en-US Your moderated forum and support group Fri, 11 Jul 2025 16:30:46 +0000 Fri, 11 Jul 2025 16:30:46 +0000 ALS Support Community https://www.alsforums.com/community/?utm_source=rss&utm_medium=rss Fri, 11 Jul 2025 14:52:25 +0000 https://www.alsforums.com/community/threads/question-about-speech-problems.55680/?utm_source=rss&utm_medium=rss 55680 invalid@example.com (JTF429) JTF429 Hi,

Thank you all for taking the time to answer questions and offer advice. I am a 56 year old male. Retired firefighter with complex PTSd, high anxiety, and hyper vigilance problems.

I recently saw my PCP for possible RLS problems. Like an idiot I look to Dr Google 1st. Why I didn't learn my lesson last time I don't know. Anyway I did read through the posts and look at previous ones and became confused a little.

Symptoms and they have been ongoing at least a year. Miss...

Read more]]> 1 Fri, 11 Jul 2025 14:32:51 +0000 https://www.alsforums.com/community/threads/progression-after-riluzole.55675/?utm_source=rss&utm_medium=rss 55675 invalid@example.com (Francesco) Francesco Good morning,
I wanted to ask if any of you have noticed an acceleration of the progression rather than a slowdown while taking riluzole.
My father was diagnosed with ALS/flail arm syndrome in September 2024 after two years or more of problems with his right arm.
He started taking riluzole in November, and in January 2025, he began losing strength in his neck muscles and now in his other arm.
No bulbar symptoms.
I would now like to add the following supplements to your "treatment":
Curcumin...

Read more]]> 3 Fri, 11 Jul 2025 11:24:56 +0000 https://www.alsforums.com/community/threads/how-to-tell-our-8-year-old-daughter.55679/?utm_source=rss&utm_medium=rss 55679 invalid@example.com (dav76) dav76 Hi,
I was recently diagnosed with ALS. You can read my CBALS post here.
My wife has known since the beginning, but we decided not to burden our 8-year-old daughter with this until necessary.
She has now started asking questions about what is wrong with my leg, why I can no longer rock climb, or why I won't buy new rollerblades to practice with her.
In addition, some parents of the kids at her school are also aware of my disease, and there is a non-negligible risk that she may hear...

Read more]]> 2 Thu, 10 Jul 2025 23:51:40 +0000 https://www.alsforums.com/community/threads/symptoms-ongoing-for-3-weeks.55656/?utm_source=rss&utm_medium=rss 55656 invalid@example.com (bleegm) bleegm Hey y'all, I'm a 26M who's been dealing with fasciculations for almost a year now. I've also been experiencing atrophy but its not specific to one area. My entire body is atrophied from shoulders, to arms, to hands, to legs, to thighs, etc. So obviously its not extremely noticeable atrophy and I mostly contribute that to may lack of working out (haven't been to the gym in over a year) and also chronic stress. I've been dealing with a variety of health issues for a year and finally might have...

Read more]]> 6 Thu, 10 Jul 2025 21:37:35 +0000 https://www.alsforums.com/community/threads/im-a-pt-worried-i-might-have-als-looking-for-reassurance-of-very-early-symptoms.55677/?utm_source=rss&utm_medium=rss 55677 invalid@example.com (Robbed4Leif) Robbed4Leif PT here, 37M, it's so interesting helping people with their own neurologic issues (including some patients with ALS) but now at a loss with my symptoms and how I'm feeling.

On Sat, June 28th (to my knowledge I have no significant issues prior to this) I went on a hike with my family - decent elevation change up high. Ot was hot and difficult, but felt fine during. After I felt much more tired than usual, and that evening experienced a "heaviness" in my L leg, tightness, cramping, and...

Read more]]> 1 Thu, 10 Jul 2025 18:45:55 +0000 https://www.alsforums.com/community/threads/us-hospitals-at-closure-risk.55674/?utm_source=rss&utm_medium=rss 55674 invalid@example.com (lgelb) lgelb Based on recent federal legislation, a number of hospitals at risk just got riskier. Because most are in rural areas, their closure might necessitate long drives for care.

I have attached the list. If you are thinking of moving somewhere, or settling in for the duration, you might want to take a look.]]> 1 Thu, 10 Jul 2025 18:42:19 +0000 https://www.alsforums.com/community/threads/unexpected-diagnosis.55662/?utm_source=rss&utm_medium=rss 55662 invalid@example.com (Mumsie) Mumsie Hi thanks for accepting me on this forum.
I hope I am posting in the right place
I live in Australia and I am a mum of 5 lovely children and a registered nurse and emergency ambulance officer by profession.

My story is one of suprise and shock.

Over last year or so I was having increasing difficulty moving my right foot and thought it was arthritis and a possible bunion developing. As it was beginning to affect walking due to severe cramping, I went to an orthopaedic specialist who...

