My Strange symptoms/saga for Elaine/others (Long!)

[Guest guest]

Hi -- Since I am new to the group I realized that you all have so much

knowledge and that I only explained my symptoms out of context in various

postings. Elaine asked me some pertinent questions -- so if you want to bear

with me, here is my entire saga and I hope maybe it will ring some bells

regarding what may be going on with me --or maybe help others -- apparently

some of my symptoms are unlike others in the group. So here goes:

I am 46 years old and female. Healthy all my life. This all started in

Oct. 2000. For the month prior I had a minor stomach bug thing on and off and

stupidly took *one* antibiotic (called Cesvil). Emotionally at this time

there was nothing specific going on out of the ordinary. Happily married,

loving famiily. I do have a lot of stress from owning my own business and

the economy, but nothing so unusual at this time. The next day after taking

one antibiotic I had an inflammed vaginal area. I remembered that

antibiotics can set off vaginal yeast infections. Gyn told me to take the

usual anti-fungal creams and some steriod creams (Just used cream 2 days).

But in restropsect I should not have done this since there was never any

yeast cultured. Also, gyn did PAP test which came back with mild cervical

dysplasia. Had cervical biopsy. (All cells are back to " normal " now.) So

basically a lot of " action " in this area of my body for the month of Nov.

2000. I also should mention I had a minor cosmetic procedure in Feb. 2000

near my eyes. In a nutshell, " irritation " never went away. Went to vaginal

specialist, had numerous tests, cultures, no yeast, no bacteria, no lyme, no

herpes etc. Diagnosed with " vulvodynia " . In Jan. 2001, constant burning

sensation spread to rectal area. Worse with clothing and sitting. Went to

colon/rectal specialist, all OK. Pain doc. thought all this was part of

" fibro " spectrum/neuropathy. Tried antidepressant (nortriptylene) for

nerve-blocking prorperties and Neurontin. Physical therapist thought maybe I

had myofacsial pain syndrome. Did " dry needling to relax muscles. By now it

is the summer of 2001, and I started getting the constant burning sensations

*everywhere in my body* (I sure hope the physical therapy and drugs didn't

make me worse!) and when tissues were pressed with fingertips, hives would

come out in those areas within a few minutes.

I decided this was an immunology issue. Moved onto different Drs. Had

ANA tests, Thyroid T3 T4, digestive stool test for " leaky gut syndrome " ,

intestinal yeast cultures, Sed. rates, C reactive protein, hormones, 24 hour

urine test and 24 hr oxalate tests among many others. All normal. Only

abnormal test was one revealing " no friendly bacteria " in my gut so I am

currently taking supplements. Had IgE and IgG food allergy panel and skin

prick tests. I reacted on these tests to many foods and did the elimination

diet for 3 weeks including no yeast, with no improvment. Actually I

eliminated all milk products for a full 7 weeks based on IgG/IgE food panel

test with no change. For the heck of it, even though I did not react, I am

currently trying the " no gluten " diet just so I can have all food groups

covered. I am holding off on taking any antihistamines or eliminating the

histamine foods so my upcoming tests are not skewed.

Current situation/description of my symptoms: I am awaiting results

of a Parasitology stool test and intracellular magnesium. Going to

dermatologist in Jan. for skin biopsy and to check for histamine (you guys

told me to check histamine on the biopsy and also METHYL histamine so I will

ask for these) and complement and also get an immunoflourescent stain.

Thanks to Jackie for sending lots of med. reference material, I also will

request that I get tested for thyroid anti-bodies. Here's my exact symptoms:

I have a burning sensation everywhere in my body at all times. It is

especially worse in rectal/vaginal area with sitting and clothing. I do

*not* itch and I do *not* break out in hives unless some " stingy areas " are

pressed with my fingertips with moderate pressure. When the " stingy " areas

are pressed, it feels very intense, like a beesting or spider bite. Within a

few minutes, I get red hives/welts (sort of look like mosquitoe bites) in

that immediate area-- the skin reaction may last a few minutes or several

hours. It seems clearly like some sort of pressure urticaria in some ways,

but it does not exactly fit the description I read on the websites. Other

than this symptom, thankfully I feel OK. I do not feel sickly, no stomach

problems and my energy is good. Of course I am very stressed by the last

year without a clear diagnosis (and many of the wrong docs!) which may have

contributed to the spreading symptoms??? I am vegetarian and work out daily.

