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Autoimmune Disease: Can't Get a Diagnosis? Here's What to Do

neck-pain-autoimmuneby Ramzi Khairallah, M.D.

Q. I have many symptoms but no diagnosis. I’ve had doctors say “you may have” muscular dystrophy, sarcoidosis, rheumatoid arthritis or Sjogren’s. I'm trying to decide what type of doctor to go to and what to take. I take aspirin. I have heard of Natur-Leaf as a supplement to help get the immune system in check. Any other simple ideas?
— Debra, Wisconsin


A.
Trying to get a diagnosis when you have symptoms that could apply to a variety of diseases can be frustrating—especially when there’s no definitive test for some of those diseases. Most of the time, it just comes down to patience and persistence. But it helps to understand what you’re probably facing and where to start looking for answers.


WHY CAN'T I GET A DIAGNOSIS?

The reason doctors have to say “you may have (whatever disease)” is there's not always a test that can give a diagnosis. This is very much the case for many autoimmune diseases (which all the ones you mentioned, except muscular dystrophy, are). In fact, most of the tests available for such diseases are for screening. They're only meant to help with the diagnosis, not provide one.

For disorders like these, doctors often have to rely only on a physical exam and your family and personal medical histories.


HOW DO AUTOIMMUNE DISEASES MAKE YOU SICK?

With an autoimmune disease, instead of attacking only outside organisms (bacteria, viruses, fungi), your immune system has turned against parts of your own body. This can lead to fatigue, pain, weakness and all sorts of other general symptoms that don’t help a doctor diagnose you with anything specific.

We do know that some of these diseases are inherited. And some people have genes that make them prone to developing a certain disease, but something has to trigger it to kick in. Though it’s not always clear what those triggers are, environmental factors (infections, exposure to chemicals) often play a role.


WHAT KIND OF DOCTOR TREATS AUTOIMMUNE DISEASES?

You may have to see different doctors before getting a diagnosis. Most autoimmune diseases affect more than one system and can cause symptoms throughout the body. A rheumatologist usually treats those. Other diseases are limited to one system, so doctors who specialize in those specific systems treat those. For example, neurologists treat multiple sclerosis and gastroenterologists treat Crohn’s disease.

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HOW DO YOU TREAT AUTOIMMUNE DISEASE?
Most autoimmune diseases are chronic (long-lasting) and, although they might go into remission at times, the purpose of treatment is not to cure but to control them, prevent complications and possibly slow down their progression.

The main focus of treatment is suppressing the immune system. As you might imagine, this can make you prone to infections and other serious problems. But these days, some treatments are so advanced that they suppress only the part of the immune system that causes the disease, leaving you less prone to side effects.

Unfortunately, most studies have shown that dietary changes or supplements don’t help combat, delay or prevent most of these diseases. In fact, because we treat patients by suppressing their overactive immunity, there is a fear that “immunity enhancing” dietary supplements can trigger or worsen some of them.


WHERE DO I START—HOW CAN I GET A DIAGNOSIS?
If you have musculoskeletal problems, the only way to get treatment is to keep seeking out good doctors until you get an accurate diagnosis. Start by seeing your primary-care provider (such as your family doctor), and ask for a referral to the type of specialist he or she thinks you should start with.

Also, keep in mind that symptoms like the ones you describe don’t necessarily mean you have an autoimmune disease. You may need to wade through a lot of options before pinpointing anything specific.


RAMZI KHAIRALLAH, M.D.
, is a board-certified rheumatologist with Arthritis Health Associates in Syracuse, N.Y.

Last updated and/or approved: May 2010. Original article appeared in summer 2007 former print magazine. Bio current as of summer 2007. This article is not meant as individual advice. Please see our disclaimer.

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Please help with my son's autoimmune diseases
written by Sarah Banks , October 16, 2014

Hi Everyone,

My son is 13 and has been on a managed gf diet for the past six years due to CD. He also has Vitiligo. He had Kawasaki Disease when he was four. He had jaundice as a baby and was born at 36 weeks. He has had H1N1, pneumonia, asthma and wheezing over the past few years. He has severe allergies to 35 of 38 allergens on a recent allergy skin test. Mostly Mesquite, cat hair, grasses. Food allergies were not tested at this time.

