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… 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… 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… 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… 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… 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… 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.… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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.

Mikael,

I notice you are in St Petersburg? Have you visited USF in Tampa? I’m from further south in Florida but ended up coming up to USF then to USF  ALS clinic where I was diagnosed by Dr Vu the director of the ALS clinic. The neurologists locally couldn’t commit to a diagnosis. The clinic is a full research and treatment clinic. Analysis of… Read more

Good luck Amanda. Hopefully the Toferson can develop into something meaningful. Maybe for preALS with the mutation. I don’t have SOD1 but hope it can develop for those who do. Hopefully not just an expensive very incremental improvement. I just see too many of my online pALS die each year.
In the meantime, our weather getting nice here anyway!

I think the reference is to coffee and NSAID pain relievers.

My only diagnosis has been ALS. As far as family members we have had FTD, MSA both fatal, a rare nerve disease of the vocal cords and my ALS. Four diseases , all rare,  four different family members. No clue yet as to what genetic mutations in play. 3 of 4 are in genetic study.

Scotty,  I’ve learned more about the personal lives and daily challenges of pALS on the patientslikeme site. There are many people active on site daily. You get to know people.  It is sad your bil appears to be fast progression.  There are all progressions on the site, I’ve been disappointed on the big facebook sites myself.

How has my diet changed since ALS? Ive likely had ALS for at least  6 or 7 years so I’m just speaking in terms of my ALS diagnosis nearly 4 years ago. For the first two years no change at all. Just a relatively healthy balanced diet. As I neared third year I started to lose weight. I tracked intake carefully and find I need a lot of calories to… Read more

Amanda,Good luck with the lumbar puncture and thanks for being in the preFALS. They booted me when I did not test positive for any of the known familial mutations. My family must have a mystery gene. As for me I’m just living what I call my normALS life. Enjoying what I can surviving a couple of falls. I’ve quite the collection of stitches.… Read more

Makes sense although a little simplistic. It seems to skip getting referred to a neurologist before the jump to an ALS clinic. My early symptoms clearly were a possible MND also possible cervical spine issue. My first referral was to a a neurosurgeon then to neurologist. I suppose I could have waited for neurologist to make a diagnosis… Read more