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Jul 27, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

So stepping through
•B6 deficiciency was found by colleague in practice with my Primary care. I
was having nerve pain every where-pins and needles, burning, bad leg pain,
back pain, plus my falls. That is when I was prescribed the walker,
lidocaine pain patches, and she ran blood work on my B vitamins. Only B6
was low-15 nanomoles and 20 is lower bound. I mentioned that to Neurologist
and he cautioned watch out as you can get neuro symptoms from too much too.
The PCP prescribed 100 Mg/day.

•With both Calcium channel blocker and Beta blocker and Lasix, along with
Prednisone, my heart is getting conflicting signals. Calcium blocked should
trump all, addressing my bad Raynauds. Beta for headache prevention. Lasix
for foot/ankle edema and prednisone for inflammation and now my adrenals
too. Generally my BP stays low, like 100/60. Bit if I am in bad pain or
with infection, it shoots up.
The combination of all has to be impacting my balance, and maybe that’s why
it isn’t explored more-but something has changed where I have now become
imbalanced.

•yes, I have to get down to 1 owner of my meds…and less (but the right
ones)

•Dysautonomia was diagnosed by a pain management doc in 2005. He ordered a
tilt table study. My BP change was 30. When the change happened it felt
like I had a huge volume pf knives stabbing my body. The pain doc shared
his daughter had the illness so he knew the illness. So he told me get all
the books I could, wear compression host and take salt tablets. Then he
dismissed me as a patient…not anything else he could do. So there I
was-no plan, told with exercise and good diet, literature said I would have
7 years to live. Later docs were skeptically/ignored.

•the irony I saw was that mineralocorticoids help in balancing out the
endocrine issues when there is ACTH depletion and ACTH helps in signaling
adrenals to produce cortisol. To me it seems ironic and maybe that old
diagnosis needs revisiting. I told my PCP and she didn’t want to explore
because a positive result could happen just with meds I am on…but doesn’t
that say we need meds reviewed, period? I am going to raise this with
Neurologist…

Thanks for talking through this, I appreciate.

Jul 27, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

Thank you for your support. My endocrinologist is passive, saying let me know if your rheum wants to do the taper.

I think we need to see the outcome of the neurologist’s evaluation. I have more comfort with him. i told him about my B6 deficit as well and he warned neurological symptoms can get worse with too much B6.

The volume of pills is daunting. And who knows if side effects are adding to our challenges. For me, the passiveness to keep everything status quo is hard when you dont feel well. Sometimes I feel like we just have to tolerate our as is state because the docs feel it is the best that they can do.

For me, addressing falling is an issue. We are addressing with a walker, but why do I fall. Last night I stood up and next thing I know I am trying to land back in the chair…no dizziness.

I guess we just need to keep asking questions. Next week I will be evaluated by a physical therapist. Between him and the neurologist, maybe we can find an answer.

Thanks much.

Jul 27, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

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.

Jul 26, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

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…

Jul 25, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

Thanks much. I grew up in Lyme country and once in a while I think abput this.

It is also ironic that I am on anti malarial, given I spent 6 summers getting bit by mosquitos in the subarctic.

This weekend I learned I am B6 deficient, which is an indication of inflammation and can cause bot muscle and nerve pain. I started on B6 today and hope it helps. All my joints are worse tthan usual, as well as my neuropathy.

I send best wishes on your diagnosis journey. It seems sometimes that only alternative health providers look at people more holistically.

Kind regards

Jul 21, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

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.

Jul 21, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

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..

Jul 21, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

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.