Fearing ALS

[AJG]

I can relate to the burning minus it's in my arms. This is new for me it mainly happens at night. No burning in legs just the random numbness one leg at a time. Sitting around will also cause a lot of issues. I was affraid to walk thinking I would fall but I'm still standing. I self test daily. Switching medications will cause crazy side effects as well. I've been there. High anxiety makes the symptoms so much worse. At the beginning of my symptoms my legs were crawling with twitches, very heavy. It did get better but not to the stage I would like to be in right now.

[daytona1]

This is what i have AJG, a crawling and twitching sensation in legs. Im now getting what i can only describe as a "weird" feeling in my tongue and thats scaring the life out of me more than the twitches etc right now. Sort of like its swollen but its not when i look at it. Have any of you had thisor something similar?

[Seymour]

I can relate to the burning minus it's in my arms. This is new for me it mainly happens at night. No burning in legs just the random numbness one leg at a time. Sitting around will also cause a lot of issues. I was affraid to walk thinking I would fall but I'm still standing. I self test daily. Switching medications will cause crazy side effects as well. I've been there. High anxiety makes the symptoms so much worse. At the beginning of my symptoms my legs were crawling with twitches, very heavy. It did get better but not to the stage I would like to be in right now.

I just never experienced feelings like this from anxiety.

I’ve been twitching in my legs, back, face, arms, just everywhere.

When I walk for a while my legs almost start to shake. It’s like I can feel the weakness in my legs, groin and buttocks. When it was just the twitches I told myself hey you don’t have weakness but now I do have weakness.

I’ve been in a constant state of extreme anxiety for three months. Eating poorly, forgetting to drink. I’m convinced I have ALS now or progressive MS. What else could this be?

[Seymour]

Sorry I don’t want to hijack your thread I just wanna share.

[Fishmanpa]

Sorry I don’t want to hijack your thread I just wanna share.

Sharing and reassurance seeking are two different things

For all who have this fear, I suggest you read THIS as many times as you need to.

Positive thoughts

[AJG]

Initially I had the crawling sensation along with the twitches in my legs. I had cramps, spasms you name it. I experienced one tongue twitch and prickly sensations. Those are gone now. My face is not back to normal. I had a massive left side facial twitch once. I still have a bit of a tremor in the area when I smile. It is very scary. I completely understand the fear. For me I am petrified as I had unexplained muscle enzyme breakdown which of course after reading google can be linked to muscular dystrophy but also to the ssris that I started taking. I had jelly legs initially. It was hard to walk and energy was very low. Few weeks ago I wore wedge shoes and the back of my legs felt very weak. I had to go home. Then there are days I feel like I need to push through and I'm okay. I seek reassurance daily from people around me but I know that at the end I'll need to go and do all these test to get answers no matter what it is. I wonder is anyone experiencing any burning sensations? It almost feels like a sunburn. I stay away from reading about ALS because I know I will not be able to function if I do. At the beginning I watched some videos and read some stuff online. I can't do that to myself anymore.

[Seymour]

I experience the sunburn feeling in my legs.

[Hijikata]

Lol you are all saying you are experiencing sensory sensations which do not happen in ALS. No numbness, no tingling, no “sunburn” feeling, pain and cramps come very late in the disease. It’s not an “oh I feel weak”, it’s a, “why can’t I lift my arm above my head”. I only share this because I have also been consumed with this fear and have been to two neurologists who did the reflex checks, the strength tests and the body examinations and who have both said that it looks like I have no problem. The second gave me a referral to a University Hospital for an EMG but said he didn’t recommend it, only if I couldn’t stop my worrying. He also said that the first thing most people will notice is the muscle wasting of their hand, and especially thumb muscles, which then leads to the weakness of that hand. Both I told about my twitches and both didn’t really seem to care about them all that much. The strength tests seem to be the most important, especially the hand grip tests and tests against resistance. What you are all expressing are classic anxiety symptoms made worse by hypersensitivity and laser sharp focus on the symptoms - something I am all to familiar with myself.

My doxtor also also said you have to remember that als is an incredibly rare disease. For instance, Tokyo university medical hospital, one of the biggest in japan, only saw 160 als patients last year (in a country of 120 million people - including a lot of old people) and more importantly o it administered about 200 emg tests for the whole year. Just think about how minimal those numbers are in a country with such a large population. Easier said than done but you just gotta take a step back and try to chill out and not focus on the symptoms because I can guarantee you that you are making them worse

[tryingtosurvive1]

Hey, at the risk of totally freaking you out . . . I have something called Charcot Marie Tooth, it is a familial periphereal neuropathy that progresses SLOWLY across a NORMAL lifetime. You wouldn't happen to have high arches or weak ankles, or a parent with same? It can come with scoliosis. In my case the sensory issues came on kind of strong, but I now take gabapentin for it and can cope okay.

However this is rare; I wonder if you are having biomechanical issues from scoliosis itself--like a pinched nerve. It can be no joke as I'm sure you know. Have you posted on any boards about that?

I think it might be possible that what you are experiencing is due to more than anxiety but is not ALS. Other posters are also right that ALS is not sensory.

Your EMG/NCV will probably tell whether you have something going on or this is all just anxiety. If scoliosis is causing some issue (like pinched nerves) I think the EMG/NCV will show that too. Occam's razor says this is somehow connected to your existing bodily issues, not ALS/MS. (Also even if there is a non-anxiety component, some of the symptoms may be anxiety only. You list a lot.)

[tryingtosurvive1]

Benign Fasciculation Syndrome for you. (I only suggest that the other poster could have a non-anxiety related issue bc of the scoliosis.)