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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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written by Joe Field , June 19, 2012

Over 3 years
Severe pain in hands and feet with left upper abdominal and back pain and multiple urinary infections & Tia
Low c4, raised ferritin,B12,CSF protein,Ace and positive antibodies to Lyme
10 hospitals & 27 different specialists
4 MRI ,5CT,7 ultrasound, 3 lumbar puncture,14 ECG ,150 X-ray ,barium swallow, Dtpa, Toe , 2 carotid Doppler , Cystoscopy , 2 EEG , 2 emg , sural nerve biopsy , Bone scan and enough blood tests to render my whole body dry
No diagnosis
Help


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ray pearcy
written by Laraine , March 17, 2012

you have mercury toxicity...even if you had your amalgams replaced years ago, if you didn't detox it from your system it is still inside you creating havoc.
get a hair analysis and and it will prove I am right.
regards
Laraine

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Help!!!!
written by Shelley Crocker , September 03, 2011

HOW TO FIND HELP AND HOW MANY DR. DO YOU GO TO BEFORE FINDING ONE ? I was sick with hyertyroidism in 2009. I was operated on, had five large "hot" nodules removed. And have been sick since. I have already been to my 8th Dr.as of yesterday. I are autoimmunec diseases recognized at all by the mainstream medical community?My numerous phsyical,nerological,even mental e.g. brain fog,depression have been for the most part brushed off. When I ask the Dr. What is causing all my symptoms for the most parts( since etreme fatique is main symptom along with muscularskeletal problems). They tell me to get a sleep study. Last Dr. suggeated a rhuemetologist. I have seen 4 endocrinogst,a heart Dr. A orthopedic, and my 3 (group) of the Primary care Dr. In my group. AND I STILL HAVE RECEIVED NO HELP! I was so discouraged yeaterday, that I just came home and cried my eyes out, and am still crying today. I have lost family,friends,my life is on hold because my symptoms are debilitating. And, I can't get help. Can anyone out there Help me? Or tell me where I can get help? I'm desperate,2.5 years of suffering. Thank You
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to rae purcy
written by Laraine Sheers , July 07, 2011

I would be having a hair anlysis done because I guarantee if you have silver fillings you have heavy metal toxicity. I had that and the same symptoms as you.
Get a hair anlysis done and check the readings of mercury.
good luck
cheers Laraine

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nurse practitioner
written by Rae Pearcy , April 29, 2011

I am so ill that i believe I can't live much longer and cannot get a doctor to diagnose me. what can i do ? I know enuf about my symptoms to suspect autoimmune source or even porpheria. It began with one leg swelling up to three times its size whie i was asleep. as the swelling subsided, the other leg began to swell. then they began to break out in an itchy rash with bumps on bumps and sume deep blister like bumps. when i did the ace wrap thing the fluid went up into my thigh and then when i persisted it went into my system and i began to get short of breath and one night i had laryngosypasm after another but i was able to pass some air into my upper airway, like "puffs" when i went in to the dr he checked my pulse ox and my tidal vol and listened to my heart and lungs and took chxr and thought that i was ok and sent me home. i continued to have shortness of breath and went to er where i got admitted for chf. i knew i did not have chf 00000000000and the dr knew it too but when i tried to talk to him he walked off. I w3anted him to check for antibodies and to do a biopsy. Instead he did a cxr and checked to see if i had a bloood clot which i did not my circ was intact. my ejection fx was 50%. my heart is probably borderline for chf. But i am old . . . 79. This problem began in Dec around Xmas and it is still perking, my rash is terriblle today and itches itches. I get short of breath with eating, drinking, walking across the room. I have had excellent lungs up until now. The tests did show my thoracic aorta was unraveling which i interpret to mean that i may be working on an aneuryism. The doctors simply refuse to make the tests that would shed light on my problems. Lasix is pshing the antibodies thru my kidneys and pretty soon i wont have any.

Please, Please tell me what I can do to get diagnosed.

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written by Dr. Johnson-Pearl , September 13, 2010

The above statements are typically of *mainstream medicine* views from doctors who are basically ignorant of the healings of alternative medicine.
The comment: "Unfortunately, most studies have shown that dietary and supplements don't help combat, delay or prevent most of these diseases." This simply is NOT true. Diet AND supplentation is critical in the healing of ALL disease. Primary care physicians are only adept at administering drugs to their patients, which in essence just bandaides disease rather than getting to the core issues OF the disease.
Dr. Lynda Johnson-Pearl

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