Hi Stetson!

I was dx'd with SM 1/04 (no ACM). I was being tested for MS (still am) and about the same time, was told I had a serious neck injury.

I have 2 kids - then teenagers. I had been sick for years, chronic migraines, lost my job, horrible fatigue.

When I was dx'd, I felt like I was falling, like I'd been thrown out of an airplane. Took years before I felt like there was solid ground under my feet, and that ground still feels shakey.

I told my neuro two months before my dx I couldn't feel hot/cold in my hands, and that didn't sound right even for ms. I had felt for over 15 yrs like there was some kind of pressure between my shoulder blades in my back, like it needed to crack. Didn't hurt, just pressure.

Like if you have something in your pocket, you just know it's there.

But I was scared when I found out what it was, when I saw it on the MRI film. Creepy.

The worst of it now is, still can't feel hot/cold in my hands - have to be careful I don't burn myself - and I can't lift much or my hands/forearms get tingly (pushing, pulling, straining are out too).

None of my docs understand this condition. Mine, I know, is mild. There's pain, yes, but it could be worse. And I avoid those activities that might make it worse, that's all I can do. If you're allergic to bees, you try not to get stung, and I try not to egg my SM on.


I'm sorry about your dx and hope you find comppasionate, understanding docs to help you out. As far as your family goes, I get that. You are not letting them down or burdening them - you did not choose to have this. Stuff happens, okay? don't be hard on yourself.

This is your chance to show your kids how to deal with the tough times.

All I could think of when it started to hurt was Thank God it's me and not one of the kids.

Good luck.