Gorby

Thank you, Lori. I have my fingers crossed that Macdonald's may still have a source for the quinidine. We also used Macdonalds recently to get high-dose injectable vitamin B12 for Michael, recommended by ALS Worldwide. Had hoped it would have positive effect, but so far, no real evidence of any change. However, Michael started on CBD oil last week, and that has immediately reduced the muscle cramping he was having in his legs at night.

Hello! I checked the HSP/PLS group on FB, but can't find the mention of mexilitine. Are you able, by any chance, to forward that link here, or tag me on the post? I am intrigued now!
Also, I wish you luck with the CBD oil. Pretty sure it's why I don't have as bad spasticity as I used to.

Thanks Fiona. I guess it's not quite mainstream yet - I also feel shady and I don't even like THC. My progression seems to have accelerated the last few months. If there is any chance that the CBD will help, then I'm willing to give it a try. At the very least, maybe it will help with sleep.

Gorby, I am lucky to have a private source.
However, the absolute best place is the Compassion Club (website is easily found online-in Vancouver). They require membership, but they are a long running legitimate holistic health centre. They have a membership form you can get your doctor to sign. If you are reluctant to do so, they will accept something with your diagnosis indicated. Their staff is knowledgeable and will be able to help you choose the best oils for you. I sound like a paid advertisement, but I have heard really good things about them. A friend of mine's mother was being treated for brain cancer and found a great deal of assistance there.
I know that Realms of Caring is an online place- I think they can ship to Canada. They're very knowledgeable and can assist you with figuring out your needs. I know many people with MND order from them.
I hope that helps. I always feel a bit shady discussing cannabis. I am a product of the anti drug crusades of my youth!

Fiona