Autoimmune diseases --Elaine or anyone

[Guest guest]

I recently saw an article you wrote about the prevalence and variances of

autoimmune diseases which prompts this email, Elaine.

I don't know if you saw the one I wrote while you were away but I have been

having some new and significant problems.

I don't know if it's Graves related or not but it is sure a problem for

someone who makes their living on their feet (head trainer and server/bartender

in

a restaurant with regular 12 hour shifts).

Two weeks during work, my right leg starting hurting from the middle of my

buttocks straight down the back of the leg.  Within an hour or so, I literally

couldn't walk without wanting to scream out.  I've never had discomfort like

that before.  I've never called in sick to work in over 5 years, not even when I

went every morning 1 1/2 hours away for orbital radiation.  So NOT working

because of discomfort is not like me at all.  In fact, I pride myself on being

stronger and more durable than all the young'uns I work with:-)

I had to leave in the middle of my shift.  I saw the doctor and he said my

muscles had gone into spasm and were squeezing on the sciatic nerve causing the

pain.  He told me I needed complete bed rest (NOT LIKELY since I live alone

and pay my own bills).  He gave me vioxx and flexeril.  He did not think it was

Graves related, but my sed rate and antibody rates are still very high. 

Two weeks later, it's still hurting, as are other muscles in my neck, my back

and my calves. There is muscle weakness and fatigue is a big problem. He

ran several blood tests and the results are:

My CRP is 2.0 (range .50)

My Sed rate has gone up to 63 (range 20 -- last week my rate was 43)

My RF screen was positive

My RF Titer was 320 (range 20)

He also ran an ANA test and I don't have the numbers but his nurse told me

yesterday they were also very high.

My TBII antibodies remain high at 32%. Eye problems continue with double

vision and headaches.

But my doctor says that with autoimmune diseases, these results don't mean

anything definitive because they mask each other.  He did range of motion tests

with my joints and they are fine.  But every muscle he pushed hurt, some to

the point where I wanted to hit him back:-)

He is sending me to an ear, nose and throat specialists because the glands

remain swollen (and have been for 3 months now). And he is sending me to a

rheumatologist. Both appointments are later this month.

He thinks I might have something else autoimmune going on beside Graves.  Is

that common?  I didn't have any of these problems when I was first diagnosed

with Graves in 1979.  And then none of them during these 20-odd years of

remission. Is it likely these things are related?

What kinds of questions should I be asking the specialists?

To be perfectly honest, I'm a little sick of being sick:-)

BTW, Elaine, has your GO book come out yet?

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Underwent

Orbital radiation June-July 2003. No change yet.

[Guest guest]

Hi Terri,

I vaguely remember seeing your post when I returned from New Orleans, but

that was during my dental crisis so I didn't recall the final verdict.

It's true that tests like ANA can be positive in a number of different

disorders and even be positive in normal people, the RF result is more specific.

Your elevated RF titer, used to quantify the positive RA test, suggests a

rheumatological disorder. The most common one would be rheumatoid arthritis,

which is

an autoimmune disorder. Other possibilities are Sjogren's syndrome, mixed

connective tissue disorder (MCTD), scleroderma, CREST syndrome, polymyalgia

rheumatica, Reiter's disease and fibromyalgia.

People like you and I who have had RAI appear to have a higher risk for

developing other autoimmune disorders because of the immune stimulation related

to

radioiodine. These disorders are often accompanied by inflammation and swollen

lymph nodes.

Your rheumatologist should be the most helpful in diagnosing your condition,

but even then it can be tricky since many of these disorders are associated

with alternating flare-ups and periods of remission. And many of these disorders

resolve on their own.

Diets that focus on limiting inflammation can help. For instance, avoiding

sugar and saturated fats reduce inflammation. And for some rheumatic diseases,

nightshade plants like tomatoes cause flares. For people sensitive to wheat,

reducing gluten products reduces inflammation. Ravicz's Thriving with Your

Autoimmune Disorder has some helpful information as does The Perricone

Prescription

.. Some of these disorders are also precipitated after a viral infection.

Through a process of molecular mimicry, the immune system can target tissue

antigens while trying to fight infection. For instance, after a salmonella

infection,

many people will develop a form of septic arthritis. Hope this helps and that

you feel better soon.

They're fixing the cover on the GO book and expect it out any day now. I

hadn't worked with a Canadian publisher before and I'm finding the publishing

process to be much slower than I'm used to. Best, Elaine