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Just J

Distinguished member
Joined
Oct 30, 2007
Messages
300
Reason
DX UMND/PLS
Diagnosis
01/2010
Country
US
State
MD
City
Havre de Grace
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

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
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 diagnosed soon, and that the condition will be treatable.

Hang in there,
BethU
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
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

Distinguished member
Joined
Nov 27, 2007
Messages
390
Country
US
State
NJ
City
Northern
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!
 
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