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Autonomic attack (small fiber atrophy) with CIDP-any suggestions?

My current diagnosis:
C.I.D.P., (Chronic Inflammatory Demylenating Polyneuropathy), with small fiber atrophy, (autonomic neuropathy) and with Horner
19 Responses
Avatar universal
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   Autonomic neuropathy is often hard to combat and is generally approached in a symptomatic fashion (we have no cure or way to reverse the damage).  Autonomic symptoms include orthostatic hypotension (pass out/get light headed with standing) and can be treated with midodrine to raise the blood pressure and mestinon to increase autonomic tone.  Autonomic dysfunction also leads to gastric immobility and this is often helped with small frequent meals and medications such as reglan. Some people eventually require a stomach tube if swallowing difficulty continues.  Bladder emptying can also be affected by autonomic problems and may require a implanted stimulator, or superpubic cath if severe.  I would recommend you get urodynamic studies and a urology consult for this question.  The symptoms you describe are more severe than I would suspect for CIDP with small fiber neuropathy, I would suggest a repeat EMG and consulation with a neuromuscular specialist to help make certain your diagnosis is correct.
I hope this has been helpful.
Avatar universal
Note: Here are my meds now, and as the attack on the autonomic system progresses through my body, more meds keep getting added on.  Below, was a response to a doctor on a different site, re-my medications I have so far.  He had remarked on each med I was on, and I sent back a resonse to him:
Okay-I saw my neurologist yesterday. He does see the plasmaphereses helping the motor nerves, in that roller coaster ride of climbing up to the high point 2 to 3 weeks after the plasmapherese last dose, then come down to the way it was the last week before the next treatment. So, he is going to continue this routine, of 3 days/1day off/2 days. And continue monthly. He told me that even though there is the roller coaster ride of the high where I can walk with a "limp type of short walk, (still no long distance), down to walking with the walker and/or in the wheelchair, that each time it is given, I might be getting a "smidgin" better each time. I guess I will have to wait and see.
But, as far as it hitting the autonomic system, he said no treatment for this esists yet. However, he said he has been hearing of some good responsives with a drug, (he said the name and called it in to my Pharmacist, and I didn't write it down what the name was as I was going to see the name once I was supposed to pick it up from the Pharmacy), that is used my patients after a kidney transplant. So, he prescribed it for me, however, it bounced back from the pharmacy, because they said it was a certain class of drug, and must be approved by my health insurance. The problem there, my pharmacist told me, was that if this is considered experimental for my disease, of which it has, then my health insurance will probably decline it...I have been wiped out by the non-insurance-covered co-pays for all the treatments and Dx trail, that if they won't cover it, neither can I. But, my doctor, who has over 20 CIDP patients, my case being the worse, thinks it my put a kink in the progression of the CIDP through the autonomic system.
As to my drugs, I know exactly what each is for, and will tell you why each was prescribed--on one of them, it is being used experimentally, with very good success:
"Now to your drugs.
Atenolol lowers BP and reduces heart rate. (Last year, the CIDP hit the nerves controlling my heart. Very often, the pulse rate was between 120-130, with a low of 100. This drug brought it down.)
Mestinon. Why? This is for myasthenia gravis, it should be used with extreme caution in respiratory distress. Side effects include nausea, constipation or involuntary defaecation, slowing of pulse, muscle weakness, paralysis. (He is trying this out on me. He has two myasthenia gravis patients, and knows this drug well. He says it sends nerve impulses to the muscle. Below, is copied from Mestinon's website, as to exactly what the drug does:
Avatar universal
Sorry the first two entries were so long, but I tried to explain as much as possible, the current problems in detail.
Avatar universal

I am so sorry for what you are going through.  i hope the docs here can answer your questions..

can i ask you what type of test was done to determine small fiber atrophy and cipd?