No alcohol. Eat lots of fresh organic foods.

Side note: My Mom had a hyper active thyroid and has a rare skin cancer

called Cutaneious T-cell lymphoma. It took her a long time to get diagnosed.

It was diagnosed in 1997 in the blood based on high " sezary count. " She

assures me my symptoms are not the same. She had a fiery rash, intense

itching and plaques and lesions. Fortunately this is kept in remission with

a treatment called " Photophyersis " . My current doctor is into " integrated "

med. so he even wondered if my mother's condition traumatized me and caused

my symptoms. Since she is doing well, I really was not fretting about this

these last years and do not think this was the cause. (I am well aware of

the " mind-body " connection and I am trying to be very honest within myself to

help look for answers.)

So that is my story and where I am at. By the way, I spent months and

months on the vulvodynia forum -- I should have been on this urticaria forum

because I believe this is forum is more related to my issues. But I have no

regrets because, just like on this forum the people on the vulvodynia forum

have been so warm, carring and supportive -- and very informative. It is the

same stories -- lots of emotional and physical pain, lots of frustration,

no clear answers, many docs and general public unaware of the condition, many

meds tried, many doctors tried --- and lots of hope and prayers for finding

effective treatments so life can move forward pain free. Thank you all so

much if you made it through this far of my long post! I promise I will

contribute whatever I can the more I learn -- now I am just filled with many

questions, so I am sorry I am not contributing much to the group at this

point. Hopefully I will get some answers soon! Sincerely, Molly

[Guest guest]

Molly,

I have no specific answers or help for you, but I feel for you and what you're going through. I've had 7 years of chronic idiopathic urticaria, not your symptoms, but I can relate to the not-knowing and not being able to get answers. I think this group is helping me, too, even if it's only to know that there are others out there who have this. If we keep pooling all our resources maybe we can find answers.

I wish you all the luck. Keep the faith.

Tami (NJ)

[Guest guest]

Molly,

I have no specific answers or help for you, but I feel for you and what you're going through. I've had 7 years of chronic idiopathic urticaria, not your symptoms, but I can relate to the not-knowing and not being able to get answers. I think this group is helping me, too, even if it's only to know that there are others out there who have this. If we keep pooling all our resources maybe we can find answers.

I wish you all the luck. Keep the faith.

Tami (NJ)

[Guest guest]

Hi Molly, Bless your heart, I hate to hear you are suffering. You should

pick up the book Fixing Frannie, I think you would REALLY benefit from

reading her story. You can get it on Amazon or maybe Jackie or someone

could share it with you. You need to be tested for Masto!! I could also

get you in contact with Frannie (the author and masto sufferer) she is a

very very loving sweet woman who really sounds a lot like you. Love,

~Alena's Mom

My Strange symptoms/saga for Elaine/others (Long!)

> Hi -- Since I am new to the group I realized that you all have so much

> knowledge and that I only explained my symptoms out of context in various

> postings. Elaine asked me some pertinent questions -- so if you want to

bear

> with me, here is my entire saga and I hope maybe it will ring some bells

> regarding what may be going on with me --or maybe help others --

apparently

> some of my symptoms are unlike others in the group. So here goes:

> I am 46 years old and female. Healthy all my life. This all started

in

> Oct. 2000. For the month prior I had a minor stomach bug thing on and off

and

> stupidly took *one* antibiotic (called Cesvil). Emotionally at this time

> there was nothing specific going on out of the ordinary. Happily married,

> loving famiily. I do have a lot of stress from owning my own business and

> the economy, but nothing so unusual at this time. The next day after

taking

> one antibiotic I had an inflammed vaginal area. I remembered that

> antibiotics can set off vaginal yeast infections. Gyn told me to take the

> usual anti-fungal creams and some steriod creams (Just used cream 2 days).

> But in restropsect I should not have done this since there was never any

> yeast cultured. Also, gyn did PAP test which came back with mild

cervical

> dysplasia. Had cervical biopsy. (All cells are back to " normal " now.)

