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Brie (@brie87144)

Autoimmune diagnosing problem

Autoimmune Diseases | Last Active: Dec 4, 2018 | Replies (211)

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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..

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Replies to "Hi, I am new to Mayo Connect. Tonight I had an honest chat with my chiropractor..."

Sorry to hear of your travails. You’ve had to endure a lot.
So how was the adrenal insufficiency diagnosed? There are several ways to test for it so did you get the full suite including ACTH? Was it diagnosed as primary, as in Addison’s, or secondary? Why hasn’t it been treated since that could make a massive difference?
Likewise with a firm SLE diagnosis. If it was diagnosed, and the tests that drove the diagnosis can be replicated, any worthwhile clinician would treat it. Not treating it is taking a big chance. Yes, the meds are scary, but the prognosis of the illness progressing unchecked is scarier.
My 2 cents is that your primary physician with all of these reported issues should not be a chiropractor, it should be an experienced rheumatologist for starters. If the chiropractor gives you some relief, fine, but as far as med consults, not so much.
Are your diagnoses right? Can’t answer that here but if you have concrete test results that conform to guidelines to diagnose a particular condition you can probably assume that they are. Sounds like you need to do a reset and bring all of this to a highly reputable rheumatologist to review your records and do the needful. I say rheumatologist because of your remarks about SLE which kind of trumps the rest. The TPO is a little high but could be much higher. An endocrine panel is probably a good idea too since autoimmune thyroid disease and other autoimmune disorders are in many cases joined at the hip.
Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference.
Hope this helps.

Hi @johnwburns, thank you for your thoughts and the test link. Prednisone 5mg is one of my 20 meds. I got diagnosed with adrenal insufficiency only based on cortisol level in the morning-level of less than 1 both times. I was suspect for Secondary or Tertiary Adrenal Insufficiency. I was also tested for Graves disease- TSH, Thyroglobulin,
TPO, etc.

How would they treat adrenal insufficiency? I was told to take 2-3x my current Prednisone if I get flu, stomach bug etc and adrenal prep before surgery. But no ACTH test, which I wish they would do-they expect I have had so much steroid over historic treatment that is the cause…80 mg solumedrol with my benlysta infusions over the years….over last year 6 or so injections in my spine.

They used c3/c4 complement as basis to take me off all immune suppressants except plaquenil. They consider my lupus inactive.

But my joints are not happy, I have fatigue, i have some areas on my head that are truly thinning (I had a chunk come out behind my ear). I asked for celebrex and that helped hugely.

I stopped infusions back in October because my doctor went out of network and my infusions would be over $1,000. All organs were checked and look good. My lungs are consistent with restrictive disease but otherwise are normal.

CRP was normal back in Feb so again, indicators looked okay.

So my prednisone and plaquenil and nifedipine for Raynauds are used to manage Lupus….and vitamin D2.

This is so hard as my prior rheum treated me with infusions for 5 years and I went to teaching hospital and meds were unwound, and yet I still have 20 meds. Made me wonder what did I let happen to me over last 5 years at pther rheum.

My chiro is not my primary care, but truly concerned that I keep on deteriorating.

4 falls in month of July is bad. Fracturing sacrum, having herniated disc. Having significant numbness/neuropathy in my feet. And leg weakness. Eye blurriness, orbital swelling and slight eye bulge. Obstructive and central sleep apnea. These are very recent additional diagnoses. My list of diagnoses grows.

Going to see neurologist next week for EMG…he thought I may have lupus CNS, but also noted significant weakness, nystagmus of my eyes, etc…

Maybe he can put some lieces together.

I moved my care back in February to a teaching hospital as my autoimmune GI issues cam unded cpntrol and I hoped other specialties could help.

Somethings have gotten better, but even with rest, I am still at a loss. i am encouraged to exercise but my balance is bad and I am accident prone. Right now I am not even okay for pool exercise. i see a Physical Therapist next week for assessment.

I have filed for disability but the process is so slow. I am running through my retirement while waiting.

I need to get better fast so I can work again. I worked so hard to finally have a house. I could end up losing everything come this fall if I am not physically functional.

