Today I saw my Neuro

[Sunshine 2]

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".

[Ikoiko]

Good luck on your decision!

[agate]

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:

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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.

[Sunshine 2]

Hi agate-- the plasmapheresis would target the SPS .

[agate]

You're thinking it over, right, Sunshine? That does seem like a big time commitment. Is it a long way to travel?

[Virginia]

I am wondering that while it would mainly be given for the SPS could it also hit the MS, assuming some of your problems are stemming from that. What a commitment. So glad your husband is retired and can transport you to wherever you need to go Sunshine.

[Sunshine 2]

Yes,agate, it could also treat the MS, not just the SPS.

I am still on the fence.So many drawbacks. And no guarantee that it would work. In the meantime, my immunologist is researching whether it's safe . A third diagnosis is Common Variable Immune deficiency (CVID). There is concern that I might not be able to fight infection when I am on the plasmapheresis

[agate]

That concern about vulnerability to infection sounds like a very big concern.

I don't understand how a person with an autoimmune disease is supposed to figure out whether there is increased or decreased susceptibility to infection just on account of the disease itself, which is altering the immune system though apparently just how the immune system is being altered isn't clear. Then you add on a procedure like plasmapheresis that is going to do more altering of the immune system, and just what it will do to the immune system isn't clear.

Maybe that's not really the way it is, but if it is, it sounds like a really risky procedure. However, sometimes a person has to take big risks.