Symptoms that bet better or go away in the early stages ?

[WorriedGuy1999]

Hi everyone,
I will try to make this very quick. I had some functional issues a year and a half ago, together with fasciculation. These were completely unexplained, however they went away. The weakness lasted only few months and progressively improved. EMG showed something in those muscles locally, but no definite ALS. I am here after year and a half stressing again, that it was ALS, as I found an article, which stated that an ALS patient presented with a wrist drop, which actually got better, after two years he developed knee and foot problems which also got better and let him participate even in sports and after another 2 years the typical ALS progression started. So since first wrist drop he had 2 remissions, got better and only after 4-5 years developed typical ALS. Since most of you here know a lot I wonder, is this typical ? Or is it very rare to happen in the beginning, that progression stops or goes away for some time ? Thank you very much I appreciate it.

 

[Nikki J]

Please link the article.
if it really happened it is exceedingly rare. I would like to know how they determined the initial problems were ALS and not something else.
plateaus ( staying the same at some time for several months or more after diagnosis are quite common. Sustained remissions are very rare. A neurologist who has been studying them for years has documented 45 cases total

 

[WorriedGuy1999]

Hi Nikki, I highly appreciate your reply, I had no idea I could post article links.

(PDF) Preclinical and subclinical events in motoneuron disease

PDF | It is suggested that in motor neuron disease there is a long preclinical period of relative tolerance and compensation before presentation with... | Find, read and cite all the research you need on ResearchGate

www.researchgate.net

It is case two, the policeman. It would be great if you could take a look thanks.

Also how do you define a sustained remission ? Because this case did degrade afterall, however he had remissions which I do not know if they would define as sustained. The 45 cases actually never degraded again or just had a remission for some time ?

 

[Nikki J]

This is extremely old. 1988. Before you were born. and it was clearly rare. People don’t write case studies about things that happen a lot. It seems like he did have some inexplicable improvement. One person. Over 30 years ago

the doctor defines plateaus as 6 months or longer. I am not sure about remission. I think they were ok when he assessed them

anyway I think you are definitely overgoogling. Something happened to you 18 months ago you got better and you are searching out 32yo articles about a disease you don’t have symptoms of. Are you happier for doing so ? Did reading this help you at all?

 

[WorriedGuy1999]

Dear Nikki, thank you for the reply. I replied late because I had some "block" for 2 days and could not post, and was offered to buy some sort of premium, after that I forgot. Please let me ask one more question. How common is it for ALS patients to develop a symptoms (I mean a functional one like weakness) which stays stable for about 2 years without further progression in the specific area of other areas of the body and only after that long time starts progressing again ?

 

[Nikki J]

I don’t know anyone who had a plateau that long. My aunt had a 16 year journey but even she did not have an extended plateau that long

 

[WorriedGuy1999]

Thank you, do you think that the pathology of plateau is different between a patient who is already diagnosed and a plateau in a person not diagnosed yet with only one area affected ?

 

[Nikki J]

No. please, enough. If you have further concerns see your doctor.