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
Hello everyone. I was wondering if you all would help me out by providing some general information. I am looking for data on the progression of PLS. Understanding it is different for everyone. If you could please provide a synopsis from symptoms onset to current I would really appreciate it. If you were first diagnosed with PLS and later diagnosed with ALS I’d like to hear from you too.
For my husband progression has been:
2000 – numbness in feet and feet spasticity (only at night time)
2005 – balance issues began
2006 – began seeking medical treatment for balance issue. Resulted in 2 cervical fusions (later found unrelated to symptoms)
2007 – balance issues continue to get worse (neurologist does not mention PLS or anything else)
Aug 07 – my very active husband has to give up golfing, which he did about 3x week.
‘07-‘08 – a number of MRIs are done, blood test, lyme disease test, lumbar puncture etc are performed still with no diagnosed.
Aug 08 – begins using cane for balance, can barely walk 40 feet without rest, can stand 5 minutes tops
Sep 08 – First visit with Johns Hopkins. MS and HSP are ruled out, first time advised “probable PLS”.
Sep 08 – Began taking Baclofen (80mg/day)
Oct 08 – begins using wheelchair when walking requires more than 2 – 3 minutes
Oct 09 – begins using walker, can no longer drive
Jan 10 – Second visit with Johns Hopkins. Dx, PLS.
Feb 10 – Began taking Rilutek
Feb 10 - Cannot stand for barely 2 minutes, seeking power wheel chair for inside the home
Thanks everyone for your assistance.
For my husband progression has been:
2000 – numbness in feet and feet spasticity (only at night time)
2005 – balance issues began
2006 – began seeking medical treatment for balance issue. Resulted in 2 cervical fusions (later found unrelated to symptoms)
2007 – balance issues continue to get worse (neurologist does not mention PLS or anything else)
Aug 07 – my very active husband has to give up golfing, which he did about 3x week.
‘07-‘08 – a number of MRIs are done, blood test, lyme disease test, lumbar puncture etc are performed still with no diagnosed.
Aug 08 – begins using cane for balance, can barely walk 40 feet without rest, can stand 5 minutes tops
Sep 08 – First visit with Johns Hopkins. MS and HSP are ruled out, first time advised “probable PLS”.
Sep 08 – Began taking Baclofen (80mg/day)
Oct 08 – begins using wheelchair when walking requires more than 2 – 3 minutes
Oct 09 – begins using walker, can no longer drive
Jan 10 – Second visit with Johns Hopkins. Dx, PLS.
Feb 10 – Began taking Rilutek
Feb 10 - Cannot stand for barely 2 minutes, seeking power wheel chair for inside the home
Thanks everyone for your assistance.