Read more]]> 20 Thu, 10 Jul 2025 00:40:04 +0000 https://www.alsforums.com/community/threads/nuedexta.55671/?utm_source=rss&utm_medium=rss 55671 invalid@example.com (JohnnyMags) JohnnyMags Our ALS doctor said it's if no help with depression at all ... That is a direct quote then he go's on about the clinic having a form to see if you qualify based on certain symptoms. I'm sure I read on here that Nuedexta helps with depression. Which is correct?]]> 2 Wed, 09 Jul 2025 22:51:24 +0000 https://www.alsforums.com/community/threads/kinder-teacher-needing-answers-before-new-school-year.55673/?utm_source=rss&utm_medium=rss 55673 invalid@example.com (Juliekist) Juliekist I have read the "read before posting", thank you for that very thorough information. With that I am a 56 year old kindergarten teacher who was up until the first week in June very active, living a full life that included a morning run of 2-2.5 miles every day. I now force myself to walk a mile and it's hard. I am single and on my own, am not sure how to proceed and am very frightened.

Around the first week of June I noticed weakness in both of my legs, pretty much over night. Not to the...

Read more]]> 4 Wed, 09 Jul 2025 19:47:40 +0000 https://www.alsforums.com/community/threads/nfl-question.55349/?utm_source=rss&utm_medium=rss 55349 invalid@example.com (j100f) j100f (prev threads: here and here)

Hi everyone,

I’ve been dealing with symptoms of muscle weakness, fatigue, tremors and a slight loss of muscle bulk in my arms and legs for a year and a half now, my last emg showed decreased recruitment of large duration motor unit potentials right tibialis anterior and gastrocnemius. I saw my neurologist yesterday and she said she noticed I'm weaker than I was on our last visit, she wants to do a single fiber emg in July to see what's going...

Read more]]> 5 Wed, 09 Jul 2025 19:34:27 +0000 https://www.alsforums.com/community/threads/back-after-18-years.55638/?utm_source=rss&utm_medium=rss 55638 invalid@example.com (ktroopa) ktroopa Hi all,

Well, after 18 years, I'm back! I posted back in 2007 about neck, leg symptoms (pain, perceived weakness), and body wide twitching. Clear EMG. Eventually, that led me to have an ACDF surgery in my neck at C3/C4 where I had spinal cord compression. All symptoms resolved. My prior post here: Concerned about ALS (long!)

Fast forward to late April, I was in India where I had food poisoning, followed by 2 rabies shots due the potential of getting scratched by a bat. Upon returning...

Read more]]> 7 Wed, 09 Jul 2025 19:03:26 +0000 https://www.alsforums.com/community/threads/saw-this-in-shower-now-worried-for-a-week.55670/?utm_source=rss&utm_medium=rss 55670 invalid@example.com (dweaver3) dweaver3 Noticed what looks like and feels loke calf atrophy. Have had left knee pain when on legs a long time for years but never really noticed calves. Now suddenly worried I surely have als.]]> 4 Wed, 09 Jul 2025 12:51:47 +0000 https://www.alsforums.com/community/threads/is-it-really-myopathy.55660/?utm_source=rss&utm_medium=rss 55660 invalid@example.com (AngyFox) AngyFox Greetings!
I have read up about the pinned threads and how an EMG of a classic case of ALS would look like, but I just want to at least have some form of assurance that it is not ALS, just a bit of paranoia I guess, I just want to know if these results would be pointing towards ALS]]> 6 Wed, 09 Jul 2025 01:32:10 +0000 https://www.alsforums.com/community/threads/so-i-am-anxious-too.55549/?utm_source=rss&utm_medium=rss 55549 invalid@example.com (cissnei) cissnei My symptoms are:

Whole-body twitches that comes and goes (not that worrying about this unless it concentrates to where weakness is)

Left side is a lot more tremor-y under load (such as when I lift a 5kg dumbbell from relaxed arm to in front of me)

Unilateral self-tested Hoffman sign on right (doctor did not test that in my visit and said she don't care about that, Hoffman is not really that important in her opinion)

Left pinky toe a lot more tremor-y than right and has near clinical...

Read more]]> 9 Wed, 09 Jul 2025 01:25:22 +0000 https://www.alsforums.com/community/threads/nursing-home.55666/?utm_source=rss&utm_medium=rss 55666 invalid@example.com (Finndoodle) Finndoodle My Pals was admitted to the hospital last Monday with colitis. He also has Crohn’s along with ALS. We are a year into this nightmare and he can no longer use either hand nor arms, no more speech, no use of right leg and little use of his left. We can no longer get him on/off toilet and uses a urinal to urinate. He is wearing depends at the hospital and has severe diarrhea due to his Crohn’s flareup.

We have made the family decision that he will be transferred to a nursing facility to give...

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