Need some advice, please!!! - Immune Disorders Message Board

shirimaru · 11-09-2005, 01:57 AM

I have been fighting what seems to be a losing battle for almost a year to find out what is wrong with me. I know only that I am autoimmune, with symptoms of blisters on my body, in my mouth, and in and around my eyelids. They are worse sometimes than others, but nothing seems to predict when. I also have fatigue, pain, swelling in my hands and feet, and frequent migraines. I cannot eat like i should, my throat feels as if it is blistered as well, so have lost quite a bit of weight way to fast. My doc has run all the tests she can think of, but they show nothing. she has sent me to an ENT, who sent me to a dermatologist, who biopsied and told me i didn't have cancer (which i already knew, and was so not what i asked him to look for) I could use some ideas on maybe what tests i specifically need to request, or specialists my doc can refer me to, as i live in the middle of nowhere, and they haven't seen anything like this around here before.

lfoster21 · 11-10-2005, 03:05 AM

I dont know if this will help, but here are some of the more common skin auto-immune disorders.
* Alopecia areata
* Pemphigus/pemphigoid
* Psoriasis
* Scleroderma
* Systemic lupus erythematosus
* Vitiligo
you can google or yahoo each and get an idea of the symptoms and ways to Dx. each.
Good luck and keep us posted.

Lorie

shirimaru · 11-10-2005, 09:27 PM

Thanx so much, at least it gives me somewhere to start!

Hope J · 11-12-2005, 09:35 PM

A few years ago I was diagnosed with Raynauds after my hands (and feet) began swelling and turning bright red (they usually are freezing cold). At that time I got a few blisters on my hands. I still get them in my mouth. I had (and have) an odd array of other symptoms as well. I was diagnosed with mixed connective tissue disease. It has symptoms of various connective tissue/autoimmune disorders including lupus (of which Raynauds can be a symptom) and RA. I can empathize with your frustration. Maybe your doctor has already checked you for connective tissue/lupus, sometimes it can take a long time to diagnose. I was referred to a rheumatologist who then diagnosed me. I just know that it certainly caused an "interesting" array of symptoms that made me think I was going crazy! It may be worth checking if you haven't reasearched it yet.

BarbaraH · 11-13-2005, 11:47 AM

Hi -

I suggest you look at the stickies at the top of the lupus thread about symptoms of lupus and about antiphosphoidlipoid syndrome for more information that may be helpful to you as you seek an answer to your health problems.

If there's a chance you have lupus, stay out of the sunshine. If you need to be outside, wear long sleeves, long slacks, and a hat. For some annoying reason, being in the sun for even a short time makes the fatigue, aches and pains of lupus much, much worse. If you have lupus, it will amaze you how much better you'll feel if you avoid the sun.

Wishing you well - Barbara