Bill
Forum Replies Created
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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 hospital (different state than I) and got into a real specialist earlier. Good luck.
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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.
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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.
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I’m all signed up and participating.
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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 that’s worth. Any one person’s “markers” or progression points really only apply to them for what I’ve seen.
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Glad to hear that Len I know of another whose insurance covered also. It would be worthwhile for people to check.
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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 necessarily a significant improvement.
Post should also be asking what results this mix is bringing. -
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 Radicava not easy to take. I believe , if oral Radicava pans out, I may try.
I know lots of pALS who take both and have been for a long time. Those taking Radicava seem to stick with it, I’ve met lots taking Riluzole since their diagnosis and a number who quit it due to side affects. Seems they really don’t know the affect but don’t want to stop.
All you can do is read the studies which say both help some but do not stop the disease. Our individual variation in progression makes an accurate measure on an individual pretty tough. I’d use your ALS specialist recommendation. I find the cost of ALS drugs unconscionable. -
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 that give you the answers. It’s hard.
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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 concerned with needing to catch up on sleep I will take two Benadryl or the sleeping pill. I try to mix it up.
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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.
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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.
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For us it will be having family here for dinner. Kids and grandkids. That itself is enough.
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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.
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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.
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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.
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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 months wait. Frankly , my symptoms really didn’t change during my time to get diagnosis. The slow progression I think causes the drs who are not really specialists to delay committing to diagnosis. Pretty sure I’ve had this over 7 years. I go back to see Dr Vu once a year but go to certified ALS clinic here locally every 4 months. I did two drug trials with Dr Vu at USF.
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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 anyone’s symptoms and prognosis by us in forums is very bad as even some experts struggle with it.
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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.
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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.
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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.
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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 hold ground. I don’t do anything different but try to eat more and supplement in between regular meals with Ensure. I also eat cookies and ice cream for the calories. With my chewing issues it is just too slow to solely eat enough quality primary foods.
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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.