Just Diagnosed With The Scary Sps

I'm 48, recently diagnoses with sps and probably have had low grade sps for 20 years based on spasms and back issues. Today my limbs and back are a little stiff, not yet to the point of handicap. I also have some issues with feeling a deep coldness in my hands. I was diagnosed with hypothyroidism several months ago which helped. now I'm trying to find a neuro muscular neurologist who knows how to treat sps victims, no easy task in Mississippi.

My current neurologist laid out some treatment ideas for reducing the GAD antibody, mine is 850, but wasn't comfortable with prescribing one. Has anyone tried plasmapheresis, does it help? What about stretch exercises?

I have had luck when I've reduced stress, I've found that when i do things like distract myself from the SPS thoughts my symptoms are reduced. The day i received my diagnoses my stiffness got worse so I believe this is a stress related problem or that stress has an impact on it. I finally get why they say stress is not good for the body, ok maybe they meant the heart but if the shoe fits.

I have to say I've always known I was a rare bird but this isn't what I meant.
kromagnonman kromagnonman
2 Responses Jan 22, 2013

Im on 50mg of IVIG by IV infusion every week. Supposedly that keeps it from getting worse. Also I am told that people are starting to get stem cell transplants for this. There is a study on it out of a hospital in Seattle but I don't qualify for it due to other health issues. I think the triggers for spasms are light, sound, motion and stress.

i am so sorry you are dealing with this. I agree with whoever said that stress really affects the physical body negatively, it really does. Glad you have medical insurance and people around you that care for you. Somehow we all suffer (many of us deeeply suffer) and we are not alone ... yet we feel alone. Hope you are feeling a bit better right now and are surrounding yourself with people who love and support you. Best wishes, thanks for posting .. keep coming back :)