Autoimmune diagnosing problem

Hi @brie87144, and welcome to Connect. Thanks for sharing your journey and frustration with the community, even though I know it hasn't been easy. You mentioned that you often feel so tired that you're unable to get out of bed, so I'd encourage you to check out this discussion on autoimmune diseases and fatigue (http://mayocl.in/2aa7M7r). It may not provide you with all of the answers, but members are sharing their experiences with fatigue.

Here is some additional information from Mayo Clinic on balance: http://mayocl.in/29Pz93b. It include common symptoms as well as a few treatment methods that may help your balance.

Your pins and needles sensation could mean many different things. I'm tagging @jenport and @rabbit10 who have discussed this feeling in the past and may be able to offer some advice. Keep us posted on any updates.

I have been going to doctors for years, being treated for Hasimotes disease. Everything was cool until the last few years. I am being plagued by fatigue, joint aches lesions in the mouth and tinnunitis. I have been to two rheumatologist, both said I have and autoimmune disorder, but don't know what. I am currently on Plaquenil for the last month with no relief. My question is how long does it take to get a diagnosis.

Don't give up. There is always a little bit more that can be checked, a fresh set of eyes could make the difference. Have you had an expert work up by a rheumatologist/immunologist? Have the basic autoimmune markers like ANA been checked and inflammation or lack of it noted? I can't pretend that I would catch anything that all of these experts have missed. I've heard of strange syndromes following an infection like:
http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm
but there are less obscure things that can cause strange overlapping symptoms, like Lyme Disease.

If you haven't seen an rheumatologist/immunologist put that next on your list. If you have, you might want him/her to check for more antibodies. I was very sick for several years and kept going to the doctor and complaining about it. They ran lots of blood work and found nothing other than mild anemia and that I carried HLA-B27. I started having episodes of freezing, shaking and weakness lasting several hours. Eventually I collapsed in the waiting room and when I was admitted into the hospital they ran some tests and told me that I had Grave's disease and was experiencing thyroid storm. Not a parallel with you but the point is that I bugged them for several years and it turns out they never ran thyroid tests until I almost dropped dead. Even good doctors can have a blind spot so you have to be a squeaky wheel, unpleasant s it may be. Hang in there.

Hi @wesbig. I moved your message to this discussion started just today by @brie87144. I bet she can relate.

Also, I'd like you to meet @johnwburns too. He's quite familiar with the things you talk about - autoimmune disease, fatigue, Plaquenil and navigating your care. Here are a few discussions you may be interested in:
Autoimmune diseases and fatigue http://mayocl.in/2aa7M7r
Mycophenolate mofetil with Plaquenil http://mayocl.in/2avQVdd
Hypothyroidism/hashimotos, endometriosis/liver lesions high ast/alt http://mayocl.in/29OwXcX

Disease modifying drugs like plaquenil can take months to provide any relief. As far as what autoimmune disease that you may have, did you get a summary of what tests were run? The main things they'll look for with systemic involvement are Lupus, Rheumatoid Arthritis and possibly Sjogren's if you report dryness. Here is a link to something about autoimmune diseases that seem to cluster with autoimmune thyroid disease:
http://www.ncbi.nlm.nih.gov/pubmed/20103030
This calls out a couple more:
http://www.medscape.com/viewarticle/760417_3
But please don't start thinking that you have everything. Its a process of exclusion and can take months so try and be patient. Since you are being given plaquenil I might guess that they think that you have Lupus but some fairly common antibody tests would confirm the what the trend is.

Thanks for your reply. I have been tested and carry HLA B27 . ANA is low positive , moderate range for lupus although all makers were negative. Not quite sure where that puts me. I am new to all this.

Thanks for your help.

Hi, I am new to Mayo Connect. Tonight I had an honest chat with my chiropractor of close to seven years. He has seen my illness progression with care at least 1ce a week. The discussion went-Terri you are getting worse despite all the specialists and many tests that don't show anything wrong. My definitive tests are low cortisol/Adrenal insufficiency; extremely high anti centromere ANA; a tiny sacral fracture at s4; L4/L5 disc herniation, Raynauds, GERD. I suffer from small intestine bacterial overgrowth. I need to have my esophagus stretched periodically. I have glaucoma, nystagmus. i have mild obstructive and central sleep apnea.

I am on 20 medications, cpap, have started using a walker (prior I had a cane).

I have fallen 4x since early July-with falls that have resulted in my sacral fracture and earler this week one deeply scraped knee. I have had trouble feeling the upper half of my feet since winter.

So now a step back. My health history from a baby was one of chronic infections and clumsiness(falls) that resulted in trying ballet school to give me my lacking gracefulness. Unfortunately I was bound to be someone who would fall....college field trip to Costa Rica and I met the earth many times...3x in 2 weeks. Pre-med students said I needed eval of my ears. I actually almost lost my hearing due to a major infection before I graduated. Grad school I had signs of POTS as I found my tressured references hidden on bottom book shelves. Walks around campus Ivwould periodically fall-sometimes alone,sometimes to the disbelief of professors and colleagues.

