Recently Diagnosed; Familial ALS

[DebbieD]

hi all!

i was posting last year before my mom passed away in january this year. she had als as well as her brother and her cousin.

i was diagnosed last month with very early onset of als. i had an mri test and i have no nerve damage. however my doctor at sunnybrook feels that i do have als and has prescribed me riluzole.

i started noticing slurring problems after i'd had a couple of alcohol drinks in the summer. then i noticed i was having trouble with speech even without a drink. i was lucky that i didn't have to go through months of testing and ruling things out. my mother's doctor saw me 4 days after i e-mailed him and set me up with the mri right away.


i'm going to be involved in a stemcell research program at sunnybrook. my doctor has got full funding and needs 5 volunteers and someone to head the study. i'm volunteer number 4. this is not embryonic stem cells. the stemcells come from our own bodies.

i'm a very "up" kind of person and i'm not at all depressed about this diagnosis. i have to keep reasuring my father and my family that i'm okay.

i'm 47 married for the second time to the most wonderful man, dave. we have 5 kids altogether all grown, but 2 still living at home. we also have 3 granddaughters.

i've always thought that this site was wonderful and all the people who post too!

 

[bear2]

Hi DebbieD,

You seem as though you are a very upbeat person and very strong as well. I hope that the stem cell study is of great benefit to you and every other PAL out there. Have you any idea how long the study will be going on for?
I think that you folks in Ontario must have a lot better doctors than we here on the East Coast do. They seem to be quite involved and caring.
Be sure to stay in touch and let us know how the study progresses. Hoping for the best for you,
Keep posting,
bear2

 

[TBear]

Hi DebbieD:

Sorry you are in this state... but glad you are back with us. I'd heard of the results of the research a couple of years ago at an ALS walk with the neurologist. Glad that it is in the trial stage now and that you are eligible. I hope for yours, and everybody's sake that it helps your symptoms.

I think that it's people like you, who are not afraid to step in the cause of organized research, that will eventually lead to a solution for this.

Cheers

T.