Nearly 3 years of symptoms -No diagnosis

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AndyM

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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
 
34 months of symptoms, no functional loss, and 4/4 neurologists are telling you they don’t see ALS/ MND. And 3 EMGs, 2 of which showed chronic changes.
You don’t have ALS. You’re good to go! There’s really not much more we can tell you. If it’s hard for you to stop chasing after a disease you don’t have, then I recommend getting help for that obsession.

best of luck to you.
 
34 months of symptoms, no functional loss, and 4/4 neurologists are telling you they don’t see ALS/ MND. And 3 EMGs, 2 of which showed chronic changes.
You don’t have ALS. You’re good to go! There’s really not much more we can tell you. If it’s hard for you to stop chasing after a disease you don’t have, then I recommend getting help for that obsession.

best of luck to you.
Thank you Karen -have been told that timescale goes in my favour but I saw a Podiatrist who could see the size difference on my legs and he mentioned that slow onset was a possibility but did say that after this length of time I would be a rare case if it was ALS/MND -again thank you for your reply .

Kind regards

Andy
 
the opinion of one podiatrist vs 4 neurologists? Really? A podiatrist goes to podiatry school not medical school
 
Dude, seriously, time to let it go. No matter how much you chase and obsess over getting an ALS diagnosis, it ain't going to happen. You have nothing that says ALS. Be glad and move on from this forum. It's been long enough.
 
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