Cut off further treatment

  • This topic has 8 replies, 6 voices, and was last updated 1 week ago by robm.
Viewing 8 reply threads
  • Author
    • #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.

      Pete Morro

    • #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.

    • #116437

      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.

    • #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

    • #116448

      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.

    • #116459

      Agree with Bryan. Its time for a new doc. Check with the foundation.

    • #117611

      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.

    • #117612

      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!

    • #117614

      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!

Viewing 8 reply threads
  • You must be logged in to reply to this topic.