Another terrified person looking for advice

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shay13

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Hi everyone, first of all thank you to everyone who takes the time to reply, I really do appreciate it. I know how irritating it must be having people come here with the same issues over and over. Thank you for being so patient with us all and helping people figure things out. A little about me, I'm Shay and I am a 23 year old woman from the UK.

For the past 6-12 months the muscles in my calves have felt very stiff and tight, when I squeeze/flex them they seize up into a charley horse kind of feeling. It goes away after a few seconds but the stiffness is always there. It never seemed to affect me more than just being mildly irritating although when walking or exercising I would get quite achy.

About 1-2 months ago I started getting tingling and numbness (pins and needles) in my legs and muscle fasciculations all over my body multiple times a day. Sometimes they are visibly moving under the skin and other times I can just feel it for a few seconds and then it passes. I would say I have them dozens of times per day maybe more. I've had them in my legs, arms, face, eyes, buttocks, feet... basically everywhere. Around the same time I started feeling very shaky and having visible hand tremors. When lying in bed at night I have internal tremors too as if my entire body is shaking but it doesn't seem to be moving. If I put my teeth together my jaw also seems like it is shaking.

My muscles all over my body have started to feel weaker than usual and I've found my balance seems a bit off although not enough to cause me to fall or anything. It is most noticeable when I squat down or stand on tiptoes etc. Trying to do any strenuous things with them causes them to shake.
In an effort to convince myself I don't have ALS I tried out walking on tiptoes, walking foot to foot, standing on one leg etc and I can do those things fine however I'm not sure that is enough to completely discount it.

I tried to research the statistics of people my age diagnosed with ALS in the UK and all I could find was data from the period 1990-2005, during which only 1 person age 20-24 was diagnosed with ALS. However I have been reading on Facebook groups and such and there seems to be a lot of people diagnosed with juvenile ALS on there, people the same age or younger as me. Is juvenile ALS really as rare as it would seem?

I have a telephone consultation with my GP tomorrow about the issues I've been having but because of covid-19 I don't think it will be possible to have a physical exam. I imagine it is going to be very difficult to have them refer me to a neurologist for EMG without even seeing them in person but I am going to try to push for it.
 

affected

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This answers all your concerns.
Please see your doctor
 

shay13

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I am in the process of seeing my doctor but the pandemic is making it very difficult. I did read that however it did not answer all of my concerns. Last time I spoke to my doctor about twitching (when it first happened) she dismissed it as anxiety related. It has since gotten much worse.
 

affected

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twitching means nothing and truly that post I gave you should have reassured you that you are not describing ALS at all. Maybe you can get a video conference so you can get some help with the anxiety you are suffering over your fears. Regardless of what is going on, you do need help dealing with it while the diagnostic process happens. We can't do that, but your doctor can. All the very best.
 
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