dkcarl62
Distinguished member
- Joined
- Nov 12, 2014
- Messages
- 220
- Reason
- DX UMND/PLS
- Diagnosis
- 03/2015
- Country
- US
- State
- mi
- City
- Novi
Hi all,
Not sure where to post my question/concern on this site, so I'll start here.
My UoM neurologist has ordered a repeat cervical MRI. The MRI done a year ago was normal. If this MRI comes back normal, then she will give me a definitive diagnosis of primary lateral sclerosis.
My progression (decline) in the last 6 months has been steep. My concern is that if this progression continues at this rate, I won't be able to walk 6 months from now. I thought that PLS had a much slower progression? Anyone have thoughts or experience with that?
Another concern is her comment "Persons with primary lateral sclerosis can convert to amyotrophic lateral sclerosis, typically within 5 years of symptoms onset." Does anyone know what the percentages or likelihood of that happening is? She is concerned about my muscle atrophy in my calf, although EMG test was negative. I'm exhibiting enough other signs to make her concerned for conversion.
Last question. How do those of you who have been diagnosed maintain hope?
Debbie
Not sure where to post my question/concern on this site, so I'll start here.
My UoM neurologist has ordered a repeat cervical MRI. The MRI done a year ago was normal. If this MRI comes back normal, then she will give me a definitive diagnosis of primary lateral sclerosis.
My progression (decline) in the last 6 months has been steep. My concern is that if this progression continues at this rate, I won't be able to walk 6 months from now. I thought that PLS had a much slower progression? Anyone have thoughts or experience with that?
Another concern is her comment "Persons with primary lateral sclerosis can convert to amyotrophic lateral sclerosis, typically within 5 years of symptoms onset." Does anyone know what the percentages or likelihood of that happening is? She is concerned about my muscle atrophy in my calf, although EMG test was negative. I'm exhibiting enough other signs to make her concerned for conversion.
Last question. How do those of you who have been diagnosed maintain hope?
Debbie