I have ALS and would love to reach out to others with the disease.

Sorry to hear of your difficulties.

I have a 3 limb EMG scheduled for 2/11 to see if I have ALS. I have significant fasciculations and the neurologist has ruled out everything but ALS and BFS. I may be joining you down this path.

I hope that you find ways to cope with your symptoms and wish you well.

Well I can tell you a lot. One of which is don't wait to do all the fun things you want to do in life. Unfortunately it doesn't get easier. I do have to come up with new ways to do things. You will find your close friends and relatives will be more important than ever before. It is wonderful to have a good support group. I would like to find others with ALS with varying stages. Best of luck to you and
hope to hear from you again.

I have tons of questions, but I don't want to jinx myself before I even get the diagnosis next week. Having said that , did you start with fasciculations and how long was it before other symptoms started?

I appreciate your comment regarding a good support group. If I get bad news next week, I'll have to make some tough decisions. I have a house in Delaware that we've lived in for over 30 years and have tons of friends and family in the area which would be a great resource, particularly for my wife. The problem is that it is a 2 story colonial which would be difficult for anyone with mobility issues. My other house is in Hilton Head with a first floor master bedroom and a wide open floor plan which would be much more conducive for getting around, but with much less support available. I would have to choose one or if necessary get another place in Delaware that would be on one floor and still be near all of the support. I guess I'll worry about that after next week if I have to.

Thanks for your reply.

Of course a diagnosis is important first, yes I call them twitches probably before
motor skills, and both homes sound desirable. Some homes can be retrofitted to meet your needs. Elevators may be an option. Maybe keep both for a while. While you still can, use Hilton Head as a nice vacation spot. Make it an Air BNB
if money is an option. I know I don't sound like the typical real estate agent of 35 years but I wasn't a typical one. I believe you have plenty of time to make up your mind no matter the out comb. Best wishes...

How long ago were you diagnosed and how old are you if you don't mind me asking. I'm 68.

My DE house is not configured in a way that lends itself to an elevator installation or I wouldn't hesitate to do it. Maybe installing an electric stairs would be a viable alternative. That thought just occurred to me.

Unfortunately the plantation that I live in in SC doesn't permit short term rentals (less than 6 months) so that is not an option.

Thanks for your thoughts.

I have had twitches for the past year or so but no other concerning symptoms. I am 54. How long were you twitching before you developed other things that led to your diagnosis?

I am not really sure as I might not have realized it until my left hand got weak.
Cant hurt to check with doc.

I was diagnosed in Aug 2024, symptoms started in May of 24. Have you found out any news on what it might be? I would not want to wish ALS on anyone. I am 78 yo.

Fortunately, I was able to get the news that it was not ALS on 2/14. I still have all of the fasciculations but apparently it is BFS since the 4 limb EMG showed no ALS indications.

Good luck going forward. Depending on the root cause of your ALS it looks like they are finally developing some promising drugs.

did you notice any weakness in your hands before you were diagnosed? You mention your symptons started about 3 months before you were diagnosed. Were the twitches first? Were they accompanied by any weakness? I live in Chicago and am considering a trip to Mayo as the wait to get in to see a dr. is sooo long in my area. I'm worried sick.