judy.king
New member
- Joined
- Aug 11, 2015
- Messages
- 9
- Reason
- PALS
- Diagnosis
- 03/2019
- Country
- US
- State
- Fl
- City
- Gainesville
About 3-4 years ago I came to this forum and asked the dreaded question "Do I have ALS". I had some fasciculations and cramping in my feet, balance issues, spasticity in both legs and slight speech changes. I was assured by members that my symptoms were NOT symptoms of ALS and I went merrily on my way. 1-2 years later I was just diagnosed with ALS by Mayo Clinic after my 3rd EMG in 4 years was dirty...the first one was clean and second non-diagnostic. I do not say this to scare anyone but it's very important to understand that the onset of ALS can be different for everyone. Not everyone has sudden foot drop or a hand that doesn't work. Not everyone has speech issues, but ANY speech changes should be evaluated and that workup should include ALS. I have had slowly progressive decline over the last 3 years until last summer when I began to decline more rapidly. Thankfully, I had already seen a neurologist at Mayo who had suspicions of MND and was able to get in quickly to see her. Now I'm being followed at the ALS clinic at Mayo. I've gone from walking with a rollator to full time in a power wheel chair. I can stand and walk some with something to hold on to on each side of me. My arms are much weaker although I still have use of both hands. My speech is worsened somewhat over the last year but I am still able to be understood and on "good days" it is just a slight slurring. My tongue still works, so it's not true that your tongue just lies useless in your mouth. It is that way for some...and not that way for many.
I just want to remind members that we are not physicians and there is no typical presentation of ALS. That's per my neurologist AND neuromuscular specialist. My ALS doc said that in the neuromuscular medical community the prevailing thought is that PLS and ALS are probably the same disease and why some people progress quickly and others don't is not fully understood.
I pray that no one that comes here asking questions ends up positive for ALS but everyone showing NMD symptoms of any kind should be seen and evaluated.
I just want to remind members that we are not physicians and there is no typical presentation of ALS. That's per my neurologist AND neuromuscular specialist. My ALS doc said that in the neuromuscular medical community the prevailing thought is that PLS and ALS are probably the same disease and why some people progress quickly and others don't is not fully understood.
I pray that no one that comes here asking questions ends up positive for ALS but everyone showing NMD symptoms of any kind should be seen and evaluated.