Feeling the possibility of ALS

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Still waiting on a neurologist appointment. Having trouble setting one up. Meanwhile my face is getting super weak and nearly numb feeling. Cheeks are super soft and neck feels like jello. No strength in face and feels so weird. Arms n legs still sore. I can still drive fine. The inside of my hands burn at times but my driving isn’t affected. My face losing strength and feeling is really irritating.
Sounds very odd Sam. I've not heard of any ALS onset that happens like this. I hope you get answers and relief soon.

I will note that you reported having trouble gripping the steering wheel. If that is true, you are not fine to drive.
The griping is not due to holding the wheel fine. It is bcuz it causes my hands to sting in the palms. I’ve had stinging in hands for a few weeks. Finally got an appointment scheduled for two weeks from now. My face and neck feel numb and I can notice some atrophy in the cheeks.
Great. Please use the two weeks preparing for your appointment and spending time with your sister.

write down all your concerns and questions. It is easy to forget something if you don’t because there will be a lot of back and forth between you and the neuro. Read here for tips preparing Important - READ BEFORE POSTING! Getting a diagnosis
Honestly, you need to calm down, go to your appointment and believe the results.
We can't do a single thing more in the lead up.
All the best.
Went to neurologist appointment. She did a bunch of different tests on me. Didn’t get any real answers from her. MRI on brain came back no acute findings. MRI on spine said mild degenerative disc disease c 7 to t 1 and multilevel disc desiccation. Neurologist didn’t say much but didn’t seem to think something major was wrong. She did mention my reflexes were strong and hyper. I have the EMG in 3 weeks. Still just super sore and stiff all over.
Well that sounds like good news. You should be able to read her note online within a couple of days. It is required they makes records available in a timely manner so most places use their portals. I would plan to go back to my pcp after the emg assuming it clears you. Ask about seeing a rheumatologist
That's positive indeed. Let us know once you have the EMG results, but it sure doesn't sound neurological, more systemic maybe.
I have to comment on all the anxiety I'm reading here from guests worried they have ALS. The Read Before Posting is critical to fully understanding the risk of this disease. Personally, I've been at this a very long time. In all that experience, the last illness anyone should ever consider, given whatever symptoms they are experiencing, is ALS. This has to be stressed in gigantic capital letters to everyone worried they might have ALS. ALS is diagnosed by exception. It actually is the last diagnosis considered when all others are excluded, for which there is perhaps another known cause. There is no cure for ALS. You don't want ALS to be the diagnosis. You need to do everything you can to make sure you are not being inadvertently diagnosed with ALS, before finally accepting that, yes, you have ALS.

I will tell you our personal story, to calm you down. Beginning around 2005, my wife noticed she occasionally tripped more often than usual, sometimes falling. She also was going to the gym at the time with her girlfriends. She noticed all her friends were getting stronger, and she was not. About a year later, she tripped and broke her foot. Her leg muscles atrophied in the cast, as usually happens, but then during physical therapy, she was not getting stronger again. She had no pain. She had no twitchings. She had nothing but an inability to gain strength, and it was affecting her gait. This went on for two years. Finally, she had had enough wondering what was wrong with her.

I have some medical experience, so I went through the standard accepted diagnostic procedures based on symptoms. I forget exactly what I discovered, but basically I told her, "It is this ... or it is this ... or it is, you don't want to know." Turns out it was "you don't want to know," but she had to go to a neurologist to find out officially. He plugged her into his nerve testing machine, and then said you have to go to this other specialist, because he didn't want to make a diagnosis before getting a second opinion. She went to the specialist he recommended, and he repeated all the nerve tests, and ... this is critical to understand, he did an extensive battery of other medical testing to rule out everything else. Only then did the default conclusion come in that the best they could say is that she has ALS.

And we were upset, because she was relatively young at the time, and we had two young teenage kids, and the specialist said ALS progression to death is usually 3 to 7 years; and among other absurdities, there was nothing anyone could do. And that was that. We went home, and I told my upset wife, "Look, you've already been at this two years. You are not going anywhere fast, that I can see. So, we just get on with life however best we can." And here she is, 15 years later, still declining at the speed of continental drift.

I realize she is the exception to the general rule; only about 5% of ALS victims go this long, and I think the reasonable record is 25 years. But, her life expectancy was 5 years, 10 years ago. There is nothing to panic about, because there is nothing you can do. So, you know what, just going about your life is the only reasonable solution to an incurable disease. The bottom line is that life itself is incurable. Enjoy what you got, even if you unfortunately find out it's a little bit less than everyone else, and a whole lot more difficult, and progressively, worser by the day.

Please, read the Read Before Posting, and get the quack to rule out everything else competently, before casually sentencing yourself to death by ALS. If in the end, it is, then it is. In the meantime, you do not need the worry and anxiety. There are way more dangerous risks out there that actually might just kill you, tomorrow or next week, than worrying if you have ALS. Here's to hoping you don't.
Glad to hear your wife is doing well all these years later. My sister was diagnosed in March and is going super fast. She is already in the “final stages.” So based on this and my symptoms, I was concerned. My EMG got rescheduled today for next week. Thanks for the above rheumatologist suggestion. After my EMG, I hope they will have more answers. Something is amiss for sure.
Sam please concentrate on looking after your sister.
I had my EMG and NCS. Didn’t tell me much but said I have polyneuropathy. The burning is constant in shins and thighs. Not fun but doesn’t appear I have ALS. Prayers to everyone dealing with this awful disease.
Thanks for letting us know. Hope they can mitigate your symptoms.

Best to you and your sister
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