Hello,
It has been a little while since I posted, so I thought I would provide an update.
Since my last update, I have started a few meds along with the IVIg therapy that I am taking monthly. I was really having a hard time some months ago and decided that I had to add some other drugs to my regimen to see if it would help me.
Since then the weather has changed to 80+ degree days and I am now taking the following:
IVIg - 80gm/day divided into 2 days per month
Lyrica - 25mg/day
Imipramine - 25 mg one a night, one in the am
Diclofenac - 75mg at night - for inflammation
Lidoderm patches daily
Compound - dexamethasone, lodocaine, and gabapentin - neck

So far this mixture of has helped me enough that I have been able to exercise in the gym, stretch 3-4 times a day and recently ride my bike on paved trails.
So this is great news, only issue has been that I have alot of trouble even walking a mile now. I can bike 14 miles, but not walk very far. Last year was the complete opposite, the more I rode the bike, the further I could walk.
This drives me crazy because all the knowledge of what worked last year seems to need to be tossed aside and need to start again.
I continue to have pain, but I just keep going, I'm tired of just sitting around watching TV. It sucks and I refuse to do it any longer, I do not want to drug myself into oblivion so I can exercise, but without exercise, I feel there is no getting out of this hell that has become my own prison.
I have decided to fight this thing till the end and I am looking into various possible solutions in the future. Nothing I am doing so far is going to make me well. It will only mask the pain and symptoms. IVIg can help, but I am doubtful that it will make me well.
On the other hand, I am seeing great promise in stem cell therapy, but you would need to catch it early and begin treatment to have best chance of reversal.
Hopefully between stem cells and some future nerve regeneration solution we will all have some hope to escape this hellish disease.

N1