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-   -   I could use some advice. (https://www.neurotalk.org/peripheral-neuropathy/216042-advice.html)

H1N1Guy 02-12-2015 12:06 PM

I could use some advice.
 
A few months ago I began seeing a new neurologist who is great. She is very compassionate and thorough. The neuro suspects that due to the sudden jump in progression and the timing of my flu vaccine that I probably have an autoimmuje mediated neuropathy. She wants to repeat my bloodwork from 2010 and do new and expensive bloodwork loke a paraneoplastic panel. She then said from there to get a lumbar puncture. If she can confirm autoimmune she wants to do IVIG. This is all going to be several thousand dollars. Is it worth it? I dont know a lot about IVIG either. Suggestions or advice? Thanks so much!

mrsD 02-12-2015 12:18 PM

We have had a poster here in the past with a vaccine induced PN.
His doctor gave him a course of steroids, to test to see if they caused a remission or lessening of symptoms, which did result.

Why don't you ask to have this done, before doing IVIG?
Steroids also block autoimmune issues. If you take them a short time in high dose like the MSers do or MGers do, then that would tell more than most tests IMO. There is no cure, but it may reveal much in the way of response. If you don't respond to steroids, then I would question if IVIG would work well. IVIG is not without risk.... some risk of heart attack or stroke exists, plus the discomfort with each infusion.

I would get the autoimmune testing done however... just to see what you might have.

H1N1Guy 02-12-2015 01:04 PM

Quote:

Originally Posted by mrsD (Post 1123651)
We have had a poster here in the past with a vaccine induced PN.
His doctor gave him a course of steroids, to test to see if they caused a remission or lessening of symptoms, which did result.

Why don't you ask to have this done, before doing IVIG?
Steroids also block autoimmune issues. If you take them a short time in high dose like the MSers do or MGers do, then that would tell more than most tests IMO. There is no cure, but it may reveal much in the way of response. If you don't respond to steroids, then I would question if IVIG would work well. IVIG is not without risk.... some risk of heart attack or stroke exists, plus the discomfort with each infusion.

I would get the autoimmune testing done however... just to see what you might have.


Thanks for the advice. I want to know whats going on but yet there are no good corrective options. I did suggest the steroids but she wants to wait until we do the tests.

en bloc 02-12-2015 01:37 PM

There is a reason she advised to wait on the steroids until after the testing...as they will skew the results.

It is logical to try the steroids first. They will help if inflammatory based. IVIG is a good option IF all else fails.

Electron 02-12-2015 06:18 PM

Some doctors are reversing autoimmune diseases. Some info:

http://drhyman.com/blog/2013/05/17/t...-part-i/#close
Reversing Autoimmune with john bergman (46 videos)--https://www.youtube.com/playlist?list=PL9kk20gT7X-QEKme2-MxedaO8wMBRR7cX
http://en.wikipedia.org/wiki/The_Chi...mmune_diseases
Google "reversing autoimmune"


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