AndyM
New member
- Joined
- Oct 16, 2019
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- SX
- City
- Chichester
Hi there -I posted to this forum 2 plus years ago when had symptoms then left group but I am back , I am 34 months into symptoms now and still have no diagnosis , and looking for some advice ,have seen 4 neurologists 2 privately and still no diagnosis although I still am concerned it is ALS/MND but slow onset ,have had 3 EMGS two of which showed Chronic neurogenic changes but was told this nothing to worry about?
My Symptoms as of now are:
Muscle loss/atrophy -legs/arms ,hands and feet -have a difference between bottom of calf down to ankle on left side half an inch compared to right ,wrists seem to be thinning both sides
Bodywide fasiculations which initially started in left calf in April 2017, Lower Back pain ,pain in ankles ,knees, wrists ,feet , hands etc, Lower Back pain ,pain in ankles ,knees, wrists ,feet , hands etc ,when I lay down I feel breathless and breathing changes
As I stated I have seen 4 neurologists and all 4 have said not ALS but last neuro felt problems could be due to issues with my spine , I have degenerative disc disease top to bottom , spinal stenosis in Lumbar region and also a herniated disc in lumbar too.,I am still mobile walk without aids and able to function ok and my question reason for the post is the time scale -I am nearly 3 years from first symptom and nothing has failed yet and am still able to walk 3 plus miles no problem ,I don't use any walking aids at all ,am able to stand and walk on tiptoes /heels etc and have no problem with buttons/jar lids etc -my question is if I did have slow onset ALS/MND would I still be able to function as I am nearly 3 months after first symptom (which was lower back pain in December 2016). Many thanks for taking time to read my post
My Symptoms as of now are:
Muscle loss/atrophy -legs/arms ,hands and feet -have a difference between bottom of calf down to ankle on left side half an inch compared to right ,wrists seem to be thinning both sides
Bodywide fasiculations which initially started in left calf in April 2017, Lower Back pain ,pain in ankles ,knees, wrists ,feet , hands etc, Lower Back pain ,pain in ankles ,knees, wrists ,feet , hands etc ,when I lay down I feel breathless and breathing changes
As I stated I have seen 4 neurologists and all 4 have said not ALS but last neuro felt problems could be due to issues with my spine , I have degenerative disc disease top to bottom , spinal stenosis in Lumbar region and also a herniated disc in lumbar too.,I am still mobile walk without aids and able to function ok and my question reason for the post is the time scale -I am nearly 3 years from first symptom and nothing has failed yet and am still able to walk 3 plus miles no problem ,I don't use any walking aids at all ,am able to stand and walk on tiptoes /heels etc and have no problem with buttons/jar lids etc -my question is if I did have slow onset ALS/MND would I still be able to function as I am nearly 3 months after first symptom (which was lower back pain in December 2016). Many thanks for taking time to read my post