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

[KEDASO]

My current diagnosis:
C.I.D.P., (Chronic Inflammatory Demylenating Polyneuropathy), with small fiber atrophy, (autonomic neuropathy) and with Horner’s Syndrome; Benign autoimmune thyroid disease.
My major problem:
I have been told by 3 doctors on my team, that I am dieing of this disease.  Or, rather, will be dieing of the complications of this disease, C.I.D.P.
I am currently on a regimen of plasmaphereses monthly for 5 days straight, (I have been getting it for 5 months now).  The neurologist is trying to regulate the treatments.
The pulmonologist told me to expect to be on a ventilator by next year.  I use a Bi-Pap at home when it is hard to breathe, and when a bad flair comes, I must be rushed to the hospital.
My G.P. now has me on Marinol, (the pill form of marijuana, as it is legal for dispensation of marijuana in California for medical purposes).  It does seem to help the severe nausea, though only stimulated my appetite slightly; though I am in the middle of trying to regulate the Marinol increasing to where it will benefit my body the most.
The main reason I am writing this:  the plasmaphereses helps the motor & seral, but not the attack on the autonomic system. It has hit the nerves controlling the heart, diaphragm, bowels, bladder, stomach, now difficulty to swallow and losing my voice at end of day due to poor exs(ins)pirations. Also, my Ophthmal. is watching in one eye, (the one with the Horner's Syndrome), for optic neuropathy. Any suggestions to halt or slow the attck on the autonomic system? Thanks, Kedaso/Oceanside,CA

[CCF-Neuro-M.D.-SH]

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.

[KEDASO]