To make matters worse, our G.I. doctor just noted during a recent endoscopy that his villi are completely atrophied, and his intestine never healed in the six years he has been gluten-free. We are very good about avoiding cross contamination, handwashing, he has a separate toaster, and a separate strainer for pasta. On a good note, his large intestine has no inflammation according to a recent colonoscopy. What else could be causing the villus atrophy? Soy? Corn? If the only part of his intestinal track that is still sick, his duodenum, could this mean Crohn's? On the marsh test, the villi are considered stage 3C.

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May have an autoimmune disorder
written by Carey Shea , October 04, 2014

I have joint pain, excessive dry mouth (meds haven't changed), sudden hair loss, headaches, Chronic fatigue, PTSD, chronic insomnia, confusion, memory loss, forgetfulness, dizzy, blurry vision, too much stimuli like many people talking shuts me down by making me ill and headachy, concentration hurts my head, I avoid people now because i can't handle the stimuli. I have had 4-5 concussions since 2000 due to horse accidents. My latest one occurred on 4/2/14 and was a dewsy. I am currently on Depakote which I will take for a year. I take 500 mg at night and 500 mg in am. It makes me so groggy that I can barely get out of bed. neurologist said I can reduce dosage in am to 250mg. Some of my symptoms I have for years like headaches, migraines, excessive dry mouth, chronic insomnia. Is this an autoimmune disorder? What kind of doctor should I see? Thanks for your help!
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positive ana and all sings of lupus but no diagnosis
written by kaylee , July 27, 2014

Im 16 and for years I have been trying to find answers. I found a doctor a few hours away but he doesn't know whats wrong but wont admit to it. All he does is draw blood and make me feel like im making it all up. I have positive ana and every sign of lupus but thats all I know. It started out a joint pain and it progressed over the years. Its affecting my sports a lot and school. But I cant do anything about it because I dont even know whats wrong and the doctor make me feel like im just crazy. But my family doctor is doing her very best to find me a good doctor to help and she is helping me the best she can. So I understand how yall are feeling on this. Its very stressful, long, and confusing. (Not to mention painful)
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ITS LYME DISEASE
written by Trish , June 23, 2014

It is Lyme disease and all of the coinfections that go along with it. Read forums online about it. You will see. If you have had it for years like most of us your Elisa and western blot will be negative.
You have to receive a couple weeks of doxycycline or amoxicillin or another Lyme antibiotic just to test positive.
When you have it for years it is not detectable in the blood. It is hiding in every part of your body but your blood. Antibiotics cause the bacteria to "run" and then it will show up in a bloodtest.
Don't give up. Find a doctor who believes Lyme disease can be chronic. They are called LLMD's and yes they are hard to find and hard to afford. Also look into herbal remedys if you have no insurance. They work too and sometimes better. There is no cure yet just ways to get a little relief. Your not crazy though. Promise. Good luck!

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...
written by Linda2123 , May 08, 2014

LYME DISEASE
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...
written by Vesna , May 05, 2014

Lorraine where is dr Linda Johnson Pearl? My daughter has been sick over year and a half . After so many doctor visits and no diagnosis we are desperate for somebody to care and help with any Info ..... She is limited to what she can eat , she can not take any meds ( adverse reaction ) And we don't know where to turn . She also can not metabolize Animal protein ,processed sugars or any grains.... Help ,
Ves

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D.B ...me too!
written by Ellen Richie , January 17, 2014

DB, I I don't know who you are but this is me,
what you described as your symptom's...i have all of
those as well.wish we could speak. One Dr said,"like lupus" to me.
how do you have ...LIKE LUPUS?
very frustrated in Illinois!! ER

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To D.B. October 2012
written by Leila , July 27, 2013

Have you been tested for Lymes disease? The test is not always accurate, but some of your symptoms sound like mine. Diabetes would be a second guess.
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D.B.
written by Muffin , June 07, 2013

Did you ever get a diagnosis or any help?
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NEED ADVISE
written by CONNIE , April 23, 2013

Hi i have two surgery two biopsy both come out same results Granulomatous Inflammation first biopsy was last year 2012 from my left breast and second one was this year 2013 from my legs same results is that mean this thing is spreading??my doctor are confused and test me for so many things I am tired of surgery and biopsy is a time consume me and my husband they dont know why? what diseases? I have so far 45 blood test and 6 doctors and they just giving up and try to help me so I dont know what to do and what doctor should I see next maybe an Immunologist??so far i have been see by:Rhematologist,Hematologist,Oncologist,Infectious Disease,Internal Medice,Dermatologist and they didn't help me..
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