can someone help me please very scared

[scared in toronto]

I am a female that just turned 50 this June. A couple of days after my birthday I started getting twitching in my lower legs. This continued on for =about 1 month. In the last 2 weeks I have had some tingling on my shins and arm that comes and goes and now I feel weakness in both my thighs and calves on exertion. I am very very scared about this as all this seems to have happened in the past 6 weeks. My thighs and calves also feel like jello when I am walking and sort or sore. I have tried strengths tests and I can do most things, but continue to have this weird feeling in my legs. I am weeks away from a neurology appt and have been so scared that I am unable to eat and have been losing weight .
Does this sound like ALS, like I said this has consumed my life and I am having a very hard time coping with what is going on. Can someone please offer me any help as soon as possible. I will be getting and EMG done at my neurology consult. My dr. doesnt think its ALS but from what I have been reading I am getting very scared. :sad:
Thanks to all for reading.

 

[jamiem]

Calm down and recognize what you can contol and what you can't. ALS is difficult to diagnose and it is a long journey. Don't jump to conclusions. Get some help with your anxiety. We are all here for you. jamiem

 

[ottawa girl]

Hello -

I can only speak from my own limited knowledge - but I believe tingling is NOT an ALS symptom. Twitching is common in many people and is most often benign. Try to stay off the internet (it can be a dark place and alarm you unnecessarily) and wait until you see the neurologist. Your Doc. doesn't think you have it - so trust that. I also live in Ontario - and in my own experience - if your Doc thought it was something very serious - you would not be waiting weeks for a neuro consult. ( I was seen in 5 days by a neurologist). You sound panicked - try to relax and enjoy the summer. Toronto is a fun place - go out and have some fun (and ice cream). Let us know how it goes after your neuro appointment.

 

[edwards5257]

DO let us know about your neuro visit. I can all too well understand your fears, I still face them, even though no ALS!

 

[sporty2k]

Hi - I would not worry.

I had a very similar thing happen to me. My calf's began rolling and twitching like crazy! I had tingling to the touch on my shins. The twitching was 24/7 and got to the point where it appeared that an alien was living in each. I was sooooo scared. Like you I contacted a neurologist but the earliest appointment was three weeks out. It was the worst 3 weeks of my life. I was sooo depressed. I was convinced I had ALS. I was going to the gym and trying to convince myself I was not losing strength. I was making deals with God. Every body change made me think that I had it. Finally get my EMG and it shows no signs of ALS. Bottom line is that was 8 years ago. My calfs still twitch 24/7. I know its hard to get you to put it out of your mind but KNOW that many others have had your exact symptoms and DID NOT HAVE ALS.

 

[Tokahfang]

Your description sounds a lot like BFS, and not like ALS. And six weeks is much too short a time frame to worry about life threatening diseases in! Go to your neuro appointment, but don't fret in the meantime. I've observed people who focus outside of themselves (taking up a new hobby, volunteering, etc) make it through the wait with a much healthier mind than those who sit around thinking about it all.

 

[Robynnblue]

I totally agree with Beky...Your description an symptom presentation sound very much how my BFS started...my legs and ankles felt exactly as you descibe..like jello...but I could still do strength tests the doc asked me to perform...I lost a ton of weight my self from nerves, anxiety whatever you want to call it...If you would ever like to talk more about this..please feel free to leave me a message on my page here and I can then share with you my email and chat room link if you like for other BFSers that I run..We have a great group of folks there with similar stories .

Please try to relax...These symptoms are sounding very BFSy to me...

take care

Robynn LeAnne


P.S..Beky if you see this, please feel free to share my BFS chat room link with anyone you think may be heading that direction

 

[scotslassie]

Try not to worry sweetheart. You sound exactly like me. I started to experience all those things when my aunt was diagnosed with bulbar onset. Anxiety breeds anxiety and the mind is very powerful. Carrying washing upstairs and changing duvet covers left me with jelly arms and legs. Even now, my legs have a life of their own with the twitches very visible. It has taken quite a while but now the tingling/pins and needles sensation has stopped along with the twitches in my torso and arms. The jelly legs & arms have almost gone also. As Becky said, try to keep your mind occupied with something you enjoy doing or requires all your concentration,and hopefully, before you know it, hours will have passed without you being aware of a twitch or tingle. The weight loss ties in with the worry. All the best to you and let us know how you get on.

 

[edwards5257]

THANKS Scotslassie!

 

[jlynn6212]

Hi my name is Joyce. It is a terrible feeling to be scared. I know I have been there. Stay off the internet. I do have ALS, but I do know there are alot of mimics out there so it could be something else. The EMG and BW you have done will determine what you have. Please know I will be thinking of you and keeping you in my prayers.