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

[jonboy53]

Hi Olivia,
ALS definition is quite clear UMN and LMN and rapid deterioration. I can look back in my time to attributable symptoms starting in 1995 however it would be called PLS these days. Be very clear MND is a very wide ranging disease with many symptoms, but ultimately you will end up with ALS full blown or Bulbar full blown - but it’s all motor neurone damage and we will all die from it. I spoken to lots of people in palliative care and the worrying new problem is people are trying to fake having MND ..............Why on earth would anyone do that????

I wasted two hours on the phone talking to Shepster to stop him worrying over Christmas ........ I feel a bit gullible now ...........thanks for updating me shepster

I can see why genuine MND patients are seeing more resistance to a firm diagnosis from consultants.

As you can guess I am a bit angry.