Husband’s slow progression. What to do next? Scared.

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Njohn

New member
Joined
Jan 16, 2023
Messages
2
Reason
CALS
Diagnosis
01/2022
Country
US
State
NV
City
Las Vegas
Hello all. First off, reading many of these posts have brought me to tears and I just wanted to say how much I admire the bravery and positivity that you all share.

My husband, the love of my life, is 40 years old. About 6 years ago, his left foot started cramping up when he would be sitting or lying down. He would walk it off but then started noticing at the gym that he couldn’t run anymore. He has walked with a limp since that and it has affected his hip due to the over-compensation of putting more weight on one side. His left leg is very skinny due to the atrophy. In the past six years, it has slowly progressed. His right foot is starting to show signs of foot drop. He twitches in his biceps. We have been to the Mayo Clinic several times and he has had many EMGs, MRIs, etc. His recent results showed there’s some “activity” and muscle deterioration in his abdomen. We don’t know where to begin. What to think. We are so, so scared. I’m so angry. I don’t know where to turn or who to even talk to. I have so many questions. Are medications worth it? Which ones? Has anyone else experienced this slow progression and what should he expect? Any supplement or exercise recommendations? We haven’t even had the chance to have a family … I just want to support him in the best way I can. Please, if there’s any advice, suggestions, ideas, anything, I would greatly appreciate it. I hope and wish for the best for everyone on here and their loved ones.
 
He was definitively diagnosed with ALS? 3 years ago? That is what your profile says. Why do they keep doing emgs if so? Is he taking any meds now? Before we answer can you clarify?
 
At first they kept saying PMA, but approximately three years ago is when the neurologist said it is ALS. He has had more emgs because he sees more than one neurologist (we were pretty desperate at one point and sought out other opinions too) and they wanted to see if there was activity inside and not just changes that were visible. He is currently not on medications but on our last Mayo Clinic visit, he was prescribed Riluzole. He has not yet started it.
 
It sounds like a confusing journey.
why is he hesitating on riluzole? It is just a pill and usually affordable with insurance. Most people tolerate ok. If he doesn’t then he can stop it. Since he has slow progression it will give more time. The old 2-3 months was based on people who survived 2-3 years from onset which clearly is not his progression. The other r drugs - radicava and reyvrio -also slow by percentage. They are a little more challenging due to expense but I would surely look into them and try them if obtainable. It is my opinion that things work better in those of us who are slow progressing because the disease is less aggressive in us.

i would do the prescription meds first then I might speak to the neurologist about methylcobalamin injections , theracurmin and acetyl l carnitine all of which have some research backing them up though theracurmin research is more general neurodegenerative

exercise is still debated. Range of motion is important Otherwise know you cannot strengthen als weakened muscles so proceed with caution. some cardio is generally considered good. If you do not recover fully ( could do it over again) in an hour it is too much. Resistance training is tricky and I think especially so if you are lower motor dominant as he is. I would ask the pt at the als clinic to help if he wants that

what to expect? We are all different but ultra slow progression over 6 years is encouraging.

he should be genetically tested. All pals should but more important when young
 
That sounds similar to my progression. I started out with fasciculations and cramps in my left foot. I ignored it for six months. I noticed I was no longer able to run as far or as fast. Then I found it hard to run even two miles. Then it became hard to walk even two miles. By that time I had gone to my local neurologist because the fasciculations had spread to both legs. He saw some clinical signs so I was sent to Mayo. After being diagnosed there I went to Johns Hopkins. I couldn’t tolerate Riluzole but I had been taking graduate courses in micro and macro nutrition, so I started a supplement regimen.

They used to think Riluzole needed to be started early, but Mayo has changed their position on this.

My first symptom was Summer 2014. I’m still walking but just around the condo. Walking more than 100 yards is no longer safe or comfortable.
 
Bedlack’s latest Theracumin results showed no progression slowing, so perhaps that’s one to rule out. Unless it works well in combination with something else.
 
I'm not giving up Theracumin because it helps with inflammation. Some of us are in quite a bit of pain and I think Theracumin is as good as Advil with fewer side effects. Just MHO.
 
I was diagnosed at Mayo 6-22.

what can you do? Physical therapy as often as your doctor will prescribe. Also I hired a yoga instructor to visit twice a week. Does it help only God knows? Ever day I wonder if the next shoe will drop!
 
First and foremost, you are blessed with slow Progression. You have seen that Dx is not easy. There are many mimics. Dx is a process of elimination. If possible, seek out a 3rd opinion at a different ALS Clinic. This is beyond the scope of a ' regular' neurologist.
There is a biomarker often tracked in clinical trials but not yet used in common practice, called NfL. Its available at Labcorp now, so insurance should pay. Ask for it.
Info on exercise is evolving. You should do moderate exercise, but not pro-athletic level stuff. A home gym with weights, you dont need a commercial setup.
 
I read your post. Anyone who reports slow progression inspires me. Thank you. Keep going!

I got dx mid-Sept. '22. I did not want to believe the local doc but he got the dx in 6 weeks and sent me to Columbia Presbyterian. There the dx was confirmed on 11/7/22. That brought me to my knees.

I have fasciculations in my chest, biceps, triceps, forearms, hands, thighs and calves. I did not notice them in September but now i see them in the mirror every morning. I feel strong except that I lose my wind upon moderate exercise. I have a slur in my speech but can control it merely by speaking slowly. That is it for now.

I too, wake up every morning and wonder if something is going to change but so far I am lucky.
I have been on Nuedexta, Rilizule, Tudca, thermo... I take intramuscular B12 injections (didn't think I could to that to myself but it does not hurt) and last week I went back to work. Next week I start Relivrio.

I spent November, December and half of January hosting my own pity party . It does not help and kills the spirit of those who love us.

I am glad that everyone here stays positive or at least cautiously optimistic.

I hope we are all corresponding with each other years from now.
 
Slow progression is something to hope for and your husband already has it. I hope it continues.
i hope your husband takes the meds. I take Nuedexta, Riluzole, Tudca, Therma, B12 intramuscular injections and next week I start Relivrio. I got symptoms in June/July (slurred speech, and cramps/fasciculations by July. I went to a local neuro in August and had a dx by mid September. Confirmed dx at Columbia Presbyterian 11/7/22.

While I am sorry that your husband has had these symptoms for 6 years, I hope that 6 years from now I can say the same.

My wife is my champion and I could not do this without her.
 
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