So I have been diagnosed with small fiber neuropathy and it seems to be "idiopathic"my Doctor is still talking about IVIG because mine is so severe,he might want to first though try me on prednisone, starting dose 80mg then go down from there, I just don't know what to do, I don't want my nerves to be destroyed, so I guess my question is, is IVIG or prednisone somewhat of a cure for this or does it only help symptoms, thanks for all the help. Jan

I was diagnosed with idiopathic small/large fiber sensory neuropathy a little over 3 years ago. My symptoms initially appeared to be length dependent, but over the course of 2-3 months my symptoms became body-wide. I started a supplement regime based on recommendations from these boards approximately 2 years ago and added Elavil at bedtime about a year ago. After developing autonomic neuropathy (POTS) in the spring of this year, my neurologist and I agreed that I should try IVIG. She felt that although my blood work was all negative for autoimmune disease, that my presentation was consistent with that of an autoimmune neuropathy. I am very happy to report that I have seen some definite improvement since starting IVIG. I had some fatigue, headaches, neck pain following the initial 5 daily treatments, but have had no problem tolerating subsequent treatments. I have noticed increased sensation in my hands with a decrease in the overall body-wide numbness that I have experienced. My ability to sense heat and cold in my hands/feet has also improved. I'm also no longer having migraine headaches and my POTS symptoms have significantly lessened. My constipation even appears to be improving. Overall, I am very pleased. My neuro also mentioned that we might consider a trial of Prednisone in a few months, but was concerned as to side effects. I just thought I would share my experience. I was initially very reluctant to try IVIG, but am very glad that I did. Wishing you well. Liz

You sound just like me, may ask you how old you are? I am a little nervous starting IVIG as well, I am 56 years old and suffer from Heart Palps so that Is why I am nervous about the IVIG. I am not even sure my insurance will cover it, so frustrating, also another question how often do you have to have treatments after the initial 5, is this ongoing for life? Thanks for any info. Jan

I'm 52 years old. 6 weeks following the initial 5 treatments I had 2 treatments and then 1 treatment 6 weeks later. I could feel the effects diminishing after 4-5 weeks. I had my last treatment on 11/18 and after a few days my hands went back to feeling near normal. The plan for now is to do 1 treatment every 4 weeks. If you haven't already done so, you might want to discuss your concerns re. your history of palpitations with your neurologist/cardiologist.

I am glad this topic came up. I am waiting to see if my insurance says yes for IVIG. Liz is it always 5 treatments to start off? How long did the infusions take? I have mixed feelings. I am a little scared of the treatments but I am ready to try to get some relief.
hopeful

This is our IVIG thread here:

http://neurotalk.psychcentral.com/thread139835.html

I collected many links and former posts here to help answer questions readers here may have.

From what I've read online a typical IVIG regime is 5 initial treatments followed by single treatments every 4-6 weeks. The infusion itself takes about 2 hours. My neuro, however, requires that I have a urinalysis and blood work to assess renal function with results obtained prior to each infusion. I'm usually at the infusion center for about 4 hours. I know that some people actually do their infusions at home, but my neuro prefers that they be done at the hospital.

I have had IV steroids, and IVIG....IVIG is more tolerable, less side effects. I have also had oral steroid, low dose. My body catches up to a steroid dose very fast, and the benefits have been thus far minimal. That said, they don't know what is causing the neuropathy, despite an ANA of 1:1,280.

I would go for IVIG first, if insurance covers it.

I have a hole in my heart and palpitations several arrhythmias, with severe dysautonomia, and tolerated 3 years of IVIG. My kidneys didn't like it after a few years. I am off now. The headaches were too severe, near the end, usually requiring a trip to the ER, and lasting effects for 2 weeks....altho for years, it was fine!

I am similar in age to both of you.

You know what happens when one has a "hole" in the heart?

Serotonin leaks out of that hole and ends up in higher concentrations than necessary in the body.

Normally serotonin is metabolized away in the lungs. When the hole exists, this does not happen. Patent Foramen Ovale (PFO) has been treated to help with migraines in some patients.
It remains still however in the "experimental" category.

But I seem to recall you could not tolerate SSRI drugs etc. This may be a reason for that intolerance.

Is this what your heart defect is, Cyclelops?

I apologize for hijacking this thread. You are so very lucky to have a doctor who treats a person and not just the paperwork. Predinsone is no walk in the park but if it works it is do-able, I wanted IVIG or predinsone and my doc just want me to take nothing, sit around and be evaluated every 4 months while my legs just wither away. I am sick of docs that only concern themselves with tests and never really evaluate the person sitting in front of them.

I have been given about a dozen diagnoses by my neuromuscular doc. One time it is CIDP next visit she says she never told me that (I take notes) then toxic neuritis and so on. ***She nixed all treatment because my tests were negative*** altho' she says they could convert to postivie somewhere along the line. Within 1 year I went from a foot drop to only able to walk about 10 steps at a time with a walker. I am mostly in a wheel chair. I suspect I have an autoimmune process since I went through 3 years of wildly fluctuation thyroid levels from Grave's disease. My presentation is of autoimmune, flaccid feet and lower legs, weak legs.

I insisted she do something when I saw her last Sept. I could no longer take the pain and it caused me to have problems walking. She gave me a 12 day course of a methylpredisnone dosepack (2 packs used together taper down). In about 2 weeks I was able to move 4 toes on my very flaccid right leg for the first time in months and the muscle contractions were much stronger. I started to get some muscle regeneration on my atrophied lower leg. My severe back pain greatly reduced. BUT....she did not continue the prednisone. Then I had the clot in my left leg, had to rest for 3 week with my leg elevated, and I lost all that I gained. She says she'll talk about it on my next visit which was bumped back to mid Jan.

I feel that my response was almost diagonstic for autoimmune. My internist was, using his words, appalled at my treatment or lack of. They insisted I see another neuro and made the appt for mid Dec. They also got me an appt with a spine center to evaluate the pressure on my spinal cord at t6 t7. All my other docs say I look like GB, but that is a chronic form of CIDP.