So

> basically a lot of " action " in this area of my body for the month of Nov.

> 2000. I also should mention I had a minor cosmetic procedure in Feb.

2000

> near my eyes. In a nutshell, " irritation " never went away. Went to

vaginal

> specialist, had numerous tests, cultures, no yeast, no bacteria, no lyme,

no

> herpes etc. Diagnosed with " vulvodynia " . In Jan. 2001, constant burning

> sensation spread to rectal area. Worse with clothing and sitting. Went to

> colon/rectal specialist, all OK. Pain doc. thought all this was part of

> " fibro " spectrum/neuropathy. Tried antidepressant (nortriptylene) for

> nerve-blocking prorperties and Neurontin. Physical therapist thought

maybe I

> had myofacsial pain syndrome. Did " dry needling to relax muscles. By now

it

> is the summer of 2001, and I started getting the constant burning

sensations

> *everywhere in my body* (I sure hope the physical therapy and drugs didn't

> make me worse!) and when tissues were pressed with fingertips, hives

would

> come out in those areas within a few minutes.

> I decided this was an immunology issue. Moved onto different Drs.

Had

> ANA tests, Thyroid T3 T4, digestive stool test for " leaky gut syndrome " ,

> intestinal yeast cultures, Sed. rates, C reactive protein, hormones, 24

hour

> urine test and 24 hr oxalate tests among many others. All normal. Only

> abnormal test was one revealing " no friendly bacteria " in my gut so I am

> currently taking supplements. Had IgE and IgG food allergy panel and skin

> prick tests. I reacted on these tests to many foods and did the

elimination

> diet for 3 weeks including no yeast, with no improvment. Actually I

> eliminated all milk products for a full 7 weeks based on IgG/IgE food

panel

> test with no change. For the heck of it, even though I did not react, I

am

> currently trying the " no gluten " diet just so I can have all food groups

> covered. I am holding off on taking any antihistamines or eliminating the

> histamine foods so my upcoming tests are not skewed.

> Current situation/description of my symptoms: I am awaiting

results

> of a Parasitology stool test and intracellular magnesium. Going to

> dermatologist in Jan. for skin biopsy and to check for histamine (you

guys

> told me to check histamine on the biopsy and also METHYL histamine so I

will

> ask for these) and complement and also get an immunoflourescent stain.

> Thanks to Jackie for sending lots of med. reference material, I also will

> request that I get tested for thyroid anti-bodies. Here's my exact

symptoms:

> I have a burning sensation everywhere in my body at all times. It

is

> especially worse in rectal/vaginal area with sitting and clothing. I do

> *not* itch and I do *not* break out in hives unless some " stingy areas "

are

> pressed with my fingertips with moderate pressure. When the " stingy "

areas

> are pressed, it feels very intense, like a beesting or spider bite.

Within a

> few minutes, I get red hives/welts (sort of look like mosquitoe bites) in

> that immediate area-- the skin reaction may last a few minutes or several

> hours. It seems clearly like some sort of pressure urticaria in some

ways,

> but it does not exactly fit the description I read on the websites. Other

> than this symptom, thankfully I feel OK. I do not feel sickly, no stomach

> problems and my energy is good. Of course I am very stressed by the last

> year without a clear diagnosis (and many of the wrong docs!) which may

have

> contributed to the spreading symptoms??? I am vegetarian and work out

daily.

> No alcohol. Eat lots of fresh organic foods.

> Side note: My Mom had a hyper active thyroid and has a rare skin

cancer

> called Cutaneious T-cell lymphoma. It took her a long time to get

diagnosed.

> It was diagnosed in 1997 in the blood based on high " sezary count. " She

> assures me my symptoms are not the same. She had a fiery rash, intense

> itching and plaques and lesions. Fortunately this is kept in remission

with

> a treatment called " Photophyersis " . My current doctor is into

" integrated "

> med. so he even wondered if my mother's condition traumatized me and

caused

> my symptoms. Since she is doing well, I really was not fretting about

this

> these last years and do not think this was the cause. (I am well aware

of

> the " mind-body " connection and I am trying to be very honest within myself

to

> help look for answers.)

