Thank you for reading- any discussion would be grateful

[Lisa_]

Hello,
I read all of the pre-reading before I posted. For the past three weeks, I have been getting extremely painful completely torqued and frozen muscles in my feet, calf and inner thigh. When my muscles freeze, there is a lot of pain and it takes minutes for the muscle to release. While it releases, it spasms and you can see the muscle vibrating under my skin, - I have never had this before, it’s like my muscles lock and I can’t unlock them.
I have seen so many you tube and online testimonials where people said their first symptom was leg cramping at night, before any weakness. I am very scared. I have tried electrolytes and vitamins/minerals to no abatement - I am scared because I am continually directed to this after typing in muscle cramps. Did anyone on here present with leg and foot cramps as a first symptom? Did anyone have painful muscle cramps in legs before weakness?

 

[ShiftKicker]

Hello-

Your first step is visiting a doctor. That is in the "Read Before Posting" link first and foremost. Having a physical assessment by a medical professional is where you need to start. You could be experiencing your current physical issues for so many reasons, and it would be difficult for folk here to speculate on those. A doctor can have a look and provide observations and is way more qualified than online reports and youtube videos.

Please see a doctor first before worrying about the potential for a disease like ALS.

 

[affected]

I'd like to know what your doctor said too. The internet will never replace seeing a doctor.

 

[Lisa_]

Thank you, I have an appointment to discuss this next week with labs. But I would like to know if anyone had this as an initial symptom? severe frozen cramping, pain, torqued muscle? Did anyone present with this before other symptoms, in both legs?

 

[Bestfriends14]

Not from my experience, no.

 

[Clearwater AL]

Lisa, you keep asking questions but you have been told to see a doctor first.
There is really no sense to post anything again until you do. Being you say
your apparent first visit is next week... wait until then for anything further.

 

[affected]

What do you mean an appointment to discuss with labs?
Have you seen a doctor who ordered some labs?

The short answer as Bestfriends says is no. Please read this post to understand what we mean.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

 

[Lisa_]

I have a doctor appt this week and a panel of fasting lab work was ordered for tomorrow. I have been trying really hard to keep my mind off of this - to just relax and wait and see. But honestly, I feel really lonely and scared.

This began two saturdays ago, I woke in the middle of the night with severe leg cramping, I couldn’t unflex my foot. It spread to my inner thigh. Then my other calf and foot.

I increased vitamins and minerals. It happened again the following night and then the next week.

While at mass today, my calf started twitching/vibrating on its own and that’s when I really started to cry and feel so scared.

I will wait until I go to the doctor this week. I keep flexing and pointing all my muscles all day to keep checking my wrists, ankles feet and fingers- I just feel so scared and lonely right now -

 

[Bestfriends14]

Your anxiety is way out of control. You exhibit no signs of ALS onset, yet you've convinced yourself that a bunch of innocuous symptoms are a terminal illness. Take a step back and think about how dysregulated that sounds. It does not sound like rational thinking at all. My strong advice, please talk to a professional about your fears, along with your GP. Both these avenues can hopefully teach you coping skills to manage your health anxiety.

I wish you luck. Take good care.

 

[affected]

I'm so sorry you are in this place of fear and loneliness. Vibrations and twitching mean nothing at all - you are doing this to yourself.
Unfortunately this site is dedicated to supporting people with ALS and their carers.

You don't have a single thing that would make us think ALS is even a tiny bit likely.
I hope you can reach out to someone and not feel so alone.
Please do talk to your doctor about these feelings when you go back this week.

You can also try meditating, breathing exercises and start volunteering somewhere. There is nothing better for loneliness than getting out and helping with something in a group. There is always a way to volunteer that works for your time, interests and physical abilities.

 

[Lisa_]

Thank you to everyone that replied.

I am just really confused because of all the people online who said their symptoms were leg and foot cramping long before weakness. Now, with the fasciculations in my calf muscles, I feel so incredibly scared.

All I have to do is flex my calf and it will cramp
and then fasciculate. This has never happened in my life. I am a single parent, I don’t have any support or family, I am it. The thought it could be this and I wouldn’t be able to see my child grow up and there would be no one to care for me
is too much for me to handle. I am all
she has. Thank you for listening to me

 

[ShiftKicker]

Lisa,

It's clear you are very concerned and are not reassured by the information and answers you have received here. Hopefully you will believe your doctors. Please refrain from continuing to post til after your appointment as it seems you are just repeating and looking for a different answer than you have received. We do sympathize, but it is time for you to wait til you have received an examination by a medical professional as there is not much more we can do for you at this time.

 

[affected]

It is the same as being convinced you must have brain cancer because people with brain cancer had headaches.
Agree with above, please don't reply but do come back after your appointment and report your doctors findings.

 

[Lisa_]

Hello,

My lab work came back and something called CK is almost 180. The last two years of annual lab work my levels were always 40-50.

Paired with the recent cramping, fasciculations in thigh and calf muscles and looking up what CK is, it says muscle damage?

My doctor said he isn’t really concerned but wants to retest it in a couple months. Meanwhile, I am just completely nervous - I did tell
him about my leg foot and thigh cramps and fasciculations but he didn’t seem
to correlate the two. He told me to increase magnesium and potassium
and if the fasciculations and cramps are bothering me he would prescribe something.

I also had some back and abdominal muscle cramps and fasciculations this week. I can cramp my calf just by flexing it. I am so so worried and just trying not to feel
this level of fear. I wish I had never even looked up how to treat leg cramps because being told
it was a symptom of this has made me feel so intensely scared.

Thank you for listening - I feel like the new cramps, fasciculations and elevated CK when I never had that before are not good

 

[Nikki J]

That is a normal value on most labs even for a woman. Cpk is so non specific even when truly elevated. It can bump for many reasons exercise is common but even a bad cramping could affect it as cramps are muscles activating