- Joined
- Aug 16, 2024
- Messages
- 2
- Reason
- DX MND
- Diagnosis
- 04/2024
- Country
- PT
- State
- FR
- City
- Burgau
Hello,
I am a 64 year old male who began experiencing muscle loss about a year and 1\2 ago. After my third EMG/NCS exam, I have been given the prognosis of “probable MND.” I live in Portugal, and have been referred to the premier Portuguese ALS specialist in Lisbon. This is after my 4th neurologist gave me the “probable MND” based upon the progression of muscle and neuron loss comparing the 3 EMGs each roughly 4 months apart (the first 2 neurologists were positive ALS, the 3rd maybe).
My symptoms are loss of the use of various muscles in both legs due to MND. They tell me that my progression of muscle loss due to MND is very, very slow. I have the other ALS symptoms fibrillations and fasciculations and do not wish to waste members time describing them. I walk with a limp like FLS and use a cane so I don’t topple over on a hill where my right leg is downhill. Climbing hills and stairs are very difficult.
My burning question is what is next? What signs do I have before I have more muscle loss? For instance, I recently walked a lot while traveling. Now more muscles (upper hams and glutes are very weak and tired.) Is this just compensating muscles that are tired or new muscle loss. I am fortunate to not have any weakness in my upper body as of yet — only the fibrillations and fasciculations.
Are there resources describing patterns of loss so that I can observe the signs and be on top of the next use losses to prepare my family and stay ahead of it? Or, is it “you will never know what is next until it happens”. For instance, I think I notice unique cramps and spasticity at night that occurs over a week that seems to lead to use loss. Are those the signs?
I am not distraught and am prepared for what may come with a humble heart and high spirit for the life I have had. By gaining insight to progressions and timing, I can prepare so as to not to be a burden to my family and others.
I have researched enough to anticipate the answer that all cases are different, so there is no predictive help, but I thought I would ask.
I am a 64 year old male who began experiencing muscle loss about a year and 1\2 ago. After my third EMG/NCS exam, I have been given the prognosis of “probable MND.” I live in Portugal, and have been referred to the premier Portuguese ALS specialist in Lisbon. This is after my 4th neurologist gave me the “probable MND” based upon the progression of muscle and neuron loss comparing the 3 EMGs each roughly 4 months apart (the first 2 neurologists were positive ALS, the 3rd maybe).
My symptoms are loss of the use of various muscles in both legs due to MND. They tell me that my progression of muscle loss due to MND is very, very slow. I have the other ALS symptoms fibrillations and fasciculations and do not wish to waste members time describing them. I walk with a limp like FLS and use a cane so I don’t topple over on a hill where my right leg is downhill. Climbing hills and stairs are very difficult.
My burning question is what is next? What signs do I have before I have more muscle loss? For instance, I recently walked a lot while traveling. Now more muscles (upper hams and glutes are very weak and tired.) Is this just compensating muscles that are tired or new muscle loss. I am fortunate to not have any weakness in my upper body as of yet — only the fibrillations and fasciculations.
Are there resources describing patterns of loss so that I can observe the signs and be on top of the next use losses to prepare my family and stay ahead of it? Or, is it “you will never know what is next until it happens”. For instance, I think I notice unique cramps and spasticity at night that occurs over a week that seems to lead to use loss. Are those the signs?
I am not distraught and am prepared for what may come with a humble heart and high spirit for the life I have had. By gaining insight to progressions and timing, I can prepare so as to not to be a burden to my family and others.
I have researched enough to anticipate the answer that all cases are different, so there is no predictive help, but I thought I would ask.
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