Bill

I will be interested in the discussion myself as I’m at same place for deciding on bed. Does your husband use a NIV at night? Can he get in and out  himself ?

The slow and difficult definitive diagnosis of ALS is the reason there are studies always looking for biomarkers of ALS. Especially with slow progression ALS , the early symptoms can be other MNDs.

Angela,  my ENT recommended same thing with the  sinus rinse. I haven’t tried as I was a bit fearful of that in sinuses. Guess I should try.

Hi Patricia

I too am plagued with the mucus.I just recently got a feeding tube and now am taking Liquid guaifenesin (Mucinex ingredient) through the tube. Helps me to thin and clear thick stuff. I also take ipratropium bromide through a nasal inhaler which ENT prescribed to slow nasal secretions. Very important not to get dehydrated as that…[Read more]

Doug,  I usually sit and not eat or pick at something soft. They understand. My speech  is tough so spontaneous back and forth with group is frustrating. My weight loss was slow as chewing issues developed slowly over a year. Snuck up on me   . Finally got too much so I went for tube. I went from 181 to 169 getting tube and slowly ramping up am…[Read more]

Hi Doug,  your progression so similar to mine. I lost my left arm first. I was diagnosed 4.5 years ago and likely 7 plus years with ALS. My eating become just like yours starting 6 plus months ago. I have tongue atrophy. I really fought it and lost too much weight as I just couldn’t eat enough. A month ago I got a feeding tube and now get en…[Read more]

Lots of people did the two drugs to make their own. I don’t remember hearing major improvements.  Very expensive, can’t imagine real thing will be cheaper.

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]