Keep us updated...i will pray for you

Avatar universal
A skin biopsy, which the confirmed result was small fiber atrophy.
For the final diagnosis, which took 3 years of hell, while the doctors performed the myriad of tests, (which included: EEG; EMG; Evoked Potentials; nerve biopsy, many MRI's including one of the new MRI's of nerves, and CAT scans; many blood tests; many tests I can't remember their names, but were neuro tests, 2 hospital stays including one that was 1 month long; 5 trips to the ER by ambulance because of bad symptoms associated to CIDP, but not yet having the final Dx; and a trail of neurologists that in this case I started with one-he transferred me to another within his team at his office, who later sent me to a more senior neurologist at a University hospital, who then sent me to one of the 3 top neurologists in San Diego county of whom was the actual teacher of my current neuromuscular neurologist, one who only deals with rare diseases and I had to be accepted by him whether or not I had a case worthy of him reviewing the case.  He gave me my final diagnosis in Janury 2006, after they whittled down throught the 3 years, of what I did NOT have...
Once he confirmed my diagnosis and why, my main neurologist then agreed that is what is was...
Avatar universal
See how tired I am! Meant to post CIDP. It's called sleepy
typing! I'm not a Dr but physiology plays a big part of this.
Looks like forum is getting backed up? Maybe over-wk'd. Later.
Avatar universal
I dont understanad what u mean by "makina has sinus/allergies and cant understand your suffering"

I see a neuromuscular especialist for my problems.  i wouldnt see him for sinus roblems.  i have sleepless night from my pain.  i do have sinus problems but i also suffer from neurologocal sysmptoms.

i might not no cipd but can offer nice words..!
Avatar universal
Yes, I have gone through the usual regimen for CIDP.
-High steroids, (solu-medrol and high dose prednisone), of which it  did not work .
-IVIg for 4 months, to no avail.
-Am going to get my 5th dose of plasmaphereses, (3days, then one day off, then 2 more days), of which the neuro. has been trying to regulate, so see how much/how often...
As mentioned, it is working for the motor & seral, but not at all for the attack on the autonomic nerves...
Avatar universal
It's always best to try to know the severity of an illness
before posting no help. You could not relate. You have several
problems & appear to be in denial. On this same forum (9/12) to
Dr, you listed you grew up w/ allergies & respiratory problems.
On Undx'd Symptoms forum (9/27), post says allergies are 'really
bad' now. You have more than allergies wrong w/ you. Leave the  thread to focus on Kedaso. This illness is very serious & if
researched 1st, you would've known an emg was in the tests. I
posted to you awhile back for some help. Now lets wait & see
what this Dr has to say. My apologies.

148354 tn?1211237506
How can you judge someone else pain and what they are going through? makina is on here for same reasons we all are,we are all suffering,in pain,and want help,or just need some support. I know your going through hard time too,I'm really sorry for that..I'm sorry for everyone that is suffering on here..but show some compassion..we all need support right now,not rude remarks.
Avatar universal
Hi Kedaso,

did you manage to view my post to you? It's just that you replied to someone else,but not to my one with the questions I asked you.
Avatar universal
I'm going to make this short as I just briefly scanned all you
wrote but it's very late & need some sleep. I'll print-out &
review. Not that familiar w/ CIPD but know quite a bit of
physiology & can help you research. Makina has sinus/allergies
& no idea of the suffering you have gone through w/ past/present
& I'll try to help off/on. I'm familiar w/ the Calif. Univ.'s &
you're lucky to be in that state. I have a few problems of my own but nothing like yours. I'll try to think abt this, & mean-
time, try to stay positive. You need those good chemicals to
help control things. Before closing, I'm sure answer is yes,
but have they tried IVIg plasma exchange w/ the prednisone dosing for your inflammation? Prevent complement-binding & as
you probably know, it slows fiber atrophy. I'll get back to you
soon. I read somewhere that there is a gov't trial program
going on (if not familiar). I need some rest & we'll see what
we can come up with. I had relatives in Oceanside. Miss Calif.
& driving PCH! Talk later.
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