Through grad school I would have crouppy respiratory infections. Every 6 weeks like clockwork i needed antibiotics. At home, roommates would complain my hair was everywhere. ivwas always losing hair. Colleagues thought I was anorexic when I truly was eating.

Then I graduated and entered the work force paper thin, and really sick, without a clue of what was wrong. The next ten years were tough. I was lucky to last a year at jobs. I would quit because the physical-ness or stress just shut me down. Those years I didn't have insurance; pre-existing conditions were a factor when I tried to get insurance.

Beginning in 2004, my life really changed. i almost died of bowel obstruction/stenotic lesion. Then every 2-3 years I kept landing in the ER- PE /heart attack fear that turned out to be GERD-but they gave me coumadin to be safe; ischemic colitis which was initially called hemorrhoids; and severe muscle spasms.

In 2005, a pain management doc gave me a death sentence. He told me I had disautonomia and to get every book on it and that people usually survive 7years from diagnosis. The death sentence made no sense...unless he thought I would have multiple system atrophy (Shy Drager Syndrome).

So finally in 2008, I got a steady job and health insurance. I told my PCP I had clinically expedienced scleroderma attributes-so he sent me to a rheum, who also connected me to a GI specialist.

I ened up at a clinic focused on arthritis. I was treated for muscle pain/arthralgias and in 2011 got a SLE (LUPUS) diagnosis. i was started on Benlysta infusions in 2011.

i ended 2014 with a month long upper respiratory infection. Thenthe slide continued-about 3 months of vomiting, interspersedvwit periodic incontinence. i moved GI care to a local teaching hospital. 5 months later I moved primary care there. 4 months later moved rheumatology care too, and gained other specialists.

But here's the problem-my care became very distributed-specialist silos. No one looking at the whole me.

Docs unwound the scariest meds-metotrexate,nuvigil. And...with the opiod abuse crisis abundant, no one would own my Butrans patch. So I quit cold turkey.

So here I am today with a list of diagnoses, using udifferentiated connective tissue disease as a catchall that would be worse jargon than lupus, scleroderma, etc...which urgent cares and ERs dont always recognize half the time.

My eyes started giving me trouble over last 4 months. I had inflamation of my eye orbitals and slight bulge. Endocrinology Evaluated for Graves- but it is not. One test, TPO had positive antibodies at 35. The standard is 60 to treat positively...but Mayo uses 9 Um/L. So inside I still wonder if I have Hashimoto Thyroiditis. Alternatively I asked my eye doc about Myasthenia Gravis. I tested positive for 1 of 3 tests. So he said I had it. But Nurologist said binding antibodies were okay (top of okay range).

And here I am, in a mire of chemicals, with no real effort to stop sliding worse. struggling to understand my conditions and feeling like I am getting worse. i have EMG next week and pray for real results. Last EMG, the doc said, even if you have MS what are you going to do?

My chiro said reach out-stop the downward spiral.I am on too many medicines and how can we know what is working. I feel like going off ben.ysta infusions was a mistame and now I have all this eye trouble and physically feel a downward slide with muscle weakness, falls, imbalance.

So this is my story-how do I get better so I can function safely at work. Are my diagnoses right or am I a bunch of unrelated puzzle lieces requiring lots of meds and still spinning downward. Have we done all the right tests? God i am waiting to hear ypur illness is all in your head...while my heart says I am too young to be giving up-bit I have fought illness my whole 52 year life (4 years past my expiration date).

Thank you for hearing my story. I feel my experience is just like many others...we just want to be understood and recover to enjoy life fully..

Hi @dogmamat, and welcome to Connect! I moved your message to this thread as it's been active with members discussing autoimmune-related symptoms and the uncertainty of not having a clear diagnosis. @wesbig, @brie87144 and @johnwburns - please join me in welcoming @dogmamat to this discussion!

I just pulled together a couple of sites that might help you navigate through the maze of the testing and diagnosis.
You probably know that HLA-B27 is strongly associated with a family of diseases but having the marker in no way means that you have one of them. I carry HLA-B27 myself and do not have aa problem related to it that I know of.
http://emedicine.medscape.com/article/1201027-overview
I couldn't find much about HLA-B27 related disease, if that's what's suspected, being treated with plaquenil but that doesn't mean that it doesn't happen.

This might help you as a guide to lab tests for just about every autoimmune condition. You'll need to page through until you hit the list of diseases then follow that to tests:
https://labtestsonline.org/understanding/conditions/autoimmune/
Since you are not on a powerful anti-inflammatory like prednisone I assume that your ESR and CRP were ok.

Sorry if you mentioned this but did you report having any skin problems to your doctor?

I know that this is kind of contradictory with giving you a bunch of info but don't get too hung up on the tests and what it all means. The layers of complexity just keep expanding as the onion gets peeled. At some point you're going to have to feel that you have a clinician that you have faith in and put it in their hands. That's not to say you shouldn't be an active partner in managing your own health. That's a given.

Hope this helps.