Bill

I’m with Ginger. The hardest for me daily so far is eating. I’m scheduled for feed tube in about a week. I went from loving to cook and eat to dreading it. I’m hoping eliminating the stress with enable me to enjoy eating a small amount at meals with family.

It is virtually impossible that I do not have a mutation as my father and brother died from MNDs  both different from my ALS. A sister has a different non fatal neurological disease.  Genetic testing failed to find a mutation. Hasn’t changed my life of course but has caused fear in our surviving younger siblings. They are aware of potential ris…[Read more]

Does anyone know yet of medicare position on Oral Radicava? I’ve never done the infusion so don’t even know what that would cost me with my Medicare advantage drug plan.

I think you just have to believe the study results forAMX 0035. The improvement is small enough you need the study., I don’t believe it to be enough that people could tell the slow progression change. I would not trust opinions positive or negative. Hopefully phase 3 willl bring stronger results. I’ve read so many reviews of Radicava and Ril…[Read more]

As far as cure, not one yet. Many people use Riluzole and Radicava the only two released treatments. At best they slow progression. There are  some other drugs in development which also may slow.  I use atropine drops myself for saliva and find they do work but short duration.
You need to get to ALS clinic for ongoing advice as well as get a…[Read more]

Seems the things that get researched are strictly things that can be monetized. I’m with Dagmar on research of exercise and it’s affect on disease progression. Another is nutrition and type of diet. In clinic , I hear physical therapists give vague guidance. I’ve been for a couple sessions and soon realize many of them don’t understand. ALS. I’…[Read more]

I pretty much match the majority results. Would I like to find a treatment.? Of course, but also realize they aren’t there yet.  So far Medicare has been fine for me but time will tell. Trials are hard to get in if you aren’t newly diagnosed and frankly are not testing life changing stuff. For the newly diagnosed I think they look on them with more hope.

I am limb onset slow progression and have started bulbar affects in last 18 months or so. My biggest bulbar issue is atrophy in tongue which causes me to have to concentrate eating to avoid biting cheeks and tongue. Eating is a pain. Can drink ok just can’t use straw anymore. Get flooded with saliva and sinuses. Take ipratropium for sinus and as n…[Read more]

My dad’s birthday is this week. He died from FTD with MND 20 years ago. My brother Kevin died 3 years ago from MSA another MND. They are long past the suffering of our family of MND’s. Their memories remain.

Duane,

search Dr Bedlack and Clenbuterol. He does a YouTube slide show and talks of this. not sure if this  link will take you there.

Lisa  one place I read about supplements is Alsuntangled.  It’s a site from Dr Bedlack at Duke.

With me a problem with my thumb was what started me at an orthopedist. Besides arthritis he suspected nerve problem. He referred me to neurosurgeon. They performed nerve studies but could cone up with no diagnosis. I then went to local neurologist whose method was to just wait and see. No diagnosis. I insisted on referral to a university MND…[Read more]

Here is paragraph from ALS worldwide from Feb 2015.

“The branded Rilutek is expensive. However, the generic, riluzole, has a retail price per capsule without insurance of $3/pill. Insurance can bring this cost down significantly. Medicare and the VA cover riluzole, and the National Organization for Rare Diseases can help support the cost if n…[Read more]

I too am really interested about future of Clenbuterol use although huge drop out rate due to side effects was concerning. I read comments in so many forums of people looking to copy others supplements. I’m with Dagmar in using very few basic “supplements”. My blood tests revealed borderline on a B12 and D so I supplement. I take Theracurmin becau…[Read more]

Thanks Dagmar,

I’ve had two visits with speech therapy plus lots of clinic visits. I received no advice on improving speech. Mostly telling about technology. My problem is tongue atrophy plus heavy mucus at times. Tongue much worse when tired.I had recently added a good iPad text to speech app to learn.

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.