> So that is my story and where I am at. By the way, I spent months

and

> months on the vulvodynia forum -- I should have been on this urticaria

forum

> because I believe this is forum is more related to my issues. But I have

no

> regrets because, just like on this forum the people on the vulvodynia

forum

> have been so warm, carring and supportive -- and very informative. It is

the

> same stories -- lots of emotional and physical pain, lots of

frustration,

> no clear answers, many docs and general public unaware of the condition,

many

> meds tried, many doctors tried --- and lots of hope and prayers for

finding

> effective treatments so life can move forward pain free. Thank you all so

> much if you made it through this far of my long post! I promise I will

> contribute whatever I can the more I learn -- now I am just filled with

many

> questions, so I am sorry I am not contributing much to the group at this

> point. Hopefully I will get some answers soon! Sincerely, Molly

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribe

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

Hi Molly, Bless your heart, I hate to hear you are suffering. You should

pick up the book Fixing Frannie, I think you would REALLY benefit from

reading her story. You can get it on Amazon or maybe Jackie or someone

could share it with you. You need to be tested for Masto!! I could also

get you in contact with Frannie (the author and masto sufferer) she is a

very very loving sweet woman who really sounds a lot like you. Love,

~Alena's Mom

My Strange symptoms/saga for Elaine/others (Long!)

> Hi -- Since I am new to the group I realized that you all have so much

> knowledge and that I only explained my symptoms out of context in various

> postings. Elaine asked me some pertinent questions -- so if you want to

bear

> with me, here is my entire saga and I hope maybe it will ring some bells

> regarding what may be going on with me --or maybe help others --

apparently

> some of my symptoms are unlike others in the group. So here goes:

> I am 46 years old and female. Healthy all my life. This all started

in

> Oct. 2000. For the month prior I had a minor stomach bug thing on and off

and

> stupidly took *one* antibiotic (called Cesvil). Emotionally at this time

> there was nothing specific going on out of the ordinary. Happily married,

> loving famiily. I do have a lot of stress from owning my own business and

> the economy, but nothing so unusual at this time. The next day after

taking

> one antibiotic I had an inflammed vaginal area. I remembered that

> antibiotics can set off vaginal yeast infections. Gyn told me to take the

> usual anti-fungal creams and some steriod creams (Just used cream 2 days).

> But in restropsect I should not have done this since there was never any

> yeast cultured. Also, gyn did PAP test which came back with mild

cervical

> dysplasia. Had cervical biopsy. (All cells are back to " normal " now.)

So

> basically a lot of " action " in this area of my body for the month of Nov.

> 2000. I also should mention I had a minor cosmetic procedure in Feb.

2000

> near my eyes. In a nutshell, " irritation " never went away. Went to

vaginal

> specialist, had numerous tests, cultures, no yeast, no bacteria, no lyme,

no

> herpes etc. Diagnosed with " vulvodynia " . In Jan. 2001, constant burning

> sensation spread to rectal area. Worse with clothing and sitting. Went to

> colon/rectal specialist, all OK. Pain doc. thought all this was part of

> " fibro " spectrum/neuropathy. Tried antidepressant (nortriptylene) for

> nerve-blocking prorperties and Neurontin. Physical therapist thought

maybe I

> had myofacsial pain syndrome. Did " dry needling to relax muscles. By now

it

> is the summer of 2001, and I started getting the constant burning

sensations

> *everywhere in my body* (I sure hope the physical therapy and drugs didn't

> make me worse!) and when tissues were pressed with fingertips, hives

would

> come out in those areas within a few minutes.

> I decided this was an immunology issue. Moved onto different Drs.

Had

> ANA tests, Thyroid T3 T4, digestive stool test for " leaky gut syndrome " ,

> intestinal yeast cultures, Sed. rates, C reactive protein, hormones, 24

hour

> urine test and 24 hr oxalate tests among many others. All normal. Only

> abnormal test was one revealing " no friendly bacteria " in my gut so I am

> currently taking supplements. Had IgE and IgG food allergy panel and skin

> prick tests. I reacted on these tests to many foods and did the

elimination

> diet for 3 weeks including no yeast, with no improvment. Actually I

> eliminated all milk products for a full 7 weeks based on IgG/IgE food

panel

> test with no change. For the heck of it, even though I did not react, I

am

> currently trying the " no gluten " diet just so I can have all food groups

> covered. I am holding off on taking any antihistamines or eliminating the

> histamine foods so my upcoming tests are not skewed.

