Symptoms of Concern: 30yo Male

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J

JohnLSports

New member
I am a 30 year old male who has been having the following symtoms for at least the last 4 weeks and it has be very worried. I have in fact convinced myself it's ALS

Tight mucles in my right calf and my right forearm. They both just feel really stiff and crampy.

Muscle twitchs all over my body. Legs,calfs,arms,thighs, shoulders, pretty much anywhere. Sometimes if I rub the twitch it will stop.

I wake up with numbness in my hands and arms on an almost regular basis.


I saw my Primary Care Doctor about 10 days ago and he have me a complete nurological workup which lasted about 70 minutes and the only thing he noted was the my reflexs in my legs were brisk. I did tell him my concerns about ALS and he said he was quite certain I did not have ALS, but I think he was basing that mainly on how rare it is and my age. I just started a new job and my insurance won;t start for other 3 months which is why I don;t think he recommend an EMG.

For the last 3 weeks I have obsessed over ALS and my body. I have pretty much read every single ALS web-site there is. I don;t think I have weakness but I really don't know for sure. At this point I am having trouble focusing on everyday life because of my fears.

If anybody has some advise,suggestions, or maybe somebody had similar symtoms I sure could use some good words to at least calm my mind a little. But please be honest and don't hold anything back. Thanks

Jason
 
Jason,

First off, please don't visit ALS sites. Everybody on this forum will give you the same advice, and most everyone on this forum has also made the same mistake.

Tight muscles with the twitches are symptoms many of us here get. In fact, my calves have been really bad the last couple of months. I'm now into my eighth month of this, having been diagnosed with benign fasciculations, and have not developed any weakness. In fact, I just finished a 5 km run before coming down into the basement to cool off in front of the computer.

Sounds like your symptoms are close to mine, as I twitch all over, and twitching will also stop for me if I rub the area.

As for numbness, sounds like a circulation problem, or pressure on nerves from sleeping on your side. Again, I get this too, but it seems to be more prevalent in the winter for some reason. Maybe it's just that I get in better shape in the summer.

I'd also suggest you read through a lot of the previous posts on this board, and I'll bet you'll find a lot of things in common with other BFS'ers as well. Try to divert your attention to other things other than the twitches. You'll find in time you'll almost get used to them.

While I know there are better ones to belong to, welcome to the club!

Cheers,
Heath
 
Jason,

You seem to have all of the classic symptoms of BFS,... widespread fascicualtions, no weakness, parasthesias (the tingling in your extremities), muscles feeling tight and crampy, normal neuro exam and an overwhelming fear of ALS.
Try to focus on the fact that your physician spent 70 minutes examing you and wasn't concerned! Remember that an EMG is a test used to confirm a suspicion of a neuromuscular problem. If your physician didn't have the suspicion, then the test becomes unnecessary; except to calm your fears!
Believe me, you are not alone. Everyone here has been where you are now at one time. We all feared the worst, and that fear can be all consuming. Try to relax. Read the posts of so many folks just like yourself; you will find that your story is very much like everyone else here. What you have at your disposal is quite unique; you have what is probably the greatest number of people with BFS anywhere in the world on one forum. Welcome to the board!
 
Your symptoms are exactly like mine. I remember the horror of reading those websites. DO NOT GO ON ALS WEBSITES. They will only make you more afraid. If you look up ANY disease you will always find a symptom you can relate to. Brisk reflexes are not abnormal, especially if you are young &/or nervous. If you feel the twitches it is not a sign of als. Most people with als that twitch never even know it until their neuro points it out. These people almost always start with weakness that is profound-not maybe a little weak. They can't use their hand etc. Waking up with numbness is absolutely not a sign of als. 5 neuros have told me the same things. Most people don't gp to the Dr for twitching alone-only if they look it up on the internet and get scared. Don't worry (I know, easier said than done) I'm sure you will be fine.
 
Hi Jason,

Definately keep off of those sites. Way to dangerous for our minds and health!.. Everyone has given you some great advice. It's rough when you first start worrying about it, but I think with time you will focus less and less on it, like most people. Wow, your doctor spent a lot of time on you and he felt nothing was wrong, that's great! Hold onto that. If he even suspected something was wrong, insurance or not, he would have to send you. He can't risk having a lawsuit against him for not sending you for further tests if he felt it was necessary just because you had no insurance. Hang in there!
 
If you feel the twitches it is not a sign of als. Most people with als that twitch never even know it until their neuro points it out.

I have twitches I don't feel and twitches that I do feel.

peg
 
I would like to thank everybody who has taken the time to reply to my concerns. Right now the thing that has me most concerned is that fact that my right calf and right forearm have a constant crampy feeling. I am also concerned that my right ankle and knee both make a popping sound whenever I bend or twist them. All of that along with my twitchs has me very concerned. I am still very scared but it is nice to know that other people have at least experinced my same symtoms.

Jason
 
Hey fellow twitchers,
I was just thinking that wouldn't it be great if everyone on this website would donate a little money to ALS research. Maybe at Christmas that could be our Christmas gift to a research group from about bfs.com.
That way we could turn our obsession with ALS (which none of us have) into something that could help people that do have it. Maybe John V could publish an addresse that where we could send him a check and then he could send in a big donation from all of us. We should use this experience do do something beneficial and this would be a good way to turn our negative experience into a positve. We've all researched ALS enough to know that dollars are needed. Just a thought.
 
I second that! We would all benefit from a cure for our worst fear! I feel so bad for the people who are suffering from that disease and I would do anything to help them. I heard "project als" is a good one to donate to. Somebody answered one of my old posts with a link to that site (I would suggest not going on that site but have someone else do it for you and get you the address to send $) I think my post was called "finding a cure"
 
Jason- A very good neuro from Cornell-Weil told me that cramping is very common with bfs. Most of us have that. Also I read other people complain about the popping--that is not a sign of anything bad. Promise.
 
I think it would be neat to send the check as one from all of us. I like the idea of John giving us an address to send the money to. I would feel really good knowing that we presented it together as one after all the hell we have put ourselves through. I would be willing to private mail John and ask him if he would do this. I couldn't give much but anything helps!!!!!

Let's do it!!

Karen
 
I'm totally in with donating to help ALS research. It is what is needed for ALS and for us because imagine what a cure for ALS would do for BFS people. It would cure for a heartbreaking illness ALS and another illness crippling fear of ALS that many BFS'rs have.

Please, let's pull this donation together and let me know how I can help.

Ava :D)
 

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