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:
"MESTINON® prevents the breakdown of acetylcholine (pronounced "a cee til coline") by allowing more acetylcholine to accumulate. Acetylcholine is the chemical that sends nerve impulses to the muscle. With more acetylcholine, there is more control of voluntary functions such as eye movements, limited strength, swallowing and breathing.1,3,4" So, he is trying it out on me, due to the shallow breathing and trouble swallowing, due to the small fiber atrophy, (autonomic attack). My worst flair come from high heat with high humidity. Where I live, it is considered temperate, and rarely have the high heat/high humidity mix. Well, this summer, we had a very unusual season, with MUCH heat & humidity, and had a very bad flair that put me in the hospital. I was put on the Mestinon then, and to tell the truth, I don't know if it was the drug or what, but was able to get through the summer without another very bad flair, (flair-yes, but very bad-no), though September and October are usually our warmest months here, so 1 more month to go...)
Urecholine (bethanechol) for urinary retention. contra-indicted in slow pulse rate and low blood pressure. Side effects, nausea, blurred vision, slow pulse and colic, (This, due to a month-long hospital stay last November. when it hit the bladder. I am able to stay catheter-free, if I use this drug, as well as no retention. Without the drug, I have to go back to a catheter every 12 hours.)
Neurontin, an anticonvulsant for neuropathic pain (not other pains) you are on the maximum dose as in the formulary. (It is being used here for two purposes: 1. Had very bad, what felt like electrical shocks in my spinal cord. I never knew when they would be coming, but would jolt me off the mattress. They first put me on the drug then. 2. Instead of the skin always feeling like a very bad sunburn, the CIDP hit my thigh, from the buttock to the knee, with very intense burning that felt like the muscle were buring, even though I am normally numb there. So, they doubled my dose then.
Flexeril (cyclobenzaprine) is a sedative. (Two years ago, I was experiencing severe muscle spasms, which I started out as a PRN, then became a TID as time went on with increasing spasms. Now the spasms only happen when the Senna starts working on the intestines, but subsides in a few hours afterward, so I now only use the Sennacot when I am bound badly.
Indocid (Indomethacin) a non steroidal anti-inflammatory for joint and connective tissue pain. Notoriously causes bleeding peptic ulcers, nausea.
Zantac (ranitidine) inhibits formation of peptic ulcer. (Okay-the team of Neurologists where mine is, runs what is called, "The Migraine Center for Southern California". They experiment with drugs, to fight against Migraines.
Currently, they are experimenting with non-steroidal anti-inflammatory drugs, such as the Indocin. I have to tell you, if you ever had a migraine, it is so awful. And I was getting 3-6 per month, all stemming from light sensitivity. When I went on the Indocin, it was unbelievable! Now, I rarely get them, maybe 2 to 4 per YEAR. The Zantac was prescribed to ward off the side-effects of the Indocin on the stomach, and the Zantac was later increased to TID, when I was also put on the Mestinon, again for the stomach problems with that drug.
Erythromycin. An antibiotic. Why? Notoriously causes nausea. (Two of my doctors, (the Nephrologist and my Primary Care Physician), knew of this, but others not. When the CIDP hit the stomach, the food got to the stomach, but the stomach no longer functions right, and the food just sits there, thus causing the nausea as well as nill appetite. They started me with Reglan, which dumps the stomach. But it wasn't working well enough. So, they put me on the Erythromycin, as one of the side effects of it, is to dump the stomach. Together with the Reglan, the two drugs are doing that job that my body can no longer do on it's own.)
Marinol. Cannabis.
Regulan a bulking agent laxative
Sennacot a stimulant laxative
Vicodin a codeine pain killer, very, very, constipating
Restoril a hypnotic
Zofran (ondanestron) a strong anti nausea drug may slow pulse and reduce BP
Tigan (trimethobenzamide) for nausea and vomiting.
(I was just put on the Marinol last week. I have been using the Tigan for nausea from the non-working stomach, but for severe nausea I have been using the Zofran, {my helth insurance only allows me 9 pills per month, so I use them sparingly}. He is trying the Marinol on me, to see if it will work on the nausea and nill appetite, and not have to use the Tigan or Zofran as much. I do see it working on my nausea, and just slightly with my appeitite, though my Doc and I are trying to find the right regimen with it, (thank God it's available in California now, passed by vote).
Restoril, I last used a year ago--LOL that is the least problem I have...getting to sleep! When I hit 1300 or 1400 (1 or 2pm), I find sleep mcomes to me too quickly now. The restoril is just there if I have a bad night and need it for sleep.)
IT WOULD BE MOST APPRECIATED IF YOU COULD REVIEW MY LIST OF MEDS, AND TELL ME, IN YOUR OPPINION, WHAT NEW MEDS WOULD HELP ME MOST TO COMBAT THE AUTONOMIC ATTACK.
Please also tell me the side-effects, since my doctor said there were some very bad ones.
As I mentioned, my neuro. siad he was holding out using the chemotherapy drugs for the moment, because of the severe side effects...BUT-the rampage continues on, as each week something seems to keep happening with the autonomic system. ANY SUGGESTIONS?  Thanks again, for this website, and I look forward to your response.  I tried looking through your archives for problems with the autonomic system, and did not find anything. -KEDASO

[KEDASO]

Sorry the first two entries were so long, but I tried to explain as much as possible, the current problems in detail.
-KEDASO

[makina]

HI

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

[KEDASO]

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...
KEDASO

[Demiguise]

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.

[Demiguise]

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.

[Keeby]

Hi Kembaso,

First I would like to say I know how hard it is what you are going through. My thoughts and my prayers are with you. I hope you know that you are not alone.Many people with small fibre have also had autonomic neuropathy.

I don't like the fact that your doctor has given you such a gloomy sentence for the future. No mere mortal knows for sure what the future holds for any of us. there have been people who have recovered from horrific diseases and impossible odds. If this is the kind of support you are getting from this doctor,maybe you need a new doctor!!

I too had suffered autoimmune PN, with autonomic involvement. You are one of the only people I have spoken with who has cardio syptoms (symptoms) and BP go the other way. Everyone is more familiar with syncope & pots.

Did your BP go up because of the autonomic PN? Is it up all the time or just certain times? How high does it go? How do you know for certain that your high BP is related to your neuropathy? Do you have anxiety like feelings? Are you able to exercise at all?

I take Betaloc for Tachycardia and BP. I also changed my diet to more whole foods,and cut out processed foods. I would like to know if you have had any small fibre testing such as sweat test or tilt test?

