Worried about ALS

[Lorelle09]

I have had facial numbness started on left side now both sides off and on since July 2022. In August I went to the ER and an mri of the brain was done. Doc said normal but I’m not so sure he read it correctly. Since then the numbness is still there everyday but it does come and go although they’re 50-80% of the time. Also the front of my mouth and front of tongue is numb. I also get burning mouth. In the last year I noticed that my biceps would spasm. They randomly get stuff for about 30 seconds to a minute then relax. This would happen randomly for weeks then stop. For the last two weeks I have had leg pain in my calves and thighs. My biceps especially right side has had spasticity all day everyday. Upper arms feel tight. Feet and hands feel tingly. No weakness but legs and arms do feel heavy. Also been having random twitching on legs, shoulders, butt, arms, and abdomen. When I touch the twitches it stops. My biceps and upper arms along with highs are mildly painful. I take pain meds so I can fall asleep. When I wake the pain and numbness is gone but within 30 min to an hour it is back and there all day.

I am worried. I have another brain and face mri in two weeks no contrast. I live on the big island of Hawaii no neurologist so I have to fly to Oahu and even there it takes months to get an appt. When I last spoke to my neurologist (first appt) I only had the numbness since then the muscle tightness and pain and tingling started. I tried to call and get another appt to mention the new symptoms but can’t get in until end of April.

Can someone please give me advice on if you think I may have als or what I should ask doctor at my next appt.

I appreciate the help.

 

[ShiftKicker]

Hello-

Please make sure to read here: Read Before Posting

I think you should find what you read there reassuring, as facial numbness, burning, tingling is not at all something associated with ALS. You state spasticity- is this something officially noted by a neurologist? Muscle spasms and spasticity are not necessarily the same thing.

With regards to what to ask the doctor- ask them what next steps are. Ask them what differentials they may be looking at. With your reported symptoms, it's highly unlikely they're even considering ALS- it's just not the pattern that would make a neurologist concerned about it.

Please take care

 

[Lorelle09]

I say spasticity because my muscles get stiff then relax. It can cause mild to moderate pain. Small twitching hardly noticeable. The muscle tightness happened after my appointment so I have not spoken to neurologist about it yet. My arms ache and feel heavy due to the muscle contractions. My tongue twitches when I stick it out but not when resting in my mouth. I just notice my muscles contracting and staying hard for a minute then relaxing it happens in my legs, arms, abdomen, back. It’s just strange. I know numbness and tingling is not usually a sign of als but I have read online of people who started out with numbness or tingling/needles as a first symptom. Also extreme fatigue on some days, moody, depressed, and anxious.

I appreciate your response. I’m just worried as these symptoms are just strange.

 

[Bestfriends14]

You're not describing spasticity or ALS in the slightest.

Hope you find your answer soon. Keep working with your docs. Good luck.

 

[Lorelle09]

Sorry I feel for everyone in this forum. I am just worried and looking for some help. I was wrong by saying spasticity. What I mean is I have been having constant cramps in my thighs and mostly my biceps for over two weeks like 50 times in a day. Sometimes it’s painless and I can tell because they are rock hard for a minute and other times I can tell because they are achy and painful. It’s like it’s constantly contracting. My legs feel heavy and weak making it hard to walk. I had pain in my back muscle for two weeks before the leg and arm muscle pain started. The twitching is also new I never get twitches but I have been having them many times daily. My arms feel stiff my legs feel stiff. It is just strange symptoms that has never happened to me and now it’s been going for over two weeks. Fatigue is horrible. I have read the cramps in als is an early symptom and sometimes it is painless and other times there is pain. I don’t have weakness but I have like a tiredness or not being able to walk as much as I used to. Not that I walk much to begin with. It’s the constant cramps, leg heaviness that is my biggest concern.

Also if this is early als would these symptoms come and go or will they just persist?

 

[lgelb]

Persist, but I really don't think that's what they are.

I would video your sleep and send anything weird to your PCP. Also double-check that your bed, mattress, chair, couch, etc. are still supporting you like they used to.

 

[Lorelle09]

Thank you so much I really appreciate your reply.

 

[Lorelle09]

After reading many other posts I realize that what has been going on in my upper arms for the past week are called spasms. I have been having involuntary muscle contractions that come on suddenly contract for a minute then stop. This has been happening many many times throughout the day in my biceps mostly and triceps. Some pain but not so bad anymore mostly painless spasms. I notice because my arms start feeling tight so I touch my arms bicep area and it is hard like a rock then it starts releasing.

I take bloods every three months so I know all my levels are fine such as potassium and calcium etc.

I just need help with this strange symptom which first started with horrible leg muscle pains which has moved to my arms. I should note that I have had this arm pain a couple months ago but now it seems to be stronger and lasting for longer as in the last it lasted a few days only.

 

[Bestfriends14]

Please take your concerns to your pcp. This is not a general health forum. It is one for ALS, and you do not exhibit any ALS issues.

I sincerely wish you luck. Take good care