Immune Disorder or ?? - Immune Disorders Message Board

WYdewd · 07-11-2002, 10:48 AM

For the past six months I have had chronic headaches, diarrhea, and shortness of breath. My face is always flushed, even if I have the chills. In June I had had a ruptutured eardrum from an ear infection, tonsillitis, thrush and Leukoplakia on my tongue. I am exhausted all the time and my limbs feel heavy when I try to move them. I have had severe pain in my right abdomen, which was thought to be an appendicitis, but the pain left the next day. Now I have either pain in my right side or nausea. I have been tested for HIV, hepatitis, Liver problems, Mono, Strep, and had a Lymphocyte Enumeration test to check my T-cells. All test came back normal, except my SED rate was high(68) and my WBC dropped from 6.5 to 4.3.
I am being sent to a Doctor of Internal Medicine on Monday, but I am beginning to think maybe I am overreacting, but I seem to feel worse everday. Could I have an Immune Disorder, or is my imagination. I am a 33 year old male, and about 35 pounds overweight. I have not lost any weight even with not being able to eat anything but Jello when my throat was so bad, or when I am nauseous. Please give me some insight.

mishl33 · 07-12-2002, 06:06 AM

hi, i do sympathise with you as being unwell for any amount of time can be frustrating and worrying. could be an autoimmune disease but anything is really possible. there are about 70 differnt autoimmune diseases and they are very hard to diagnose as symptoms overlap alot on most of them. a specialist will probably do a bloodtest that will show if there are abnormalitites in your immune system. sometimes an immune disease can actually take a couple of years to show in your blood work. i have been ill for two years now and it has stopped me from working. doctors have done many tests which show that my immune system is attacking my body and they are pretty sure i have a or some different immune diseases but i am still undiagnosed as i said immune diseases are very hard to diagnose. the worst part is not knowing whats wrong and not having a name for your illness. i have extremely bad fatigue and sleep most of the time but fatigue can be associated with so many illness, same as muscle and joint pain, nausea, hair loss, head aches, and many more.
no one really knows the causes of immune diseases but they can sometimes be triggered by a bad viral infection or sometimes they think they might be genetic but scientists are still investigating all this.
i wish you all the best and i hope the specialist can shed some light on your medical condition soon so then you can hopefully have some relief.

scbagrrrl · 07-28-2002, 01:46 AM

Dewd-
I agree with everyone else - get referrals for the best Rheumy around. THEN have your doctor call him/her to get an appt for you. (Great way to get around waiting months to see one) Make sure your chart gets over to the Rheumy before the appt. Ask if they can do bloodwork prior to your appt so the results can be addressed in the prelim appt.

And, above all, be persistent. Most of us diagnosed with autoimmune disorders have been thru the ringer getting the diagnosis. Get copies of ALL test results -keep a file, take it to your appts - ask questions. Research on the web - they tried to pin several diseases to me that "just didn't fit" with what was going on. It was my research and asking to be tested for Lupus that finally led to the diagnosis.

My initial problem was chronic unexplained diarrhea that lasted for six weeks and disappeared as quickly as it began. I've never had the problem again. They could never explain it despite all the tests done. I did lose a lot of weight - I lived on Powerade most of the time.

Don't be afraid to "fire" your doctor if you're not getting the care or level of attention you feel you deserve.

Take care and keep us posted.

desertwinds · 07-30-2002, 09:28 PM

Have your doctor do a lupus panel on you just in case.

[This message has been edited by moderator2 (edited 08-17-2002).]

scaredspittless · 12-18-2002, 10:39 AM

Read my story and tell me what you think. I have a lot of stuff that you have and have had many hiv tests and no answer's.

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