[makina]

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..!

[KEDASO]

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...
-KEDASO

[Demiguise]

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.

[Ms_Makita]

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.

[Keeby]

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.

[Demiguise]

Welcome to the net! Lets stay focused on your illness. Printer
is down so did some research/thinking/short notes till I get
things running. Guess I was so tired before, didn't really sink
in you told me abt your plasma-exchange. Question: are you
taking any drops in Horners eye? Don't go crazy, but my dog had
Horner's & no one knew how to help since it was so bad. I made
contact w/ a guy in Netherlands & he mentioned an rx-drop. We
had it in US so my local pharmacy ordered it. 1st drop, lid
lifted 1/2 way, 2nd drop lifted open completely. Lasted abt 6hrs
but takes caution since it dilates pupil. Your opthal. probably
has it. Was yrs ago, began w/ P? Ask Dr abt or I can research
again. Another idea for now. Google exact w/ all quotes & +'s.
"CIDP"+"Northwestern"+"NCT00278629" hopefully it will take you
direct. If not, click top 1 of the 3 displayed. It's in Ill. &
they are experimenting/trials & was updated 8/2006. If applies
to you, you can contact them from emails posted. They're doing
stem cell research & they publish/journal testing/drugs/reports/
etc. to other Dr's upon request. Since you can't get to ILL.,
maybe this is a start of something to continue following? I have
actually contacted Univ's regarding studies. Since this is a
gov't funded research, they might assign you to someone who can
guide you through the process & work w/ your Dr.  Worth a shot?

[KEDASO]

Hi all,
I am waiting to see what the doctors here will respond with.
But...
To answer Keeby--
Thank you for your response.  My pulse rate was out of whack...It would go up to 120 to 130, with a low of 100.  The I was put on Atenolol, where it is now 60 or under.  When it does go under, I do not take the pill.  Now, during my last treatment of plasmaphereses, the last two days of it, my pulse ran from 46 to 49.  At home, it is 50-66.  I have been tested for all kinds of heart-related tests, and all were negative.  The high pulse rates were during and before, the problems with the diaphragm.  I cannot get the diaphram to expand, as the nerves controlling it are affected, and the diaphragm will not expand for me, thus the shallow breathing.  Somtimes, I have very fast, shallow breathing when I may be having a flair, sometimes the opposite--very shallow, very slow breathing.
I feel like my torso is a pinball machine, with the ball inside hitting my different organs and making them go haywire...lol...
My pulmonologist was the first doctor to "tell it like it is", and told me I was dieing of the complications of the disease.  But, I like doctors that tell it like it is, as I would rather have the truth said, than an answer of a flowery untruth such as "don't worry about it for now...".  And my G.P. is another one who told me I was dieing from the complications of the disease, and discussed with me my various options when it comes that time, whether I should go the route of hospice, etc.  Again, I was very appreciative that I got the truth, and not some stupid response of, "well you don't have to worry bout anything yet"...
As far as exercise goes, when the CIDP has reached this far, I have to use "Energy Conservation", as told to me by the Physical and Occupational Therapists that come to my house once a week.
I used to use weights and do many exercises, but I cannot do much anymore, as after a short excercise with either therapist, I am totally exhausted and must rest afterwards.  I also get VERY dizzy if I stoop down and stand up.
As far as my diet goes, I have not eaten a meal in, now up to the 27th day.  I am having GREAT difficulty swallowing now, one time all I ate was two teaspoons of potato salad, and I almost choked to death--luckily someone was with me at the time.
So, the doctors prescribed the Reglan, Erythromycin, and Marinol, to beat the nausea and low appetite, emptying the stomach quickly so the food did not sit there and cause the nausea, and the Marinol was staring to give me some munchies.  But, most recently, for about 1 week now, am having that difficulty with the swallowing.
---
And to Demi--
Yes-I know about that study, and I even sent them an email last Friday evening, mentioning that I could be a patient, as I fall under their requirements. however, I have not yet gone through the chemotherapy meds yet, as my nearu is trying to use everything else before he gets to that, due to the severe side effects.  I am indeed very interested in that study!  My doctors have said I should not fly anymore, but I certainly can take a train up to Chicago...lol...
Thanks for mentioning that.
---
Again, I am curious what the doctors here my add.
Kedaso

