autoimmune diseases

[Guest guest]

I am very interested in using these supplements to reduce muscle pain

that is possibly associated with a form of arthritis and to relieve

vulvar and bladder pain. I am starting to think doctors have no idea

what they are treating. Actually, I've had many doctors admit to this.

Does anyone ever have a problem with busting out crying when they go to

a doctor's appointment. Whenever I go to a new doctor, I go with the

hope in my heart that they will know what is wrong and will be able to

cure me even though my head knows that they will not be able to help

me. It frustrated me so to have to show the doctors exactly where it

hurts and then not being able to accurately pointto the area. It seems

like the whole area bothers me and I can't, on command, pick the area

that is hurting me the most. I get so nervous that I get flustered

easily and I bet many doctors have thought I am either stupid or psycho.

Anyway, I went to a new urologist yesterday because I believe that one

of my problems may be interstitial cystitis. She did an exam (yuk!) and

agreed to do a cystoscopy under anesthesia, which is something that I've

wanted a doctor to agree to for some time and had a hard time pushing

the idea. She seems very nice and wants to help in any way she can. I

am just furious that even she, a top doctor at one of the most notable

medical schools and hospitals, doesn't know what the problem is. From

this list it seems like this conditition is not so rare after all and

it's hard for me to beleve that I am the first woman in California to

have this problem. Maybe I am though... I did mention to her that I

had HPV in the past and think that the virus may have something to do

with the raw, irritated skin. She said she would search the medical

journals for that information and I was very impressed by that, she

being the first doctor I've encountered who was interested enough to do

this. So, if I find any information about HPV and Vulvadynia, then I

will share it with you guys.

I also have a new symptom which I am very worried about and was

wondering if anyone else on the list could relate. I have suddenly

developed costocondriasis, which is an inflammation of the tendons of

the chest that attached muscles to bone. Along with this, I am having

spurts of pain shooting throughout my entire body and last night I was

so scared and in so much pain that I nearly ended up at the ER again. I

am suspecting that even though I have not been able to prove it yet, I

am seeing a rheumatologist at the end of the month, that I have some

sort of autoimmune disease, like a reactive arthritis of some sort,

Reiter's Disease my biggest suspicion. Reiter's disease is a form of

arthritis that affects the joints and the mucoskeletal system, such as

the urinary tract and the genital area. It can also affect the eyes and

the mouth. When I researched this condition on the web I was directed

to photos of people's tongues who have Reiter's syndrome and was shocked

to see sores what looked exactly like the sores I sometimes develop on

my tongue. Reiter's disease is a reactive arthritis that one can get

after having a vaginal or gastrointestinal infection. I developed

vulvadynia after two weeks or constant diahrea. I am really wondering

if I have this disorder and will hopefully get some feedback once I see

the rheumatologist. Does anyone have the same symptomology I've

described and a similar onset to having vulvadynia?

I am also very interested in MSM and was wondering if anyone has tried

it yet. Is it available in health food stores or do you have to buy it

through the internet, mail. etc...?

I am doing an investigation of pantothenic acid and glucosomine to see

whether it helps with my symptoms. These supplements are what I have

found to be most commonly used by arthritis suffers. If my suspicions

are correct and that many of us do have an autoimmune disorder, then my

symptoms should improve within the next few weeks. We'll see... So far

I have my not so bad days and my bad bad days and can not tell yet

whether anything is working. Looking forward to your responses.

Take care,

Sara

[Guest guest]

In a message dated 11/5/99 2:58:52 PM Pacific Standard Time, scor@...

writes:

<< . I

am suspecting that even though I have not been able to prove it yet, I

am seeing a rheumatologist at the end of the month, that I have some

sort of autoimmune disease, like a reactive arthritis of some sort,

Reiter's Disease my biggest suspicion. Reiter's disease is a form of

arthritis that affects the joints and the mucoskeletal system, such as

the urinary tract and the genital area. It can also affect the eyes and

the mouth. When I researched this condition on the web I was directed

to photos of people's tongues who have Reiter's syndrome and was shocked

to see sores what looked exactly like the sores I sometimes develop on

my tongue. Reiter's disease is a reactive arthritis that one can get

after having a vaginal or gastrointestinal infection. >>

Sara,

It seems that you have already done some research on autoimmune

diseases...you sound like a candidate for a group of Arthritis that also

includes Ankylosing Spondylitis, Psoratic Arthrits, and Reiter's Syndrome...I

have Rheumatoid Arthritis, and my Rheumatologist also believes some type of

other Arthritis...I have vv, the tongue thing, and various other weird stuff

that doesn't quite fall into the RA catagory..Another thing you may want to

research is Bechet's Syndrome(could be spelled Behcet's...can't remember)

anyway, some of the symptoms of that includes genital sores and inflammation

and mouth and tongue ulceration.....I am on all kinds of meds for my RA,

nothing has quite worked yet..and I still have vv pain...only good thing is

that people now take me seriously! Go the the Rheumatologist armed with

info! I think you will find a Dr. who really believes you and will try and

work with you...One more thing, do you ever get heel inflammation or

conjuctivitis in your eyes?? Feel free to email me! Take Care, Kathy

[Guest guest]

,

After complaining of muscle and joint pain, hair falling out, fatigue...for

over a year, my gyn finally did a test on the thyroid. Thyroid came out ok,

but he also did another test for autoimmune conditiions, called a thyroid

antibody test. Score Was supposed be less than 35, mine was 290. HELLO, this

is indicitative of a major autoimmune response going on in my body. I have

talked to many women with fibro who also have thyroiditis. You have many of

the symptoms as I have as far as bladder, vulvodynia, muscle /joint pain.