Bottom line, my chiro is encouraging me to pursue more expertise to get me showing signs of improvement instead of worsening that he sees week by week.

Thank you for writing.

Just curious but are there multiple prescribers for these 20 meds? If yes there is a pretty good chance that you have some collisions going on, or will.
Diagnosing adrenal insufficiency based on a couple of morning cortisol tests doesn’t sound right, however low. Does your blood pressure run very low. Do you faint? Hard to know whether 5 mg of prednisone is an adequate dose since the diagnosis isn’t clear. Even 5 mg of prednisone is not innocuous. Could mess with bone density, blood sugar, mood. I don’t know what the threshold is for shutting off your own adrenal function but its something that should be monitored.
Here’s a link re adrenal issues:
I’ll stick to what I said earlier, do a reset on the conditions and meds. Too much going on to try and parse it out point by point. If the neurologist is at a center of excellence maybe you can use him to link to other high quality providers so you get all of your care under one roof. At this point the meds may have become half your problem but arbitrarily cutting them off is not a good idea.

Get a medic alert setup for the falls.

Hang in there.

John, thank you so much. I do run low with blood pressure, but I also take calcium channel blockers and beta blockers (Raynauds and migraine prevention respectively). One doc owned most historically, but now pain meds under Primary care, Rheum meds under Rheum, Gastro, Kidney under respective providers. So i keep a list broken down by owner and what each med is used for…I dont like this.

Rheum used to be quarterback…but he checked out, then went out of network and I was left hetting worse. He told me he didnt do well with pain. So I moved. When I called to say I was moving care, ther was no response, so I took it that was what they wanted.

I actually had a diagnosis of dysautonomia in 2005. I had POTS, went thru tilt table test, etc.

I do get faint. BP about 100/60, but has been as low as 89/60. After discectomy and fusion in my neck, it wast 50/30…

My A1C is 5.1-no sign of diabetes.

I am wondering if I have some other disorder altogether. I have muscle fatigue that is unbelievable. I cant handle 2 steps into my house. I have to pull myself in ising the door. If I dont take that prednisone on time I get the shakes and feel faint.

Who knpws what the right amount is. Who knpws if myvadrenals were bad before all my meds-no one ever checked…

I have been thinking going tp Mayo or Johns Hopkins.

I am hoping neurologist may help. He sees how week I am…he doesn’t try to ignore

Gotta give a chance…

Thank you lots for thoughts..

No problem, we try to help. Priority 1 for you is making a caregiver, friend or relative aware that you fall, and fall often. That is your biggest immediate danger. Second, get those meds reviewed and get them managed by one clinic or group. You are taking drugs that lower your BP and are complaining of fatigue, a known side effect. Don’t stop them without supervision by any means. Read the link I sent you about adrenal insufficiency. You may have had Addison’s disease before all of this started it is likely that it would have landed you in the emergency room long before now. My 2 cents again. But that is for evaluation by an endocrinologist and it is easily done.
With POTS any meds that effect BP must be managed by a specialist. Make the neurologist aware of this, and your falling as well.
You may not have many problems, you may only have a couple that have not been managed. Lupus is a monster. It is known as “the great imposter” and can make things look like multiple separate illnesses. I’m not saying that’s what’s going on here, just an fyi.
You said this above: “i have some areas on my head that are truly thinning (I had a chunk come out behind my ear)”. What does this mean, that a piece of your skull came out? I certainly hope not and if you have been injured, its a 911 issue and not one for a blog.
Put together a simple plan based on simplifying what seems like an impossibly complicated situation with the help of your doctors and other caregivers. Get enough rest.

Hope this helps.

I appreciate all this feedback lots…and I was talking about hair thinning, but somehow missed being clear-my skull is okay.

I just had a friend tell me “put me first’ as emergency contact and send doctor list, meds, wishes…finding a true emergency contact is hard-this friend made it easy..

Yes, I will talk to neurologist about all the falls, etc.

I have a walker because of all the falls-I got it earlier this week.

I am going to read that link you sent on adrenal insufficiency- some of my earlier ER events may have benefited from knowing insufficiency was an issue.I truly feel if I had been tested long ago, this would have been identified.

