Very worried awaiting diagnosis

[jonboy53]

You don’t have ALS
Why?
1) you have parasthesia
2) you don’t have fasiculations
3) You have no measurable progression in 5 months

[Olivia H]

It would be great if there was a definitive diagnosis/test for such a serious condition, rather than the prolongued process that so many of us have to go through. I personally have lots of symptoms which are not common to mnd, but others that are, and 2 emg tests have been definitive. But my symptoms have barely changed in 6 years, after the first 6 months, which is pretty unusual. I can only feel for those who suffer the rapid progression of this horrible condition. Equally, I strongly believe in being positive and adapting to survive. When I was first diagnosed I got the distinct impression the medical people expected a fast decline but thankfully not so. I stop looking for little changes and hyper scrutinizing everything because I think it makes you worse. I think this can be beaten.

[Kayleigh]

Hi Olivia,

I like your positive attitude.

It is good to hear that your symptoms have barely changed in the last 6 years.

I don't know what the future holds concerning how quickly my health is likely to decline. Like you and many others on this forum, I try to focus on living life as fully as I can - there are still happy times to be enjoyed and special memories to be created

Kayleigh x