> Current situation/description of my symptoms: I am awaiting

results

> of a Parasitology stool test and intracellular magnesium. Going to

> dermatologist in Jan. for skin biopsy and to check for histamine (you

guys

> told me to check histamine on the biopsy and also METHYL histamine so I

will

> ask for these) and complement and also get an immunoflourescent stain.

> Thanks to Jackie for sending lots of med. reference material, I also will

> request that I get tested for thyroid anti-bodies. Here's my exact

symptoms:

> I have a burning sensation everywhere in my body at all times. It

is

> especially worse in rectal/vaginal area with sitting and clothing. I do

> *not* itch and I do *not* break out in hives unless some " stingy areas "

are

> pressed with my fingertips with moderate pressure. When the " stingy "

areas

> are pressed, it feels very intense, like a beesting or spider bite.

Within a

> few minutes, I get red hives/welts (sort of look like mosquitoe bites) in

> that immediate area-- the skin reaction may last a few minutes or several

> hours. It seems clearly like some sort of pressure urticaria in some

ways,

> but it does not exactly fit the description I read on the websites. Other

> than this symptom, thankfully I feel OK. I do not feel sickly, no stomach

> problems and my energy is good. Of course I am very stressed by the last

> year without a clear diagnosis (and many of the wrong docs!) which may

have

> contributed to the spreading symptoms??? I am vegetarian and work out

daily.

> No alcohol. Eat lots of fresh organic foods.

> Side note: My Mom had a hyper active thyroid and has a rare skin

cancer

> called Cutaneious T-cell lymphoma. It took her a long time to get

diagnosed.

> It was diagnosed in 1997 in the blood based on high " sezary count. " She

> assures me my symptoms are not the same. She had a fiery rash, intense

> itching and plaques and lesions. Fortunately this is kept in remission

with

> a treatment called " Photophyersis " . My current doctor is into

" integrated "

> med. so he even wondered if my mother's condition traumatized me and

caused

> my symptoms. Since she is doing well, I really was not fretting about

this

> these last years and do not think this was the cause. (I am well aware

of

> the " mind-body " connection and I am trying to be very honest within myself

to

> help look for answers.)

> So that is my story and where I am at. By the way, I spent months

and

> months on the vulvodynia forum -- I should have been on this urticaria

forum

> because I believe this is forum is more related to my issues. But I have

no

> regrets because, just like on this forum the people on the vulvodynia

forum

> have been so warm, carring and supportive -- and very informative. It is

the

> same stories -- lots of emotional and physical pain, lots of

frustration,

> no clear answers, many docs and general public unaware of the condition,

many

> meds tried, many doctors tried --- and lots of hope and prayers for

finding

> effective treatments so life can move forward pain free. Thank you all so

> much if you made it through this far of my long post! I promise I will

> contribute whatever I can the more I learn -- now I am just filled with

many

> questions, so I am sorry I am not contributing much to the group at this

> point. Hopefully I will get some answers soon! Sincerely, Molly

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribe

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

Hi Molly, Bless your heart, I hate to hear you are suffering. You should

pick up the book Fixing Frannie, I think you would REALLY benefit from

reading her story. You can get it on Amazon or maybe Jackie or someone

could share it with you. You need to be tested for Masto!! I could also

get you in contact with Frannie (the author and masto sufferer) she is a

very very loving sweet woman who really sounds a lot like you. Love,

~Alena's Mom

My Strange symptoms/saga for Elaine/others (Long!)

