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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 LN , June 06, 2016

This all sounds too familiar. I have been in chronic pain since August. Primary did an ANA test that came back positive. My family does have a history of RA, but the test came back negative. The only thing that takes the pain away temporarily is steroids. I can't take NSAIDS to do an issue I had back in 95. I finished a twelve day steroid with a glorious 12 days pain-free, but now am off and inflamed again. I have had nerve test (negative for anything), I have seen Neurologist and was diagnosed with Cervical Spinal Stenosis, but doc says the chronic pain is not part of it. hmmmm I don't have the pinpoints for fibromyalgia, I sleep on the cough as not to keep my man up. FRUSTRATED!!!!!
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I want my life back!
written by Denise Roloff , March 31, 2016

Hi, I'm 42. Heart paputations started December 2014 along with my arms going numb only while sleeping.My primary care physician ran some tests on my heart and everything came back negative.Had bloodwork every 6 weeks since then because i was told i had an autoimmune disease which they were unable to confirm which one i had. April of 2015 I started with crippling lower back pain that would come and go until December 2015 where it has been permanent. I seen a neurologist and had nerve conduction tests and several different Mri and catscans.Multiple Sclerosis was ruled out. Only finding is a degenerative disc disease which I was told would not cause my problems. Meanwwhile I have been having blood testing monthly and my enemia became so severe i had to see a Hematologist/Oncologist. I had to have 6 weekly veferon infusions.Meanwhile trouble shooting with my Family Physician I told him how severe my menstrual cycle was and he sent me in for a Tran vaginal ultrasound. I was diagnosed with a mass on my right ovary, Endometrial Hyperplasia and Endometriosis. At this time I was still having arm numbness while sleeping,heart paputations and lower back pain that felt like 24/7 back labor that worsened at night and morning. And I was having my vefron infusions. Started seeing an OB/GYN. Decided on having a total hysterectomy (a whole other story)
I had to complete my series of infusions before my Hematologist would sign off on my surgery. Had my surgery on November 18, 2015, the day after my 60 year old mother passed away from stage 4 lung cancer....Which I cared for full time since she was diagnosed in April 2015. Felt great for 3 weeks after my surgery...Besides a normal amount of surgical pain.I went to restroom regularly and felt great! I thought I finally had my life back!
Around December 5 all my symptoms came back with a vengeance.
My pain was and still is worse than ever, my arms go numb continously while I'm asleep, I am now so used to them going numb that I've been sleeping through them going numb and have more problems trying to get feeling trough them when I do wake up, they burn and pinch, hurt and I have started to drop things when I use my left arm. My fingertips go numb while I'm awake and my forearms burn. I'm losing arm strength and feel I am permanently causing damage in my arms and hands sleeping through. I went back to my primary care physician in beginning of January finally after many visits (every 7-10 days for 2 months he sent me for another Tran vaginal ultrasound. I now have a ruptured bleeding cyst on my right ovary. Now I am on tramadol, flexerill percoset 10, abilify (depression ) Ativan (anxiety) and antibiotics. ... I am now seeing my obgyn, Hematologist,primary care physician, Nuerologist and a rhumatologist (mispelled)
I WANT MY LIFE BACK! !!!

Other symptoms. .. Low grade fevers, hotflashes, insomnia, 42lb weight gain in less than 1 year (dropped 12lb in past 2 weeks not trying, extreme confusion (feels like I've lost all ability to focus on even simplist tasks) fingertip numbness throughout the day, slight cheekbone rash out of the blue, nausea, lump in throat and trouble swallowing, puffy eyes hand and feet and did I mention...SEVERE PAIN ALL OVER


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No Diagnosis
written by Elyce , February 10, 2016

Hi,
I'm female, 28yr's old... I am so frustrated and getting scared now after 12 months of tests and specialists trying to diagnose me and have come up with nothing... It started out after I had to sadly have a termination, after the op. I woke up in pain.
No one seems to think this is what caused my problems to date and I am so lost, I don't know myself anymore... I have a lot of stomach/ bowel problems now, I have irregular (if any) menstrual cycles, often always mostly old blood, which come to think of it, after the termination, I was bleeding and in so much agony with stomach pain, I bleed out for two months, mostly that same old blood. How can they rule that out? What the hell is this!?!
I have had CT scans, ultra sounds, stool samples, blood tests, colonoscopy & endoscopy.. What is next, what is this... I'm going crazy......
Please help if anyone has any suggestions!?!
I'm getting so depressed, I've lost my job due to lack of concentration as I spend majority of my days in SO MUCH PAIN.
Please, Please Help!

