SCARED- CRAMPiNG AND TWITCHING

[Lilly13]

Hi all,

I am very scared about ALS,

I have constant twitching - constant cramping - my legs hurt if I walk around allot as if I have over exerted them.

also i have a feeling that my hands are weaker because they hurt and things feel heavier- but from what I have read ALS only appears in one limb.

Does anyone share these symptoms ?

Please help, I can't bare this fear any longer...


Best,

Lilly

[popejoan]

Hi Lilly, I can see that ALS fears totally taken over. I can relate to this because I was the same 2-3 months ago.

I did all kinds of strength tests, gave myself a painful tendonitis, my finger got swollen and my wrists started crackling. I was testing my strength everyday, I was testing my reflexes, was trying to do everything with one finger, like holding a milk bottle etc..

I had an EMG and didn't believe it, I was given neurology exams 3 times, didn't believe them. Whatever I experience during the day, I had the talent to link it to ALS. Couldn't dive long enough in the pool, oh no my lung muscles are dying, my left arm is 1-2 cm smaller than the right oh no muscles are dying, can't open the bathroom door with my left index finger oh no it started on my left hand. I was in hell, eventually I got depressed and lost interest in everything. Maybe it will cost me my graduation, I have two weeks left to submit my dissertation and now I'm in the library on a Saturday night, working on it because I could not concentrate on it at all over the year. I thought I was dying of ALS.

I started taking citalopram and propranolol and they changed my life. I'm still worried about ALS but it's not taking over my life and I can think rationally.

It makes me sad seeing you going through this hell. Please try to believe me when I reassure you as I told you before, I watched every single video of ALS patients on youtube, I know how it looks and I read almost everything on ALS forums.

There is no pain in ALS. Actually pain and muscles feeling tired are good signs, it means they are working. You said your hands FEEL weaker, there is no feeling in ALS, there is failing.

There is not a transition in ALS, muscles just stop working. It's not like you feel weaker and weaker everyday until you can't use that muscle. It happens just like that, one day you have a foot drop and you can't lift your foot from your ankle again, or you can't lift your pinky.

ALS twitching is localized at first. Even though it comes before weakness, which is rare, you don't start twitching all over. First you twitch in one area constantly, and then it spreads to all of your body.

There is no case that cramping and twitching come before clinical weakness. Hope I could help.

[Lilly13]

Popejoan,

Thank you! I definitely relate to the inability to concentrate on your school, I am in the same position. It is hard to accept that there is nothing wrong when you feel so weird, all of the time. But I am accepting that ALS is unlikely, that is the only reassurance I can find...

I feel like googling is my enemy, everything about having "no pain" and "twitching not being a first sign" has been ruined by stories of people with ALS saying the opposite :(

I will try to listen to my doctor from now on, its just so hard when I have constant stiffness, pain, cramps, twitches - they serve as reminders!

Thank you so much though seriously, I love hearing your input it helps a great deal!

[popejoan]

Hi Lilly, I'm glad I could help.

I just want to remind you something, I know what you mean, those stories made me super scared as well. But don't forget that we have health anxiety, we realize every little change in our bodies, we are hyper sensitive.

Those people with ALS might not have realized the weakness or atrophy until they felt the twitches. I remember reading a story and the guy with ALS was saying that he could not open the cans anymore but rather than suspecting anything he blamed the can opener.

Most people are not like us, if we can't open cans we would run to the hospital that moment. :)