Could this be ALS?

[Tizy]

Hello. I have been having weirs symptoms since November 8th. I have to say that I got the second shingle shot on October 30th and I had also started Spironolactone (a diuretic given also for other issues like hair falling). A week later I started having muscle twitching in my lower legs, calves and feet.

I also have been having weird sensations in my feet and lower legs like what I can describe like cold/hot/numb, maybe tingling? Sometimes it feels like a vibrating phone. The twitching is worst when I am laying and in the morning. If I am walking I don't feel it as much, but as soon as I seat I do. In the morning though is more active, during the day it seems a bit less. It is kind of constant thought I had times when I didn't see or feel them. I am also having twitching in other parts, but not as persistent, more random, like in my thighs, buttocks, ribs, arms, shoulders.

Just last night I had this thing that freaked me out...my big toe on the left foot lifted up, like cramping, and I had to put it down with my hand. I have some doll aches, like if my muscles want to cramp but it never turns out to be a real cramp. I feel this in my lower legs but also in my hamstrings and buttocks and ribs at random times. I thought at some point that I was feeling weakness, but I especially feel it if I do some like exercise here at home.

I have been dealing with slightly higher level of muscles enzymes. But I was checked again and it actually lowered. I have seen a rheumatologist and a neurologist. They performed a lot of tests. The rheumatologist so far says she sees no sign of inflammation, and she thinks it is a neurological thing.

The neurologist said "you have nothing!". I beg to differ! I have something! She says I don't have ALS. God! I really hope so, but I need more. She performed a nerve test and she said it was normal. She performed a muscle test, where she inserted the needle in the muscles. She only inserted it it two muscles in the calf. She said "You have over active muscle membrane" What does that mean? She said some people have it!! That is not an explanation to me. She said I "might" have RLS or I might have Benign fasciculation. But that is not enough for me."Maybe" is not enough.

What do you think?I know you can diagnose me, but do this sound familiar with ALS symptoms? I am waiting for a second opinion from a different neurologist. But it's very hard to find an appointment. The earliest I could find is on March 14th! That seems so far away. I am really scared. I hope I don't have it but if I do I have no idea how to cope with it. I will try to attach a video of my leg moving.

 

[Nikki J]

No videos allowed. This doesn’t sound like als. Your emg was not als like. She told you the results indicated either bfs or rls. Both are benign. Neither will kill you. You could talk to your pcp and see what they think rls would show on a sleep study they could order. There is medication to help if you have it. Bfs you just live with though stress management and a healthy lifestyle may reduce or even eliminate it. Either way you don’t have signs of als. First step to recovery is to stop using mr google

 

[Tizy]

I appreciate your reply. Thank you.

 

[lgelb]

Second step is making your bedroom a haven of relaxation, taking time to wind down, and getting good sleep. And if you don't need the diuretic or can use something different, that might improve your fluid/electrolyte balance to stop taking it. Not everyone tolerates them well.

 

[Tizy]

Thank you. A dear friend of mine passed in 2017 after a 5 years ordeal with ALS. So, I know how bad it is and I wish no one had to deal with it.
I do have a few questions. An EMG of a person with ALS, what does it show? And what the neurologist told me of overactive muscle membrane is not consistent with ALS?

I did stop taking the diuretic. Only took it for 10 days, after I read the side effects. And my neurologist told me it gives neurological problems. But it had been that the cause, I would think it would have passed by now?

On January 8th it will be 2 months of muscle twitching, and nothing I do makes it stop. It started with some twitching, and with a feeling of tightness around my lower legs. Then pins and needle, hot sensations. That has lessened. Then some muscle twitching on other parts of my body, which I still have. I’m waiting for an appointment with an other neurologist, but not until March 14th.

Isn’t RLS something that comes only at night? This is not a night thing for me. I feel it more when I’m resting, but it’s at all times.
Thank you. I wish this new year will be full of hope for everyone.

 

[Tizy]

Hello. I’m sorry to write again. I don’t want to seem insensitive to the people here already dealing with so much.

I was tested by different doctors. With one the ANA and the sedimentation rate were positive and with the other both tests were negative several times.

With ALS, are the sedimentation rate and ANA show positive results?

Thank you.

 

[Nikki J]

No