Autoimmune diagnosing problem

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..

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.

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.

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.

I've struggled with many multi-system symptoms. I have been given a diagnosis for some (autoimmune: antiphospholipid antibody syndrome- causing a stroke, hypothyroidism, conversion disorder(eyes), depression, anxiety, OCD, arthritis (multiple joints), carpal tunnel syndrome...<br>Others remain a mystery.<br>All of the above, plus all my undiagnosed conditions (urinary incontinence, extreme fatigue, fainting, nausea, vomiting, pins and needles of both hands, sweats...) fall under the umbrella of chronic Lyme, or as the medical community calls it:<br>Post Treatment Lyme Disease Syndrome. (Still true if you were never treated) For me the Lyme disease (and bartonella, babesia ) diagnosis was the connecting thread. Lyme is called the "great imitator".<br>As already said, each of my specialists looked at his or her body part. No one looked at the big picture.<br>The current blood tests for Lyme are generally unreliable, making it difficult to diagnose. Many doctors too, are unfamiliar with the condition. I am not trying to diagnose you as I am not qualified, but perhaps Lyme or another tick borne disease should not be overlooked. May I suggest the ILADS website (sorry I don't know how to add a link here -cognitive -memory problems as well)<br>Good luck I hope you can find some answers.

I've struggled with many multi-system symptoms. I have been given a diagnosis for some (autoimmune: antiphospholipid antibody syndrome- causing a stroke, hypothyroidism, conversion disorder(eyes), depression, anxiety, OCD, arthritis (multiple joints), carpal tunnel syndrome...<br>Others remain a mystery.<br>All of the above, plus all my undiagnosed conditions (urinary incontinence, extreme fatigue, fainting, nausea, vomiting, pins and needles of both hands, sweats...) fall under the umbrella of chronic Lyme, or as the medical community calls it:<br>Post Treatment Lyme Disease Syndrome. (Still true if you were never treated) For me the Lyme disease (and bartonella, babesia ) diagnosis was the connecting thread. Lyme is called the "great imitator".<br>As already said, each of my specialists looked at his or her body part. No one looked at the big picture.<br>The current blood tests for Lyme are generally unreliable, making it difficult to diagnose. Many doctors too, are unfamiliar with the condition. I am not trying to diagnose you as I am not qualified, but perhaps Lyme or another tick borne disease should not be overlooked. May I suggest the ILADS website (sorry I don't know how to add a link here -cognitive -memory problems as well)<br>Good luck I hope you can find some answers.

Oops, just lost my reply. Let me try again...in answer to your questions: I was first diagnosed with Lyme in 1994, then again in 1999 ( with an EM rash this time). I was never adequately treated. My symptoms continued. I was also diagnosed in 1999 with cat scratch fever. (So bartonella) the ID did not treat me for it. In 2001 I had a stroke which led to the diagnoses of APS. Then, it was a progression of multi-system symptoms until now. As I am on Coumadin for the clotting problem, I cannot use antibiotics (though I wouldn't anyway) I am seeing a naturopath and going to a Lyme clinic here in CT. I am also trying ton following an anti imflammatory diet- no dairy, sugar or carbs. As many herbals are blood thinners, I am having to go very slowly. Just this week, I have started bruising a lot and bleeding some. I need to back off on my treatment. In a month of this treatment however, I had little or no pain in my hands and wrists. This is the first time in many, many years. Though it was only lasted 9 days- it IS possible! I am hopeful despite this road block. A friend has improved significantly from her advanced Lyme using alternative medicine. She was first on antibiotics for 2 years with no improvement. I hope this answers your questions. I do know it is impossible to actually prove that all my medical issues are from advanced Lyme (bartonella/ babsia). I had a positive western blot 2 years ago, though my PCP thought it was a false positive. It does explain all of my,conditions though- the diagnosed and undiagnosed. All have been shown to be a result of Lyme. Now a question for you... I am trying to deal with my chronic pain (primarily arthritis) using electrical stimulation, yoga, accupuncture ( really helps), mindfulness/meditation and exercise as tolerated. For my knee -it aggravates the torn meniscus. I am new to these techniques and also going broke. I'm just starting this journey to health. Any other ideas for the chronic pain? Thanks for your interest.

Oops, just lost my reply. Let me try again...in answer to your questions: I was first diagnosed with Lyme in 1994, then again in 1999 ( with an EM rash this time). I was never adequately treated. My symptoms continued. I was also diagnosed in 1999 with cat scratch fever. (So bartonella) the ID did not treat me for it. In 2001 I had a stroke which led to the diagnoses of APS. Then, it was a progression of multi-system symptoms until now. As I am on Coumadin for the clotting problem, I cannot use antibiotics (though I wouldn't anyway) I am seeing a naturopath and going to a Lyme clinic here in CT. I am also trying ton following an anti imflammatory diet- no dairy, sugar or carbs. As many herbals are blood thinners, I am having to go very slowly. Just this week, I have started bruising a lot and bleeding some. I need to back off on my treatment. In a month of this treatment however, I had little or no pain in my hands and wrists. This is the first time in many, many years. Though it was only lasted 9 days- it IS possible! I am hopeful despite this road block. A friend has improved significantly from her advanced Lyme using alternative medicine. She was first on antibiotics for 2 years with no improvement. I hope this answers your questions. I do know it is impossible to actually prove that all my medical issues are from advanced Lyme (bartonella/ babsia). I had a positive western blot 2 years ago, though my PCP thought it was a false positive. It does explain all of my,conditions though- the diagnosed and undiagnosed. All have been shown to be a result of Lyme. Now a question for you... I am trying to deal with my chronic pain (primarily arthritis) using electrical stimulation, yoga, accupuncture ( really helps), mindfulness/meditation and exercise as tolerated. For my knee -it aggravates the torn meniscus. I am new to these techniques and also going broke. I'm just starting this journey to health. Any other ideas for the chronic pain? Thanks for your interest.