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My doctor has stopped further treatment. He said “that’s as good as you’re going to get” Does this mean that I’ll stay as I am? Or will I regress to the state I was a year ago when I was falling two or three times a day. When I asked about SCIG he said that it’s only 30 to 40 % effective.
I should have mentioned that I was on IVIG every three weeks for a year before being cut off all treatment, I was hoping I could ease off to six weeks between treatments of gamma. No mention of prednisone, thankful for that.
What city are you having all this treatment done? My belief most docs don’t know how to treat this properly unless they’ve had a lot of experience with this. Being a rare disease it’s likely most don’t have a lot of experience. It is imperative to have a SPECIALIST not jut a neurologist. Apparently, this is a 1 in 100,000 person disorder. So 8 million people in the Chicago area were I am from means approximately 80 people have it. I’m sure there are more than 80 neurologists in Chicago alone. Put that into perspective.
I’m in St Catharines, Ontario. It’s in the Niagara peninsula. Our population is 450,000, so we should have 16 folks with CIPD.
Unfortunately in Canada we have privacy laws, I have no idea who the other 15 are, and no way to find out.
This is a very lonely thing to go through! The docs and nurses are restricted by the privacy rules as well.
We have a GBS/CIDP foundation East of Toronto who hold seminars from time to time, I attended one but didn’t learn much or meet any from Niagara.
Hopefully, when I see the new doc he’ll put me on SCIG
My two cents is to go get a second opinion. I’d be vigilant in the meantime to make sure your symptoms are not returning.
Agree with Bryan. Its time for a new doc. Check with the foundation.
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