dp1969
Active member
- Joined
- Apr 23, 2010
- Messages
- 46
- Reason
- PALS
- Diagnosis
- 06/2010
- Country
- US
- State
- CO
- City
- Denver
I am new to this forum and wish I never heard about it!
I am 40 yrs old Married with three beautiful daughters; Abby 13, Hannah 10, and Gracie 7.
I was diagnosed with Monomelic MND in December of last year. Physician was a real charmer..."congrats you have MND, not ALS. Can't use your arm/hand and it WILL progress, can't tell you when so enjoy what life you have left". Hopefully some day he will get his:evil:!
Similar story as all those I have read...right arm/hand weakness & atrophy started in July of 2008; had a c4/c5 fusion done in early 2009 and symptoms continued to progress. At this point I have lost almost full use of my right arm/hand.
Since diagnosis in December I have started to get fasciculations throughout; mostly in my left arm. I am also noticing spacticity in my legs and increased weakness in my left arm. Obviously I am scared, concerned, angry, etc. etc.
Does anyone know of studies that track fasciculations (amount, location, timing) to ALS progression?
Also, any insight into helpful ways to slow progression are appreciated. I am on massive supplements (Vit B, E, and anti-oxidants). As well as an organic and gluten free diet.
Thanks,
Dan
I am 40 yrs old Married with three beautiful daughters; Abby 13, Hannah 10, and Gracie 7.
I was diagnosed with Monomelic MND in December of last year. Physician was a real charmer..."congrats you have MND, not ALS. Can't use your arm/hand and it WILL progress, can't tell you when so enjoy what life you have left". Hopefully some day he will get his:evil:!
Similar story as all those I have read...right arm/hand weakness & atrophy started in July of 2008; had a c4/c5 fusion done in early 2009 and symptoms continued to progress. At this point I have lost almost full use of my right arm/hand.
Since diagnosis in December I have started to get fasciculations throughout; mostly in my left arm. I am also noticing spacticity in my legs and increased weakness in my left arm. Obviously I am scared, concerned, angry, etc. etc.
Does anyone know of studies that track fasciculations (amount, location, timing) to ALS progression?
Also, any insight into helpful ways to slow progression are appreciated. I am on massive supplements (Vit B, E, and anti-oxidants). As well as an organic and gluten free diet.
Thanks,
Dan