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Can't get a diagnosis can anyone help
written by donna , November 12, 2015

Had a hysterectomy Feb 2014 left my ovaries in. A couple of weeks after the operation I had an infection had blood in my urine was treated with ciprofloxacin i got better but it returned in a few weeks was treated with ciprofloxacin again it went away this continued for a year every 4 to 6 weeks. Ended up having a camera in my bladder and was told I've never had a uti. I have a temperature of between 37.4 to 38.4 most of the time now I have numb feet and hands most of the time I suffer with bad headaches.i can't stand for more than 30 mins with out my back hurting badly. It feels like a bee is stinging my arm. I have burning pain in my neck and in the back of my head. When the physio presses my spine it burns. The doctor has put me on 6 months of antibiotics but I'm still getting the symtoms one specialist says it's hrt so im on patches for that now as well and im on amtripiline for pain also have a under active thyroid so on 10mg of thyroxine. Who can help me I'm so fed up. I'm 46 years old

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AUTOIMMUNE DISEASE
written by ROSEMARY BETTS , September 03, 2015

I HAVE HAD BLOOD TEST AND WAS TOLD THAT I HAVE THIS DISEASE, AUTOIMMUNE I WAS GIVEN A STEROID SHOT WHICH HELPED FOR ABOUT TWO WEEKS. I AM STIFF,WITH SO MUCH PAIN IN MY HIPS AND MY FEET I CAN HARDLY WALK.
MY REGULAR MED.DOCTOR HASN'T OFFERED ME ANY TREATMENT EXCEPT STEROIDS.I NEED SOMETHING TO HELP ME LONG TERM.
WHAT OR WHERE DO I GO FOR HELP

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vitiligo
written by Hunter , August 24, 2015

My son was recently diagnosed with vitiligo. Do you have any suggestions on how to treat root cause...the immune system. Thanks.
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autoimmune disease
written by Deborah Gibbs , August 06, 2015

Hello, i have been ill for a long time with numerous symptoms which include [pain in joints and muscle, fatigue, low iron, vitamin D deficiency , urine infections, most recently wheezing and continual cough, breathlessness, and blood in urine. I've had numerous blood tests and have been told I've got an autoimmune type illness, that is attacking my blood vessels in my lungs and kidneys. But still have not been given a proper diagnosis. My Consultant referred me to a Rheumatologist who i am yet to see at the end of the month. I just cant wait to start some treatment, other than Steroids, that ive been given, so that I can start getting my life back!
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written by Natalie , May 13, 2015

My daughter has been told she has Me and FM that was 7year ago now they are saying it a rear otom d she is house bond incontnimt losing her hair in pain head toe can you help her as she feels life not worth living

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no diagnosis
written by robin , February 08, 2015

I have been to so many doctors in the last 4 months and i am so disapointing... if someone will please help me..
I just woke up one morning after working out not feeling right. I am 32 female. 2 kids tubal ligation.

I woke up with tension headaches..i turned to er they did ct scan said i was fine
Went to see doctor he gave me injections and thought i was ok but noticed i started having ringing in my ears and jaw pressure and scalp tenderness.i saw an ent and he said tmj. I went to a neuro.she diagnosed occipital nueralgia. After doing 2 mri and 1 mra.
I dtarted having chest pain and went to cardiologist. Had chest x-ray d-dimer and ekg, echo, and stress test all normal. I am scared its a blockage. I am so worried sometjing is going on.

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autoimmune
written by Laraine Sheers , January 07, 2015

Ramzi our body only gets sick and has symptoms because something foreign has entered the blood stream.
Get a hair analysis and find the cause then you can cure the problem.
I am sick and tired of telling people the easiest solution.

cheers Laraine

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