July 9, 2019 at 11:36 am #116434
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.
July 9, 2019 at 12:26 pm #116435
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.
July 9, 2019 at 7:32 pm #116437DavidParticipant
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.
July 9, 2019 at 8:09 pm #116438
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
July 12, 2019 at 12:34 pm #116448BryanFParticipant
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.
July 16, 2019 at 2:18 am #116459cer100Participant
Agree with Bryan. Its time for a new doc. Check with the foundation.
May 17, 2020 at 2:17 pm #117611robmParticipant
Hi Pete, just saw this older post. Hopefully you got your second opinion and progress is being made.
I am from Horseshoe Valley, ON so not far from you. I was getting treatment in Buffalo until I got into Toronto General which has one of the best programs in Canada for CIDP/GBS.
I was on IVIG and am now on SCIG. I am not having the success I would like however my doctor is very knowledgeable so am hoping to make progress soon.
May 17, 2020 at 5:55 pm #117612Jim-LAModerator
Hi Robm, seems we were distant neighbors when I was living in Kitchener and working in Cambridge (before my CIDP). I miss that Beautiful area!
May 22, 2020 at 2:24 pm #117614robmParticipant
Hi Jim, yes not far from me for sure. I am down in that area quite a bit in the summer. Appreciate as well as the posts and time you put into this site. It is very helpful!
July 13, 2020 at 7:14 am #117678MayloParticipant
“This is as good as it gets” sounds like a very lame statement in my opinion.
The damaged nerves need time to heal and if you’re not having new episodes,
IVIG does at least support the healing of the nerves.
I wouldn’t agree to such a statement, if you don’t feel back on track yet.
Whether you’re stay stable or not, is not predictable.
Heard many different cases (like myself), where the next episode followed in many years.
Others are dealing continuously with it.
Don’t let doctors cut you off.
They might have a scheme, but you are the one feeling and living with it.
As long as you feel the need for it, go for it.
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