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CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Autoimmune Diseases | Last Active: Oct 13 3:46pm | Replies (312)
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@txamo

Hank, I did get infusions of Reclast for four years. I am being treated at UTSW in Dallas. My last bone scan was much improved. I felt that I did not have a choice of not getting some sort of bisphosphonate because I had so many fractures.

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Replies to "Hank, I did get infusions of Reclast for four years. I am being treated at UTSW..."
Hank | @jesfactsmon | Oct 4, 2020

Hi again @txsmo sorry this conversation got side tracked.

In reading a little more about CIDP, it sounds similar to MS only the occurrence is in the peripheral nerves instead of in the brain itself. I know when I was experiencing MS symptoms after being diagnosed I never had any pain associated with it, just reduced motor function, mostly in the legs. So all of your pain might be coming from the neuropathy or at least not the CIDP, do you concur? And the fact that you did get steroids at some point might have helped produce the recovery from your paralysis. The reason I say that is simply from my own experience of having my MS symptoms subside after steroid infusions. Sorry you can't continue with steroids as they might have been able to help you further, or so I suspect.

I find it interesting that you joined Connect in Nov/'18 but only posted for the first time a few days ago. Wondering whether you have been following the forum over that time or just came back to it after a while of not paying any attention to it?

Best, Hank

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