Bill

Carol, yes I’ve been diagnosed with ALS for 4 years now. My brother was diagnosed with MSA (multiple systems atrophy) and died from it about 2 years ago. He went quick unfortunately.

My wife and I have had  vaccine and boosters. We really don’t restrict where we go out. If going somewhere around  lots of people we have brought back our masks.  We don’t closely socialize with those unvaccinated.

Carol

I feel your frustration with the “see you in 6 months”. I had same but pushed for referral to a teaching hospital with a research and ALS clinic. Took about 7 months to get appt. My brother at same time as was also looking for diagnosis. We had very different symptoms and different MNDs. After a crisis, he went to a ER at a University hos…[Read more]

Maya,

I’ve found the Patientslikeme site helpful. Lots of pALS there who post daily. They do have tools on the site to do your FRS and track other ALS related  stuff. You will see the full range of progression ALS. People over 20 years as well people quickly progressing. People on there are helpful and supportive.

Trials now all seem be limited to newly diagnosed. I always ask but having ALS for 5 plus years rules me out.  Only ones I found were the very limited phase 1 testing human tolerance. I do try to contribute by participating in every survey I can find and the ALS TDI precision medicine program.

I’m all signed up and participating.

The video Richard attached is a good explanation. I’ve encountered very many pALS in my almost 4 years of on line forums. I’ve seen a number of 15-20 year survivors as well as rapid progression pALS. I have seen a whole lot of variance. If you track and plot  your FRS monthly you can tell the rate you are progressing vs the “average” for what tha…[Read more]

Glad to hear that Len I know of another whose insurance covered also. It would be worthwhile for people to check.

I hope the phase 3 trial shows better results than the phase 2. The results were similar to Riluzole (or less) depending on different Riluzole numbers. Highly hyped in Amylyx investor releases. Some people misunderstand what significant means in a drug study data. It means a significant correlation showing with results. It does not mean…[Read more]

I’m almost 4 years post diagnosis. 5 years from starting search for your diagnosis. Probably had first symptoms 6+ years ago at least. Both my university neurologist, an ALS researcher and professor and my local ALS clinic doctor basically convinced me not to take either as they did not foresee them helping me with my progression rate. Obviously R…[Read more]

Carol, my ALS does not have the things you mentioned. I do have spinal stenosis but not enough to do anything about. ALS is widely varying among individuals. I’m mostly on the lower motor neuron disease spectrum so have muscle atrophy weakness but very little stiffness or pain other than age related arthritis. Good luck, hope you find doctor t…[Read more]

I’ve had sleep issues for years. After I got my ALS diagnosis my sleep just continued to get worse. I tried staying up later which helped for a while. Eventually I got prescribed a sleeping pill which I take maybe once or twice a week, I do take generic Benadryl one tab nightly which helps dry me up a little and helps sleep. If I really am c…[Read more]

Carol, I’ve been using Theracurmin 2x per day for 3 years. I think it helps my arthritis stiffness but can’t tell if it does a thing for my ALS. All the reviews I’ve read say they can’t tell if it helps.

I know it’s probably a reach but one of MSA things is catastrophic blood pressure drops. Could be your brother had that. The medicine to counter it wasn’t precise. My brother had also as disease progressed found movement and speech difficult. He was bedridden. Good luck to you.

For us it will be having family here for dinner. Kids and grandkids. That itself is enough.

Familial ALS. PreFALS has people with family history of ALS but are not diagnosed yet themselves. I was in it but since they couldn’t find which gene has caused my family’s MNDs , I was dropped and my kids not included. Good study.

Mikael, my brother was also first diagnosed with Parkinson’s. After the Parkinson’s drugs did nothing further testing brought the Multiple Systems Atrophy. Survived about 2 years from diagnosis maybe 4 years from first symptoms.

Mikael

My dad died from FTD and my brother from MSA which can look like Parkinson’s as it starts. Two different MND than my als.  Both were formally diagnosed.

Mikael,

I had problems with local “experts” . Had neurosurgeon who said I did not have ALS. He gave me nothing but just wait. I then went to another local neurologist who would t even run any tests just wanted to wait 6 month periods between visits. He didn’t think I had ALS. I insisted on getting referral to university. That took over 9 month…[Read more]

Carol, Cumin and Thercumin I don’t believe the same thing. Theracurmin is Tumeric. I’ve been taking for 3 years and although I frankly don’t think it has done anything for my ALS (who can tell?) , it does seem to help my neck pain from arthritis I believe. To my knowledge has not affected my appetite. We are all different though.