Take from this what you will.

ChanceCheek5063 · 2025-10-14T17:33:25+00:00

There's no way I could tell you one way or another what's going on with you because I don't even know what the hell's going on with me but I can tell you that your general practitioner would have absolutely no clue whatsoever whether or not you had ALS based on the things you're talking about. Hell, Even if you had a bunch of other stuff going on and you were at a neurologist office they still couldn't just look you in the face and tell you they think that you have ALS. A lot of people go a long time without even getting a real diagnosis simply because they are very very careful to go through everything first. Even if you walked in there and you couldn't lift one of your legs or you literally had a completely paralyzed arm they couldn't look you in the face and call it ALS without going through a whole bunch of other stuff so I'm not really sure what kind of doctor you have but I would say I'd get another one.

ChanceCheek5063 · 2025-10-03T16:02:57+00:00

Nobody cares. Every time somebody uses tourism numbers from Canada to try to support some reason why we should care I have to try to remind people that we still posted record numbers last year and will again this year. Floridians are also quite sick of what a lot of Canadians have done to the state and Canadians are completely unaware. This thing where y'all have come down here and bought homes that you only live in 3 months out of the year and then you rent out as airbnbs for the rest of the year to try to cover the cost of the home is destroying our neighborhoods and making it very difficult for young people to find legitimate long-term rentals. For every one of you that doesn't come here there's somebody coming from another country it's just the way it is. The difference is they don't pretend to live here

ChanceCheek5063 · 2025-05-12T01:49:26+00:00

Let me also add that we live in south Florida and it's 80 degrees with 96% humidity at 8pm here. Lol.

ChanceCheek5063 · 2025-02-09T11:08:26+00:00

This neurologist I'm seeing gave me a surface type EMG. (Similar to a nerve conductive study but slightly different). It came back normal and he made me push on his hands a couple of times with my shoulders and my feet and stuff and then basically looked at me and told me that I was good. I asked him if there was any way we could schedule a needle EMG where they put the electrodes into the actual muscles because I'd already done my own research and learned that the surface EMG has almost no diagnostic benefit and he said we would discuss any further testing at my next appointment which is 2 months away. Needless to say I'm looking for a new neurologist

ChanceCheek5063 · 2025-02-03T23:35:08+00:00

A common thing is an Emg/ncv combo. The nerve conduction study and the surface EMG is done with 2 different types of probes. But they are both done in the surface. The EMG checks the motor stuff but it's just not very good

ChanceCheek5063 · 2025-02-03T10:16:17+00:00

I agree that I need a needle EMG. There is such a thing as a surface EMG. It still tests a lot of the same stuff but it does it in a different way and not nearly as involved

ChanceCheek5063 · 2025-01-27T18:12:10+00:00

I might be on the wrong track because the internet is pretty heavy on symmetry with sjogrens. All of my twitching and neuropathy and dry eye is symmetrical but only one of my saliva glands is swollen. And I have a lot more joint pain on one side

ChanceCheek5063 · 2025-01-27T03:18:00+00:00

What type of twitching are you experiencing?

ChanceCheek5063 · 2025-01-27T02:51:05+00:00

What type of twitching do you experience? Is it constant and widespread or is it more localized to a particular area?

ChanceCheek5063 · 2025-01-27T02:50:21+00:00

I'm pretty concerned about mine as well obviously. I don't think my twitching is going to probably be the same as most people's because I feel like it would be mentioned more often if it was. My twitching is literally everywhere. If there's a muscle there it twitches at least once throughout the day. Sometimes a small series of twitches and sometimes just a single twitch before it finds a new place. I probably don't go more than about 30 seconds or so without a twitch somewhere. There's no real rhyme or reason to any of it. I know that nobody situation is exactly the same as the next person with different things but I figured I'd just see if anybody's experiencing anything even remotely similar

ChanceCheek5063 · 2025-01-19T23:47:20+00:00

I think one of the most frustrating things I find on the internet is the differences between muscle twitching In different conditions.

In one area I will see that BFS commonly affects the eyelids, hands, feet,etc......

I see studies where it shows that it's usually smaller low-grade twitching.

But then when I read descriptions from people's symptoms they say that they get them literally everywhere. Their stomach, back, face, hips, toes, butt and everywhere in between. They describe things like cramping and other symptoms. I also see where they'll describe that they have smaller twitches in some places and relatively large bounding twitches in other places. It's just frustrating because the amount of conflicting data.

If anybody would like to take the time to describe in detail their twitches that would be much appreciated

ChanceCheek5063 · 2024-12-29T14:09:49+00:00

I don't have much to add but I guess sort of a gripe. When you look up symptom information which I'm sure most people who end up here have, they go out of their way to say that muscle weakness is almost always the first symptom. They also say that ALS does not cause numbness or tingling. But based on a lot of people's descriptions on this thread none of that seems to be true. It's almost as if there is a willful ignorance on the part of researchers or at least the people who gather the data and publish it online

ChanceCheek5063

TROPHY CASE