Living with Polyneuropathy CIDP, GBS, & CMT

IVIGs denied until biopsies

Hi there, first time poster here!

I began having symptoms in October and they continued to progress until the point that I couldn’t walk a few feet without tripping which wound me up in the hospital for a night with no answers. Meanwhile I had been waiting (2.5 months) to see a neuromuscular specialist and was sent home to continue to wait for that appointment (which ironically was scheduled for the day I wound up in the hospital but the doctor got the flu)!

At the long awaited neuromuscular specialist appointment he did an EEG & nerve conduction study. He said that I have almost no nerve conductivity in my legs and wants to start me on IVIG treatments but also wants to do a nerve and muscle biopsy just to confirm.

Of course insurance denied until the results of the biopsies. Still waiting on the biopsies that are scheduled for late next week (1.5 months waiting this time). So again sent home with no treatments or anything! Thankfully I already have a doctor treating me for pain from an unrelated disorder, without her I would have nothing except gabapentin.

Has anyone else gone through this? Are they thinking it could be something else and that’s why they want to do the biopsies? I feel like I’m missing something here…

Anyone have any input?

So funny 5 minutes after posting this I opened a letter stating that my IVIG’S have been approved!

It is for Gammagard Inj 20gm/200.

Yes, I’m going thru the same thing… however 2 years later (on IVIG) I’m doing much better! I’m still without a def diagnosis. I’m able to walk without my braces… some but my ankles are still not responding. I wish you the best… no one has mentioned biopsies for me???

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Maybe you could talk to your doctor about biopsies, it might help to get a definite diagnosis

I guess I’m just very tired of the ups and downs of it all… plus I really do want to continue with my IVIG infusions. The last time I pushed for further answers… I was sent to another medical center for a older doctor to perform “another” EMG & nerve conduction study! I was told I did not have CIDP that I had AMSAN! He took me off the IVIG. 3 -4 months later I took a nose dive! I was seen by yet another neurologist & put back on the infusions. So I’m going to just live with it & trust God.

I wish you the best tho…

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