> Hi -- Since I am new to the group I realized that you all have so much

> knowledge and that I only explained my symptoms out of context in various

> postings. Elaine asked me some pertinent questions -- so if you want to

bear

> with me, here is my entire saga and I hope maybe it will ring some bells

> regarding what may be going on with me --or maybe help others --

apparently

> some of my symptoms are unlike others in the group. So here goes:

> I am 46 years old and female. Healthy all my life. This all started

in

> Oct. 2000. For the month prior I had a minor stomach bug thing on and off

and

> stupidly took *one* antibiotic (called Cesvil). Emotionally at this time

> there was nothing specific going on out of the ordinary. Happily married,

> loving famiily. I do have a lot of stress from owning my own business and

> the economy, but nothing so unusual at this time. The next day after

taking

> one antibiotic I had an inflammed vaginal area. I remembered that

> antibiotics can set off vaginal yeast infections. Gyn told me to take the

> usual anti-fungal creams and some steriod creams (Just used cream 2 days).

> But in restropsect I should not have done this since there was never any

> yeast cultured. Also, gyn did PAP test which came back with mild

cervical

> dysplasia. Had cervical biopsy. (All cells are back to " normal " now.)

So

> basically a lot of " action " in this area of my body for the month of Nov.

> 2000. I also should mention I had a minor cosmetic procedure in Feb.

2000

> near my eyes. In a nutshell, " irritation " never went away. Went to

vaginal

> specialist, had numerous tests, cultures, no yeast, no bacteria, no lyme,

no

> herpes etc. Diagnosed with " vulvodynia " . In Jan. 2001, constant burning

> sensation spread to rectal area. Worse with clothing and sitting. Went to

> colon/rectal specialist, all OK. Pain doc. thought all this was part of

> " fibro " spectrum/neuropathy. Tried antidepressant (nortriptylene) for

> nerve-blocking prorperties and Neurontin. Physical therapist thought

maybe I

> had myofacsial pain syndrome. Did " dry needling to relax muscles. By now

it

> is the summer of 2001, and I started getting the constant burning

sensations

> *everywhere in my body* (I sure hope the physical therapy and drugs didn't

> make me worse!) and when tissues were pressed with fingertips, hives

would

> come out in those areas within a few minutes.

> I decided this was an immunology issue. Moved onto different Drs.

Had

> ANA tests, Thyroid T3 T4, digestive stool test for " leaky gut syndrome " ,

> intestinal yeast cultures, Sed. rates, C reactive protein, hormones, 24

hour

> urine test and 24 hr oxalate tests among many others. All normal. Only

> abnormal test was one revealing " no friendly bacteria " in my gut so I am

> currently taking supplements. Had IgE and IgG food allergy panel and skin

> prick tests. I reacted on these tests to many foods and did the

elimination

> diet for 3 weeks including no yeast, with no improvment. Actually I

> eliminated all milk products for a full 7 weeks based on IgG/IgE food

panel

> test with no change. For the heck of it, even though I did not react, I

am

> currently trying the " no gluten " diet just so I can have all food groups

> covered. I am holding off on taking any antihistamines or eliminating the

> histamine foods so my upcoming tests are not skewed.

> Current situation/description of my symptoms: I am awaiting

results

> of a Parasitology stool test and intracellular magnesium. Going to

> dermatologist in Jan. for skin biopsy and to check for histamine (you

guys

> told me to check histamine on the biopsy and also METHYL histamine so I

will

> ask for these) and complement and also get an immunoflourescent stain.

> Thanks to Jackie for sending lots of med. reference material, I also will

> request that I get tested for thyroid anti-bodies. Here's my exact

symptoms:

> I have a burning sensation everywhere in my body at all times. It

is

> especially worse in rectal/vaginal area with sitting and clothing. I do

> *not* itch and I do *not* break out in hives unless some " stingy areas "

are

> pressed with my fingertips with moderate pressure. When the " stingy "

areas

> are pressed, it feels very intense, like a beesting or spider bite.

Within a

> few minutes, I get red hives/welts (sort of look like mosquitoe bites) in

> that immediate area-- the skin reaction may last a few minutes or several

> hours. It seems clearly like some sort of pressure urticaria in some

ways,

> but it does not exactly fit the description I read on the websites. Other

> than this symptom, thankfully I feel OK. I do not feel sickly, no stomach

> problems and my energy is good. Of course I am very stressed by the last

> year without a clear diagnosis (and many of the wrong docs!) which may

have

> contributed to the spreading symptoms??? I am vegetarian and work out

daily.

