the harder materials.

you said she has problems with the 4 lower disks in her back, has she had a

myelogram, that is test where they inject dye directly into the spine to see

how much damage is done to the spine and the disks. it is a painful tests, adn

requires the patient to lay for about 24 hours after the test. after that there

is a discogram, where theyinject dye directly into the damage disks to see the

extent of the damage. this to is a painful procedure and requires 24 -48 hours

rest post test.

if the sciatica nerve which is the nerve in the low back is affected, normally

the patient will have leg pains as well. it could be one or both legs, could be

straight pain, shooting pain, numbness or pins and needles. if there is what is

called leg drop, where the patient cannot lift their leg and they dont shuffle

but drag it, is a warning sign thatneeds to be evaluated, soon. as that is a

sign of a dangeroulsy pinched nerve.

ankle swelling is not a usual back symptom.

frequently a steriod dos pak is given as an antiinflammatory to make the

swelling around the nerve to go down. also musle relaxers to relax the

tightnessaround the nerve and help with the leg pain as well as a pain medicine

for pain. the doc i worked for alwasy started with Physical Therapy to see if

that helped usally three times a week for 3 weeks. then if that didnt help,

surgery may/may not have beenan option.

with spinal stenosis,, itwould depend on whether there were spurs on the disks

or spine and if so how many. some may be able to operated on, others may not.

a word of cuation tho, if she does have LBD shemay react adversely to some of

th meds to help her back, so proceed slowy and with caution.

agan, i am just an average person who is a professional patient, not a doctor

or nurse, but wanted to share the info i did know. hugs,sharon m

---- Boyd wrote:

Thank you all. I really appreciate the ideas a lot! It really helps!

I don't know what MSA is. I'm not up on all the " buss words " and such yet.

She had a slight shuffle walk at first. Dec to May. They though her

back might be the problem at first. They did xrays and found her lower

back had 3 or 4 very bad disks. They were severely deteriorated. But

she had no back aches.

In May she was not sleeping at all. We found out later it had been

going on for over 2 ½ months or so. She was sleeping about 1 or two

hours each night. Then the hallucinations started. Seeing cats and her

son who lives 6 hours away.

They sent her to a psychologist at first and with the shuffle and the

not sleeping and hallucinations he gave her Seroquel. The

hallucinations stopped on the lowest dosage and she started sleeping

and has been there since May.

The Neurologist at Walnut Creek Kaiser came a week later and is the

one who diagnosed her with LBD. I asked him how he knew and he said

because of the hallucinations, the Parkinsons walk and the loss of

memory. Now I agree with all of that except the loss of memory. I will

say she has some loss of memory, but no more than any 80 year old. My

mother in law has more memory loss than my Mom and she doesn't have

any other problems. ButÂ…Â…

But here is an update.

When I pushed her Dr. to do something other than just give her

vicodin, she called the WC neurologist up and asked him if the swollen

ankles, sever leg pain (feels like a ton of bricks " , nausea (which has

gone away the last 4 days since dumping the Atenolol and going to

Fedelopine and also the ankle swelling is gone way down also, and

tiredness in the legs. He told her it didn't sound like the Parkenism

or Lewy Body to him. But it did sound like a nerve problem. He asked

her if she had a fall or had bad back problems. Of coarse she had the

sever spinal problems (see above back problems). He told her it

sounded like Spinal Stenosis. It is all the symptoms that have not

gone away yet. She is currently on Vicodin for the pain and they are

scheduling her ASAP for a MRI of her spine.

I can see no dementia in my mom in the last 10 to 12 months. She is

almost the same as she used to be. She does take Seroquel still to

help her sleep. The neurologist wanted to give her Sinemet for her

shuffling, but we were scared of bringing back hallucinations, so we

did not use it. She gets around pretty good until a week ago when all

her leg problems got worse.

I'm wondering if the Spinal Stinosis has always been her shuffeling

problem all along. Now the Dr's can't say one way or another until the

MRI.

If it is, and no real dementia I wonder where we really are here. It

is frustrating to say the least.

But your comments have helped me a lot! And I really appreciate you

concern and help.

Thank You!!!!!!!!!!!!!!

Darryl

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

diane,

yes it can be wonderous to see the results that PT can give for sciatica and

back pain, my 44 yo husband who paints and moves heavy furniture was shown a

number of exercises to do and stretches to do to help ease his chronic low

backpain, i frequently see him get up with discomfort and having difficulty

standing up straight to walking fine after a few minutes of approrpiate

stretches and exercises. much better than having to go under the knife but any

good neurosurgeon will only use surgery as a last result. glad to hear PT

helped hugs, sharon m

---- Diane wrote:

Thank you for this information. We think Mom damaged her sciatica

nerve lifting Dad and she's gone to two doctors (both of whom did not

see the need for an xray or CT scan - which I find incredible) and a

chiropractor looking for help. Finally, Friday, she found a PT who

seemed to help her and gave her exercises. She may also go back to

the chiropractor. I am constantly amazed by the different treatment

methods of different doctors. You'd think the medical community would

have some cohesiveness, but they don't seem to.

Diane

if the sciatica nerve which is the nerve in the low back is affected,

normally the patient will have leg pains as well. it could be one or

both legs, could be straight pain, shooting pain, numbness or pins and

needles. if there is what is called leg drop, where the patient cannot

lift their leg and they dont shuffle but drag it, is a warning sign

thatneeds to be evaluated, soon. as that is a sign of a dangeroulsy

pinched nerve.

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away