Its NOT MSA!

[Lindz]

First of all can anyone tell why evreyone's post headings are vertical?  My view of this board as gone wacko.  Anyway....

Hello, everyone, my last post was January when MSA was on my short list.  I am happy to say that I have been cleared of that!  Other diagnoses have emerged..... My diagnosis - CIDP- be helpful to some of you with full body neuropathy type symptoms.

As far as ANS, my issues are super low blood pressure (85/52) but no orthostatic hypotension.  I have orthostatic intolerance and crazy sleep epidsodes (not breathing, paralysis)  Some nauseau and vertigo when falling asleep.  My MAIN issue are a ton of cranial neuralgias and head pressures.  This began 3 yrs ago with autonomic seizures, then cranial nerve headaches (trigeminal, glossopharyngeal and occipital) and then full body twitching and burning muscle pain and cramps all over, esp. running down my buttocks, hips, saddle region, upper thighs, calves and some weakness feelings. My mouth burns, my throat burns, my eyes burn, tug, pull, I feel like Im teething, my ears have pressure, my face twitches -- just a mess in the head.    

I saw a well known neuropathy dr at NYU who immediately recognized CIDP.   I was thrown a bit, b/c how could the diagnosis have eluded  3 other EMGS and 8 other neurologists......  but I guess it takes time to develop.  He was right on as a nerve biopsy proved it.   So I am on IVIG, in middle of my first round this week. 

I did have a spinal tap the only abnormality being oligoclonal bands (2) in spinal fluid only which show inflammation/autoimmune response in the central nervous system.  Sometimes CIDP can do that, he says, but I feel there is something lurking and that really bothers me to not have a cause..... 

He is convinced though that is it secondary to some other post infectious or rheumatic process.  I do have Epstein barr virus that never leaves my blood (early antigen always there) and show positive Lyme exposure although the evidence of Lyme was very weak in my spinal fluid, it was there but weak.  He still wants to do a one month PICC line of antibiotics.  I have anticardiolipin antibodiies and raynauds and hypermobility and very low serum complements although no rheumy has called it lupus or any other connective tissue disease.  

I was worked up fully also with a PET/CT for cancer.  Negative thank God, except it showed some calcified lymph nodes in a spot suspicious for sarcoidosis.  I did have a polyclonal gammopathy and neuro and lung symptoms 16 yrs ago so who knows if that kicked something off.  He will biopsy the lung node to see if it the smoking gun in all this....  

I feel relieved (VERY) that it is not MSA, but there are so many baddies still out there that get me nervous (like exactly WHAT is in my CNS and is it progreessive?  I feel worse every day)  He says the CIDP can have CNS effects so praying the IVIG will work to modulate my immune system.  

Anyway, thats my update.  I want to thank everyone for keeping me in your prayers.  Im not done yet, so any and all prayers are still welcomed!  Still waiting for paraneoplastic panel (which I came up for in serum as " fluoresence noted" why??? But then on Western Blot NOT confirmed- so we are testing the spinal fluid).   I don't like having half an answer!  So I have CIDP but whats causing it?   I know there are a lot of us in this boat.  Keep pressing.  If you live near NY and want a good dr., I can get you his name.  He is a research dr and clinician so hes very well versed in the entire nervous system.  He was spot on - the only dr in 3 yrs that confidently knew what was wrong the minute I started talking and he moves very fast with diagnosing which alleviates the test waiting game.  Its all literally done in a matter of two to three weeks.   

The only thing I can't square is the seizures, although he suspects since my ANS was malfunctioning that could be the reason.  Also the throat neuralgia I have can sometimes trip the vague nerve into seizures so that could be it too.  I just don't know.  Its just not clean or clear enough for me but he sounded optimistic that he can get me feeling better in six months.    Oh and I do have microhemmorhages on my brain MRI so there still could be some small vessel vasculitis going on here.......

Anyway, for those of you who remember my panic, I thought I would let you know!  (Still panicked but a tad less!) LOL 

L

[Clb75]

I was diagnosed with CIDP four years ago, the developed pots two years ago, possibly from the neuropathy in my feet. Unfortunately it takes awhile for CIDP to get diagnosed because the full symptoms aren't there until it's had some time to brew. I've had a good response to Ivig but it doesn't reverse the nerve damage you already have. Motor symptoms seem to respond better though than sensory stuff. If you haven't been told already, drink lots of water several days before, then during and after the infusion to help cut down on side effects. Also, there's a magazine called IG living, and their website that has great info on Ivig, disorders that it's used with and info on chronic illness in general. Good luck!

[Lindz]

Ugh.  I did not know it does not reverse the nerve damage already there.  This cranial nerve stuff has got to go! Thanks for the link to the IG living website.  L

[Clb75]

Actually I should clarify that I have Axonal nerve damage which can't be reversed, but some damage that is purely myelin may be able to come back. It depends on the person, and how bad the damage is. I was also told that motor symptoms respond much better to Ivig than sensory ones do, so in my case I regained a lot of strength back but my hands and feet are still pretty numb. Hopefully you'll see improvements with Ivig. 

[corina]

Glad to read some good news Lindz! Glad your doctor is s cooperative and to know he's optimistic!