[CINDY4]

Kedasco,

I am very sorry for what you are going through. I have a 12 year old daughter with a systemic inflammatory autoimmune disease, that has gone in 4 organs (including peripheral nerves) and now her drs believe into her central nervous system causing an autonomic neuropathy on top of the neuropathy in her arms and legs. She also has severe GI problems and has had 2 flares in the past year where her gut totally shut down and would not process anything, even sips of water were thrown up for weeks until the flare settled down. I can empathize with the agony I know you must go through, as I have watched my daughter in such agony that no drugs would touch. ALong this road I have learned many things from trial and error and that most helpful I will share with you.

1. For the nausea, you have to get more Zofran, this is such a life saver. Has you dr really gone to bat for you with the insurance. It has been an effort but we now are allowed the 90 per month her dr wanted so she can get it every 4-6 hours, and even then sometimes it is not enough as she needs it through the night too sometimes. I think with all you have going on, if your dr tried hard enough you should get approval.

2. Are you on disability? IF so are you on Medicaid? If you are on SSdisability and on Medicare, apply for Medicaid as well, it pays for so much more. If not on either you would certainly be approved, I would get it. Now that my daughter is on disability and gets Medicaid they are paying for everything along with private insurance. Medicaid actually pays for all her drugs, yes even the 90 Zofran a month. Her disease is very rare and we have to go out of state, to the wonderful folks that sponsor this site at the CLeveland Clinic every 3 months, and Medicaid pays for most of our travel and covers the drs there, even though we are on Medicaid through Texas.

3. Did they give the high dose steroids enough time to work? My daughter had severe lung disease in the beginning and she did 2500mg over 3 days a month of Solumedrol (huge for a then 8 yr old weighing 50lbs.) She did not improve by leaps and bounds like they thoughtshe would quickly and that is when they started sending us all over the country. We have now gone to 5 major teaching hospitals across the country, and they said maybe it was not enough time on the steroids. We were beginning to doubt, and they took her off the Soulmedrol after 6 months and converted her to daily prednisone at just 10mg daily. She did this for another year, and we were all doubting the lung disease woulf respons, but into the second year of daily steroids she got better, and her lung disease is still in remission although left damage. Blasting you with solumedrol and following it with daily pred for several months, may work if they did not try steroids for over a year.

4. Every where we have gone they all say plasmapheresis is last resort.  All major hospitals have wanted chemo over this so I am not sure why they have not tried it. Plus I don';t know if the cellular procoess is so different between your disease and my daughter (both inflammatory neuropathies), that the plasma exchange is preferrable, but if not, chemo seems to be the way to go. We have been told plasmapheresis is not too effective, but has worked sometimes when nothing else does. My daughter has tried 2 chemo drugs and they failed, but Cleveland does not think her drs at home increased the dose enough, and we will try it again. She had stability during the summer, so we left her just on prednisone until she flared more. Right now her labs are not terrible, but she is having many new symptoms and the drs in Cleveland are talking about going back to a higher dose of a chemo drug. With the issues you are having Cytoxan is usually used for a short time, as it is the most aggressive drug of choice they use in situaitons like yours. Have your drs considered it? If you are still having as mnay issues as you describe on the plasmapheresis, they need to move on. I know dozens who have been on Cytoxan for a while, and it finally blasted these diseases enough to get them knocked out and back under control with steroids alone. I would ask about it.

5. For pain management, the Fentanyl pathches seem to be more effective for pain and not as nauseating, although they also cause bad constipation. Also the last time my daughter had her gut shut down, and she was in the hospital for 3 weeks, they finally did a celiac plexus block, to block the nerves going to her gut, and her pain was 50% improved when she woke up. The dr knew she would see effect as he said as soon as he placed the nerve block her blood pressure immediately dropped. We now can do these every month as nessesary and they are a good alternative to daily narcotics which can cause a host of problems. Are you seeing a pain speicalist? They can make a big difference.

