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MG?me 01-28-2014 09:01 AM

All new to me
 
I finished my 5 day IVIG on Friday and felt pretty good(tired). Sat I was a little tired , Sunday felt great, went to work for few hrs.(first time in 10 days). Monday wham muscles weak, voice gone swallowing problems back etc... Any thoughts??

davew41 01-28-2014 12:25 PM

Quote:

Originally Posted by MG?me (Post 1046855)
I finished my 5 day IVIG on Friday and felt pretty good(tired). Sat I was a little tired , Sunday felt great, went to work for few hrs.(first time in 10 days). Monday wham muscles weak, voice gone swallowing problems back etc... Any thoughts??

IVIG works differently for everyone, I was on it for 14 months total
I got 1 good day out of it where I was able to walk up the steps without the banister.

I did get a few nasty few days long headaches, they tell you to drink plenty of water which I did

On a slow day drink over a gallon of water as it is, on IVIG day I would take a whole gallon with me and also drink about 1 quart before I left for IVIG. it did reduce the headaches..

I have lems I dont know what you have but I am seeing ok results a few hours at a time with the 3,4 DAP and the mestinon together.
it is 99% cheaper then the IVIG ever was less side effects and better results... (FOR ME ANYWAY)

I take the following TOGETHER
20mg 3,4 3,4-Diaminopyridine and 60mg mestinon every 4 hours during waking hours

I do not have MG so the mestinon does nothing for me alone??? we have tried it for 19 days taking just the mestinon and it didn't do anything


with the 3,4-Diaminopyridine it works good and i get about 4 hours before i feel weak again, the heavy chest, talking issues, voice going down and horse, overall arms and leg weakness unable to stand for long..

So now for me it is acceptable i am not ready to make the jump to cellcept just yet..

bny806 01-28-2014 10:11 PM

do you think working was over doing it? It depends on stress, exertion, exposure to illness, and hormones for me.. IVIG really seems to affect everyone differently ..

dave- when you wake up in the am do your muscles work well ? When I"m having a bad exacerbation my eyes won't blink, the rest of my muscles don't seem to work well until i try to blink/move muscles a few times and then everything starts working again..

MG?me- how are you feeling today?

cait24 01-30-2014 04:17 PM

I had a bad experience in my first IVIG. The second one went wonderful. I think it was a combination of it being such a shock to my body, too fast a drip rate the first time, and a bad reaction to the product used. We used a different product the second time and things went much better.

thanks
kathie


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