Experiencing symptoms cannot ignore

[Cromwell11]

Hello everyone,
I feel ashamed to write here and take up your time. The last year has been tough and I don’t know what to do.

To start off, I lost my uncle to this horrible disease three years ago. So I have seen up close what this disease means.

Starting in May last year I started to experience “fatigue” in my left hand while at work (typing on a computer all day). My thoughts went quickly to ALS. Within weeks I started to feel “weird” in my left foot (June-23). It felt weird when I was out running and walking. By this time all my thoughts were consumed by this disease. This was and is almost everything I think about. And I’m constantly watching & testing my body.

About this time I also started to get twitches. First in my legs and then all over my body when relaxed.

I did an EMG and was told everything looked good (I haven’t seen the results, was just told this), they only put the needles in my arms and legs. This result comforted me and between September and April, I could control my anxiety.

Then in May, I couldn’t control it anymore.

My symptoms are

• Twitches - all over the body when I’m relaxing. Legs, arms, back, stomach and sometimes jaw and tongue. Even inside my ear.
• weird feeling in my left foot. A few times a day i drag a toe to the floor (happens to both feet). My left calf looks different from the right one, but they are about the same size around.
• The right eyelid is one or two millimeters lower than the right one. Nothing that anyone notices if I don’t clearly point it out (some people don’t see it even then). This has not been the case before, it’s also a bit “slower” than the left one.
• My speech is getting worse. In the last week, I find some words hard to pronounce, especially “R” and there are a few times every day when I’m not pronouncing it correctly. If I try again I always manage to do it. Worth mentioning in all of this is that it creates a huge amount of stress and every time I’m about to talk I get stressed about pronouncing something wrong.
• Fatigue in the neck. I have also had neck pains in the past weeks.

Timeline:
May 2023 - Fatigue in left hand
June 2023 - Twitches & feeling weird in left foot
August 2024 - Right eyelid drops (a little)
September 2024 - Fatigue in neck
October 2024 - Speach getting harder

There’s nothing I can’t do. And to make me sound even crazier I ran a marathon in June 2024. But still, I cannot shake this off, especially now with my speach.

So my questions are:

• Does this sound like early symptoms?
• can it progress this slowly? (17 months and there’s nothing I can’t do)
• Can it progress in so many different parts of the body at the same time?

 

[ShiftKicker]

Hello-

Please read here: Read Before Posting. We do ask that people visit with a doctor first if they are having concerns about their health. It sounds like you have seen a doctor over the last little while- if you remain unconvinced that the EMG was done properly or that it was done too early then please return to your doctor. If there have been changes, they will already have a baseline from your previous appointment(s) and can work with you to figure things out.

Per the link, you do not report the pattern of symptoms that indicates ALS. To figure out what it might be is something you would have to continue working with your doctor to resolve.

 

[lgelb]

Very sorry about your uncle, but I don't see ALS in what you describe, and I don't think your rational mind does, either.

There is no shame in seeing a counselor about your health anxiety. Testing and worrying takes a toll on both your physical and mental health. I suspect you are not getting enough deep sleep to refresh the body or mind, either. So all this can be a vicious cycle.

Many people become hoarse (I did today, while teaching a class) or fumble their enunciation as it becomes colder or drier or trees lose their leaves. But of course anxiety makes it all worse and when you are on edge about doing something, it's harder to do.