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Hello my beautiful group! Happy March!
I apologize for being out for so long. I went on my vacation at the end of February, and needless to say, it kicked my butt. These last few weeks have been a little slice of hell! I went to the neurologist last week to check-in and there were a couple things she said that have me freaked out.
She's got me in the "Possible MS" category just like a lot of you are. At my appointment, she got a piece of paper and wrote out the different trends for Relapsing Remitting, Relapsing Progressive, and Primary Progressive. She said if I am MS, I'm Primary Progressive, right now, however, I'm lucky enough to be declining at a lower slope than most. I know that we have other people on the boards with PPMS, JIM! I'd love to hear from you. Right now, I'm scared of it.
The second thing she is considering, is that it's not MS at all. I guess that's the other side of the coin--ya got MS or ya don't. There is a RARE disease called "Stiff Person's Syndrome (SPS)" that she thinks I might fit into. This disease only effects 1 in a million. They know much less about it than MS, but believe it is also an auto-immune disease. As far as treatment, there is Baclofen, which I'm already on, and a lifetime supply of Valium. I think that the Valium would be fun for the first few weeks...then you'd be sick of feeling sedated all the time.
I've been really angry about all of this since my appointment. I want to have a say in what disease I have! If there could be multiple problems, or they can't decide between the two, I think the patient should get the deciding vote! That sounds fair!
SPS is detected by EMG and a bloodtest (but, the bloodtest isn't always accurate..kinda like MS with the spinal fluid, some are positive some aren't). I'm getting those tests in April. Does anyone know if the EMG is useful for seeing MS problems?
I'm stressed and I'm tired. I have started walking on my treadmill (started with 6 1/2 minutes LOL!) and lifting little teeny tiny weights to improve the muscles that I do have and keep some muscle mass. I have lost a lot of it with the weight I've lost. My neuro is also going to get me set up with physical therapy so we can try to stretch out and ease up my legs, back, and arms.
I'm also ready to start my application for disability. It's so bizarre to me that they make people fight for the term "disabled." It's something I've had a really hard time with.
Anyway, I'm sorry this is all so crappy! I'd like to welcome all the new members, too! I am so sorry for not being a better leader and being around more to keep the chatter going. I've been working on just trying to feel like a person lately!
Love you guys!
~Dana
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