I have medalert I keep my cell with me always and car has onstar. i have security system with quck paramedic alert. My falls all seem to have had a syncope feel so I will follow-up.

Thank you so much for solid, organized guidance.

Well that’s great! Thought so about the hair but had to ask.
Good that the friend stepped up. Hang on to that one.
Remember to ask the neuro about connecting the rest of your care to a single clinic, or 2 at most if possible. Easier to pare down the meds, if possible.
One tipoff re primary adrenal insufficiency is hyper-pigmentation in some areas, hands and elbows I think. You’ll see a note about it.

Glad I could help. Good luck and keep us updated.

Please go to Mayo. I cannot say enough about their diagnostic procedures. Mayo’s has a team approach so all your concerns and problems would be addressed.

@dogmamat here is the contact information for all 3 campuses of Mayo Clinic http://mayocl.in/1mtmR63. You can inquire about consultation and they will work with your current care providers.

Like @johnwburns, it’s good to know that you have such a friend and that you safety measures in place like the medicalert bracelet, your cell and onstar.

I am having a day. I have been feeling under and weak. I feel like my new
rheumatologist don’t grasp what it means to live with low cortisol. I also
am having a hard time because they are saying the lupus is not
active…then I go to Neurologist who feels preliminarily that my
neuropathy is secondary to my lupus rheumatological state and prednisone…

I can’t rationalize working with them when I have been experiencing falls
from weakness, lack of proper feeling in my feet and, it almost feels like
syncope is a factor too. I feel like I need a medical referee. I am tired
of having to hold doctors feet to the fire and am at the point of not
trusting rheumatology as a discipline. It seems terribly subjective and
lacking good diagnostics.

I am ready to shift care after 7 months. The trend of compartmentalization
of care is dangerous..I have scripts from 6+ doctors and no one is watching
how they all interact even with most docs being in 1 institution!

I want to work, but honestly, it was bad enough using a cane. Can you
imagine me showing up with a walker for an interview? And I hear from one
company, wanting a 6am interview (I never heard my alarm and just heard my
vibrating silenced phone (interviewer). I was told when I am ready to do
50% travel they would be happy to try to hire me…

I feel the deck is stacked against me. Expensive medical care that doesn’t
leave me functional to work in my profession of 9 years…

Just feeling lost…

I’m kind of reading between the lines but its seems like you blame most of your feelings of illness/incapacity on low cortisol. That is easy snout to quantify with a set of tests that I think that I’ve already shared. But, you are on prednisone so that will skew any testing. If you are on prednisone, your low cortisol is being treated so do you think that it is not being treated adequately? This is kind of an important thing because if you are being over treated with prednisone your own adrenals will shut off, permanently possibly. It varies by individual.

Right, remove the compartmentalization so the rheumatologist and neurologist are under the same tent and share information directly. I don’t know who else you see but these seem to be the primary areas you bring up as concerns. I didn’t get a proper diagnosis and treatment for Sjogren’s until I saw a lead rheumatologist and neurologist at Mayo. I had a plan within a month.

Your Lupus may or may not be in remission, quiesced. Here is a brief definition of the term.
Maybe ‘controlled’ is a better term.

So, getting thee meds evaluated and getting ket treatment collected under one treatment center seem to remain to be objectives that might improve your situation.

A chat with a social worker might not be a bad idea, regarding disability and your entire situation.

Hope this helps.

Thank you John, I hadn’t heard of quiesced. My joints are still a problem, but it is osteoarthritis, which seems not to matter. Celebrex had been helping, but right now my joints are aggravated. With falls, i have seen my CRP go up, but RA seems higher priority. i wish they would put me back on benlysta and taper me. Instead Rheum’s first words were no taking away the prednisone for you.

The neurologist I saw yesterday said the fact that my cortisol was so low may be key to my state right now…

I have a disability attorney. SSA is now reviewing all the dpctor’s notes. Tbe problem is the financial support is so lowvand I dont have 2 years worth of savings to pay for health insurance until subsidized healthcare is affordable. It is tougb. One of the scariest things is watching your savings just drain away.

I appreciate all the feedback here. It is always thoughtful and helpful.