als centres

irismarie · 02-09-2010, 02:05 AM

I am trying to get sent to an ALS centre to get help instead of returning to the unhelpful neuros at my local hospital. I want advice in preparing for the next stages instead of repeating all the ^ù)=*ing RMIs an EMGs.
But when I looked the ALS centres' statistics, Boreaux had had 62 patients in a year and Toulouse 52. It does not seem much, even though this IS a rural part of France.
Not a lot to become expert upon.

indigosd · 02-09-2010, 07:13 AM

What percentage of the population is this? I think that sounds high, don't you? What advice is it that you are looking for about the "next stages"? You know that Web and I decided to not return to the "ALS Center"-waste of time and money. We are seeing our local Family Dr. and couldn't be happier. It would be different if there was a proven treatment or even a research study that he could participate in...We are just living our lives moment to moment or should I say from one MAKES ME WANT TO HOLLER moment to the next! xo Kay Marie

irismarie · 02-09-2010, 07:37 AM

Well, I was thinking about the vents, trachs, etc....

Melodyparrish · 02-09-2010, 08:32 AM

My understanding is that literally every person's journey is different, and it's more important to know strategies and interventions you want as you approach each hurdle. I agree with KayMarie, that 60 is alot. Remember, that the number of people diagnosed is only 2 in every 100,000. I think finding a compassionate, involved doctor is probably more important than and "expert in ALS"

irismarie · 02-09-2010, 10:38 AM

finding a compassionate involved docor - that is the problem
I have drunk half a glass of port and feel completely drunk It has taken me ages to spell docoge:socto:docotv:docoteo:doctor;..

halfin · 02-09-2010, 11:56 AM

Hi, Irismarie, I think you are still technically looking for a diagnosis, is that right? Unfortunately that will probably mean enduring more tests. But seeing the doctors at the ALS clinic is going to be your best bet for getting an accurate diagnosis of ALS. Keep in mind too that if there is still some chance that you might have a treatable condition, the sooner you find out the better. I have heard stories of people with an ALS diagnosis who turn out to have something else, and when they treat that they halt the progression but do not fully recover. So it would be good to press on with the diagnosis process even if it is unpleasant.

Zaphoon · 02-09-2010, 01:16 PM

IrisMarie,

I agree with Hal in that the ALS clinic is probably going to be your best bet in getting to the bottom of things. This means you will most likely have to endure more tests and repeats of things already done (i.e. EMG/NCV/MRI, etc...).

My hope is that you find a friendly, smart and compassionate staff of doctors at the clinic.

How flavorful is your Port?

Zaphoon