6. A question. My daughter began leaking urine in November last year, it became daily, and was assumed by her neuro that this was part of the autonomic neuropathy. She had a VCUG and urodynamics, she could not complete either test by voiding, she just can not pee during the tests, she gets overly full and then cries it hurts so bad and can not pee. The drs had said if she could not pee the tests would not give them enough infomation to know, but the urologist said just the readings alone without peeing seemed OK, but he did not know what else is going on. He had told me before the test that seeing what happens while she is vioding is the most important past, and his tech told me when she could not pee that they did not have enough info. So I think the dr just does not know. She has recently lost all control of her bladder in public and was humiliated, and again they want these tests done, but I know she can not pee. They did an MRI to look for spinal lesions but it was Ok. She is now having no warning too pee it is immediate, and leaking is worse. How did they diagnose the urine issues with you? Were you are to do the urodynamics study? Thanks!

I truly hope you can find relief. Hold on to hope, it is priceless. Things may look bad, but only God knows what your future holds. I have also been told my daughter can die from this and from the drugs she is taking. I was told by a specialist we saw in Cincinnati, that they had not seen a biopsy like hers on a live person, that usually they see those massive inflammatory changes at autopsy. It is scary, but God knows the plan He has for your life, and no matter what the drs say if it is not your time to go, your not going. Like wise, if it is your time,nothing will change that either. I have realized God knows how each of us are going and nothing will stop that, or change it. No disease, or accident, or anything will change His plan. That has made me be able to let go of the fear of the unknown, and worry for what her future holds. It really is not in my hands or the drs hands anyway.  Take care!!

Cindy

[Keeby]

I appreciate the fact that your doctors are trying to be honest. But it also sounds as if they honestly have had alot of trouble figuring all this out too. My neuropathy last year was 5 times as bad,and I was in bed most of the time. I was very ill. This year I have recovered quite a bit.

But I am sure I was probably written off as beyond help by a doctor or two at some stage. As Cindy has posted and I agrre with her that you must not let go of your hope. You need to beleive that you will get better.

She is right in saying there is a plan for all of us.

best of luck

[Demiguise]

I hope this was a freebie post! Seems odd that you haven't been
contacted by Dr yet. Anyway, I have a long term friend that I
emailed abt you. He had gone through multiple symptoms for yrs
many yrs ago. Hospitalized over in Europe when he collapsed &
was finally dx'd w/ GBS. He's had attacks/hospitalized many
times but goes into remission. Problem was, dx's had to be done
by knowledge & event. US is better now w/ GBS but he was told
in `96 it was poss. CIDP. His paralysis was the tip it was GBS.
He wrote back w/ some info that might help. He knows someone
w/ CIDP. Google "cyclophosphamide"+CIDP & the first url will
take you to a group offering lots of info. Don't drop quotes or
the +, & + it will also turn up many url's to read. I was told
that the cyclo w/ immune globulin & no prednisone wk'd for that
person w/ many pretty quick resolutions to things. I guess the
protocal study was developed by Dr Andrew Kornberg, US or UK &
may be worth researching if anymore studies have been published.
My friend went through some terrifying times/attacks/coma w/
GBS till dx'd. I figued any info is worth sharing. 1 more thing.
The CSF plays a big part of the fibers. He mentioned Diamox the
diuretic. We make/replace CSF 3xday. This is the only one that
wks as a anhydrase-inhibitor. It's used by mountain climbers
before they go out to slow process so pressure doesn't build on
fibers that transfer altitude head pressure. I know this rx
affects Ach but not sure if it applies. Evedently it lessens
GBS responses. Hope you're doing best as can be expected. You
sound like a fighter. Try the google above. If you paid for
post, maybe click on Contact above to alert. If free, 5-10 days
is what they say but I've never seen this slow response before.
Gd-luck.

[Keeby]

Hi Kedaso,

I just wanted to know if you actually had high BP as a result of autonomic PN? And if the doctors were able to tell you that was the reason? Do you have panic/anxiety? Are your BP meds working to help with the BP?