Progresive forms of MS Community Group

I want this to be a forum to discuss openly and honestly about the challenges progresive MS poses. This is NOT a place to down play your severity of synptoms or just MS in general. No more advice that isn't appopriate and no more fear. Monsters live in the dark so lets all shed some light.

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Does this sound like SPMS to you?

lchoppel
lchoppel
From reading posts here, I'm suspicious that I'm not really RRMS as originally diagnosed, but SPMS. I have been dxed for about 2 years now and am going to see my neuro very soon, I thnk I will talk to him about my concerns.

My MS symptoms never go away, I never feel back to "normal". In fact, I keep getting worse and worse, slowley and slowley. I don't have many relapses. I think I've only had one in the 2 years since dx. but my symptoms have progressed. Does that sound like SPMS to you? I know the medical definition, "steady (but not necessarily rapid) progression of disability without any remissions. These folks generally have fewer or no relapses as time goes on." But I don't understand how to apply it to myself. What do you say?
boomer51
boomer51
It does sound like it to me as your symptoms are like mind but I am not a neuro and don't want you to feel more anxiety regarding having MS. Talk to your doctor and be specific about how you feel.
deleted_user
deleted_user
Yes, it sure rings of SPMS but I think unless pushed a neuro isn't going to dx it. If they do they know insurance or Medicare isn't going to pay for a DMD. They know there hasn't been enough studies to show if those medications will or will not work...However, insurance automatically will deny benefits based on????? I am not exactly sure. I only know that is how they think. SPMS or PPMS no monies for us.

So with my neuro, we just keep on keeping on. I know. She knows. My husband knows. We don't need to talk about it. When you go ten years with no improvement ya can be sure what you are facing. I prefer to continue working at it, hoping that the DMD's are slowing my progression but am not a fool. I do know what I have but sure won't approach the subject nor will she (my neuro).....for the reasons above.
deleted_user
deleted_user
I agree with boomer51. Sounds like SPMS 2 me but I am no docter. Talk 2 ur docter like momma says "honesty is the best policy"
I hv medicare that pays for my Rituxian treatment for my SPMS.