Neuro offers possibilities...

[Just J]

My husbands mobility has declined for 3 yrs and now uses a cane to walk. Sitting is a problem too and needs to lay down for most of the day. Until now we had no possibilities of a diagnosis. It just felt like a waiting game. Anyway, 2 weeks ago we went to new Neuro at Johns Hopkins. Possibilities are PPMS (Primary Progressive Multiple Sclerosis), HSP (Hereditary Spastic Paraparesis), or PLS. BTW, no family history of HSP but has history of MS but not this form of MS. More tests are forthecoming and additional appointments with Neuro and more brain scans/MRIs. Hope to have more definitive answers in the coming weeks. I don't know that ALS has been completely ruled out at this point but EMGs are clean. None of these three possibilities seem to be life threatening so that makes me feel a whole lot better. I am just unsure of possible treatments at this point...I assume quality of life will still be quite limiting. That's hard to get used too (we are still quite young 40's and 50's). I pray for strength every day. Thanks to everyone for being here and listening. ~Judie

[BethU]

Judie ... I am so glad to hear that there may be good news for you and your husband. What a relief to have a neuro actually pinpoint the conditions he is considering, and to have tests coming up that will probably give you the answer.

It's great that his EMG was clean. It does sound like you are out of the woods as far as ALS is concerned! I'll keep my fingers crossed that you get a dx soon, and that the condition will be treatable.

Hang in there,
BethU

[crystalkk]

Judie,

I'm happy to here you finally had your appointment at Hopkins and hopefully going to have some answers soon. Did they do an emg while he was there?

[lovelily]

Hello Judie...Getting to diagnoses is such a difficult journey for any disease process. My prayers go to your husband and you, as you continue to search for your answers!