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Today I saw my Neuro

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    Today I saw my Neuro

    Today I saw my Neurologist. I see him quarterly.

    Today we spoke about the possibility of trying plasmapheresis . Has anyone here tried it for their MS?

    It's a real commitment of time. The first week you go every day -- 4 hours each day. Then twice a week for a few weeks, then every other week. You can see why I am on the fence . Likely I would have to have a port . Already my veins are blown out from IVIG every month for the past 5 years.

    The other issue was that I had thought I only have Stiff Person Syndrome. But, my Neuro said I also have "Probable Multiple Sclerosis".

    #2
    Good luck on your decision!

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      #3
      No experience with plasmapheresis and I can't think of anyone I know of who has had it but I know it's been used for MS. It's been less used in recent years though. I'm not sure why its popularity has fallen off. I did find this but it's from 12 years ago:

      Only registered and activated users can see links., Click Here To Register...

      I hope that whatever decision you make turns out to be beneficial. A person is always tempted to do something rather than just letting things take their course but sometimes doing something turns out to create more problems than it solves. I'm afraid that's true of a lot of treatments for neurological disorders.

      Did the neuro recommend plasmapheresis for you? Would it be targeting the MS or the SPS, or both?

      Unfortunately a person can have more than one neurological disorder at a time. I recall at least one person on here who had both myasthenia gravis and MS. So sorry if you're another person who's been hit with a double whammy, Sunshine.


      Last edited by agate; 11-17-2022, 06:02 PM.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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        #4
        Hi agate-- the plasmapheresis would target the SPS .
        Last edited by Sunshine 2; Yesterday, 03:17 PM. Reason: edited for accuracy

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          #5
          You're thinking it over, right, Sunshine? That does seem like a big time commitment. Is it a long way to travel?
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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