> No alcohol. Eat lots of fresh organic foods.

> Side note: My Mom had a hyper active thyroid and has a rare skin

cancer

> called Cutaneious T-cell lymphoma. It took her a long time to get

diagnosed.

> It was diagnosed in 1997 in the blood based on high " sezary count. " She

> assures me my symptoms are not the same. She had a fiery rash, intense

> itching and plaques and lesions. Fortunately this is kept in remission

with

> a treatment called " Photophyersis " . My current doctor is into

" integrated "

> med. so he even wondered if my mother's condition traumatized me and

caused

> my symptoms. Since she is doing well, I really was not fretting about

this

> these last years and do not think this was the cause. (I am well aware

of

> the " mind-body " connection and I am trying to be very honest within myself

to

> help look for answers.)

> So that is my story and where I am at. By the way, I spent months

and

> months on the vulvodynia forum -- I should have been on this urticaria

forum

> because I believe this is forum is more related to my issues. But I have

no

> regrets because, just like on this forum the people on the vulvodynia

forum

> have been so warm, carring and supportive -- and very informative. It is

the

> same stories -- lots of emotional and physical pain, lots of

frustration,

> no clear answers, many docs and general public unaware of the condition,

many

> meds tried, many doctors tried --- and lots of hope and prayers for

finding

> effective treatments so life can move forward pain free. Thank you all so

> much if you made it through this far of my long post! I promise I will

> contribute whatever I can the more I learn -- now I am just filled with

many

> questions, so I am sorry I am not contributing much to the group at this

> point. Hopefully I will get some answers soon! Sincerely, Molly

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribe

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

[Guest guest]

Hi Molly. I second what says. I am reading 'Fixing Frannie' right

now, and I keep thinking about how much you sound like her. Her masto

symptoms started with all kinds of weird gynecological pain. She went

through several 'false' diagnoses over the years (boy, that sounds

familiar), which is quite common for masto. I've already promised this copy

to someone else, but maybe they will pass it on to you when they are

finished with it.

Air hugs,

Jackie

Life is tough, but I'm tougher.

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi Molly. I second what says. I am reading 'Fixing Frannie' right

now, and I keep thinking about how much you sound like her. Her masto

symptoms started with all kinds of weird gynecological pain. She went

through several 'false' diagnoses over the years (boy, that sounds

familiar), which is quite common for masto. I've already promised this copy

to someone else, but maybe they will pass it on to you when they are

finished with it.

Air hugs,

Jackie

Life is tough, but I'm tougher.

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi Molly. I second what says. I am reading 'Fixing Frannie' right

now, and I keep thinking about how much you sound like her. Her masto

symptoms started with all kinds of weird gynecological pain. She went

through several 'false' diagnoses over the years (boy, that sounds

familiar), which is quite common for masto. I've already promised this copy

to someone else, but maybe they will pass it on to you when they are

finished with it.

Air hugs,

Jackie

Life is tough, but I'm tougher.

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi Molly, I think that in Frannie's case it was bizarre pain that no one

could totally explain and she just didn't fit perfectly with any one single

disease so to speak. If I remember correctly in the book she talks about

deep tissue pain or she and I discussed it through email. I would strongly

recommend that you order the book through Amazon " Fixing Frannie " by Frannie

Rose and if you want I could get you in contact with her by email as well.

She is a very very sweet woman who has been through a lot. She is very

knowledgeable and I think you could really identify with her. Let me know

ok? Love, ~Alena's Mom

Re: My Strange symptoms/saga for Elaine/others (Long!)

> Hi Molly. I second what says. I am reading 'Fixing Frannie' right

> now, and I keep thinking about how much you sound like her. Her masto

> symptoms started with all kinds of weird gynecological pain. She went

> through several 'false' diagnoses over the years (boy, that sounds

> familiar), which is quite common for masto. I've already promised this

copy

> to someone else, but maybe they will pass it on to you when they are

> finished with it.

>

> Air hugs,

> Jackie

>

>

> Life is tough, but I'm tougher.

>

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribe

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>