Fibromyalgia is also an autoimmune disorder. I have suggested to some of my

vuvlodynia budies to have this thyroid antibbody test(most docs do not even

think of it), and it is amazing how many say to me, but my thyroid is fine.

Then they request the test, and call me saying, wow, it was positive. Just a

thought. Thyroidititis, is not life threatening, but it shows your body is

attacking it's own thyroid, and possible other organs.

Have you researched guaifenesin. I saw Dr. Willems a year and a half ago,

when I first got vuvlodynia, also had fibro symptoms. He said, listen girl,

you need to high tail it over to St. Amands office, and get started on the

guaifenesin. He claims his vulvodynia patients with fibro, never respond as

well to the citrate, biofeedback etc, as others without fibro. He claimed

guaif. was the way to go. Long story, but I never tried it. Did me St.

Amand however. Wanted to be cured without drugs, plus I am addicted to herbs

for constipation which I would have had to give up.

Well, I have tried everything, and am now starting the guai. I have talked

to many women who had bad vulvodynia who are better with the guai. Helped

their fibro too. One woman had IC and vulvodynia for 20 years, since 18 yrs

old, and hadn't had intercourse but a few times up until her late thirties.

After 9months of guai, she started being able to have intercourse again. She

also has the muscle pain.

So you may want to research the guaifenesin. I was in total panic when

these test results came back showing autoimmune problems. I just new I

wouldn't test for that. Who knows, I may have had for a long time. Always

had problems with digestive process, IBS etc, fatigue, etc.

Good luck....I'm sure you will find some answers.

Jackie

[Guest guest]

In a message dated 11/6/99 1:32:08 PM Eastern Standard Time, JACKSTEE@...

writes:

<< After complaining of muscle and joint pain, hair falling out,

fatigue...for

over a year, my gyn finally did a test on the thyroid. Thyroid came out ok,

but he also did another test for autoimmune conditiions, called a thyroid

antibody test. Score Was supposed be less than 35, mine was 290. HEL >>

Hi ,

I thought this was really interesting! Those are most of our symptoms!! I

just had a thyroid test but I never asked to be tested for the thyroid

antibody test (and of course why would the doc have the foresight to think of

it herself???????) Maybe this is something we should both look into. I know

you are busy but I just had to send this to you.

Try not to wipe yourself out by doing too much!!!!!!!

Love,

Darlene

[Guest guest]

Kathy, Never feel swallowing is difficult and it doesn't look to me. Some

docs say it is a bit swollen but not noticeable. Though those are common

symptoms. One of the things they say about fibro. is that if there is a

thyroid imbalance it absolutely must be rectified for improvement to occur.

Jackie

[Guest guest]

HI Jackie,

I don't have any fibro symptoms except vulvar pain, but I thought your post

was very interesting. I assume that once you take this test and it comes

back high, there is no " quick " cure like thyroid medicine. Is guai the only

treatment you know of for people with high thyroid antibodies?

Thanks

Sandi

[Guest guest]

In a message dated 11/6/99 1:39:54 PM Eastern Standard Time,

DRUBIN0726@... writes:

<< thought this was really interesting! Those are most of our symptoms!! I

just had a thyroid test but I never asked to be tested for the thyroid

antibody test (and of course why would the doc have the foresight to think

of

it herself???????) Maybe this is something we should both look into. I

know

you are busy but I just had to send this to you.

Try not to wipe yourself out by doing too much!!!!!!! >>

Hi everyone,

I am sorry but I sent this to the list by mistake!!!!!!!!!

Darlene

[Guest guest]

To my knowledge guai is not a cure for thyroiditis, though many people with

fibro have thyroiditis. I don't know what the connection is other than they

are both autoimmune disorders. I do think however, if you get the

inflammation down, both will get better. I know a lots of people who have

had a complete remission of fibro and other autoimmune symptoms by taking a

nutritional product that deals with basic nutrients you need due to lack of

absorption from leaky gut, candida, etc, and a supplement that deals with

autoimmune conditions. This is becoming very popular in the interstitial

cystitis community. I have talked to bedridden women with bad fibro,

horrific IC, on methadone/morphine, who are now living normal lives. Some

the symptoms are 80% gone, some almost 100%. Two of the women had vulvodynia

symptoms. Unfortunately, the product gave me increased vaginal burning.

However, my point is, I believe there are ways to battle autoimmune disease,

with diet, supplements etc. My alternative docs are always having great

success with lupus, another inflammatory condition. I believe if you get the

inflammation down, lots of symptoms get better, including the thyroid.

Jackie