Diagnosed with ALS on 9/22

[Nikki J]

Aside from mouse models not translating the negative study was in sod1 the positive was in c9. This is hardly surprising given the different pathologies whether anything will come of the c9 study remains to be seen. As for non sod1 non c9 als who knows whether it would help hurt or do nothing. Everyone has to choose their own path but if you have a good neurologist listen to their thoughts too

 

[Mana]

Has ALS Untangled researched Metformin?

 

[Nikki J]

I do not believe so. There is a current trial for it in Florida though specifically for c9 I think there is a bigger trial being planned but probably also c9. The mechanisms proposed are for c9. Metformin has anti inflammatory properties though and other forms of ALS often have an inflammatory component I am sure there are many PALS who have been on Metformin so if anything positive comes from the current trial people will likely try data mining PROACT if they are not already doing this.

 

[Mana]

Thank you

 

[Dot Nichols]

Welcome, JodiR. You will find wonderful support from this forum. We also are snowbirds from WA to AZ. The AZ Clinic s happy to care for us year around via their portal, though it has helped to stay in close touch with someone local. in WA..in our case the primary doc, since the portal route sometimes takes several days. It is tricky to get necessary equipment in both places, since medicare pays for limited equipment. The AZ ALS support group is very active and helpful. The AZ winter sun is such good medicine. All the Best.