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johninsingapore

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Nov 14, 2012
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Country
SG
State
Singapore
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Singapore
Hi all,

I am new to this forum and am very grateful there is a space like this. First of all my thoughts go out to anyone suffering from this disease. Until recently I didn't even know it existed.

I was wondering if anyone can comment on any of my symptoms. I am between jobs so have no cover. I know I need to see a neuro but may have to wait weeks, maybe months :( Any thoughts on the below? ALS vs BFS? Any help would be greatly appreciated.

About 2 months ago, my right index finger got very swollen out of nowhere. I could not open locks, do up buttons, etc. It stayed like that for about 4 weeks and is now almost recovered.

Then 1 month ago, I noticed some pretty extreme twitching in my right calf. I ignored it.

1 week ago (after a flu) I noticed the twitching again in both my calf muscles. Quite extreme and 24/7. It does not stop. Under certain light I can also see twitching in my feet and also in my hands. I have also had a tingling feeling in my tongue, this started about 3 weeks ago before I read about ALS and has persisted.

Since reading, I have been testing my muscles, my left calf feels weaker and I cant flex it like I can my right. I can only flex it in a certain position. I also wake up with alot of soreness / stiffness in my left foot and the muscle that connects the feet and the leg.

Anxiety has kicked in and it is consuming me. I literally do not leave my house and am driving my friends mad. I'm fearing the worst and just don't know what else it could be.

My grandmother had parkinsons and I had shingles when i was 17 so there is history.

Can anyone help me?

Thanks,
John
 
Hi John

Singapore has a fascinating medical system which appears to provide a wide variety of care so I do not understand why you have been unable to go to see a doctor.

I am equally baffled as to why, notwithstanding your warm sentiments to those suffering from ALS/MND, you have not bothered to read the stickies created by them to help people such as yourself.

I suggest that you do both, since both would be helpful in determining what, if anything, is wrong with you beyond self- induced damage from all the self testing you have been doing...
 
ALS starts in a single part of the spine and the lower motor neurons that hook up there. Your calves, fingers, and tongue aren't even in the same neighborhood as each other from a spine level perspective. What that tells us is that you do have benign fasciculations, and given the consuming anxiety you mentioned, probably BFS. BFS commonly causes great anxiety. There's no shame in that, a lot of people have dealt with this before you.

Unfortunately, for most people just learning the anatomy behind ALS and why they don't seem to have it isn't as helpful as it would seem. The anxiety itself becomes the real enemy. If you find yourself obsessively reading about neurological diseases, grasping at straws, thinking you and you alone have this weird new disease onset, those are signs of this very damaging health anxiety. Most people in this boat eventually get an EMG and it comes up clean. Even that, however, does not quiet the anxiety, it merely redirects it. Now they start looking for things that don't show up on an EMG. They often go through phases of concentrating their fear on other diseases. It is this fear itself that is life damaging, and it builds on itself. The anxiety and stress make their own mysterious symptoms that only make the doc's job harder.

I tell you this because if you find your thoughts are working this way, you NEED to get help, insurance or no. You need someone objective who can help with the anxiety, someone that you can trust. You may need to put some decisions in their hands, because in that situation your perspective will become flawed. If you have a very sensible spouse or sibling, ask them if your legs look like they are working correctly, and have them tell you when they aren't and you need to see a doc about it.

What you can do right now is to stop researching neurological diseases, and concentrate your focus on other things in your life. Get help for the anxiety. If you at some point find yourself with a symptom that is causing difficulty in your life, that someone else can see, by all means at least go to one doc visit to have them tell you what they think. Having BFS doesn't make you immune to other problems.

I say this quite seriously - being diagnosed with ALS causes people to spend money and go on vacations while they still can. Living in obsessive fear of ALS destroys marriages, loses jobs, and causes people to hide in their home while PALS on vents are taking powerchair walks in the park. Don't let the fear win.
 
Thanks for your comments guys, I really appreciate it.

I know I may be over reacting but besides everything the twitches in both my calf muscles have been persistent and non stop 24-7 for almost 2 months. Can this really be nothing?

I have been on magnesium, hydration salts and have been resting my muscles and nothing has worked at all. I'm sorry for worrying considering what other people are facing but I'm convinced I am unwell.

I will get some professional help ASAP, was just hoping someone could help with my situation in the meantime.

Thanks again,
John
 
You just received excellent messages from the top people here.

Here are additional helpful hints:

1) Read their answers
2) Read their answers again
3) Before looking for twitches- read their answers
4) After looking at twitches- read their answers
5) Make an appointment with your physician ASAP
6) Return to this forum and tell us what your physician told you


Since you are " convinced" you are unwell- you likely are unwell. Only a real life Dr. can assess you.

Good luck.
 
Went to mod.. stay tuned.
 
BFS isn't nothing, John. It can be annoying, even minorly disabling (or majorly, if you count the dose of anxiety it brings). It just isn't something that causes progressive nerve damage. It is like a garden variety headache: it can ruin your day or your week, but it isn't a sign of something terrible happening in you life. It isn't something to worry about, just something to learn to live with.

If you head over to the BFS community, you'll meet people who have had years of non stop calf twitches. (The calves, for whatever reason, are the most common nonstop twitching area.) You will meet people with a host of irritating symptoms: sleep disturbances, sensory problems, strangely cramped toes, etc. They have something, it just isn't a dangerous something.
 
I took the good advice of the people here and saw a GP.

She noted possible weakness in my left calf and slower reflexes as well.

She has referred me to a neurologist who I will see next week.

I came home and broke down. This is all so challenging and the fact that the twitching is stronger than ever in my calves and feet is very worrying.

I also had very achy legs last night and was wriggling all night.

Not sure what advice i'm asking for, i'm just terrified right now.

John
 
I don't have ALS but i understand the anxiety. Just because you have weakness doesn't necessarily mean its ALS. I've read a lot of stories and many times its the neurologist that has the answers, not the GP (that's only my opinion/conclusion from the posts i've read online).

I have many crazy symptoms now including shakiness and muscle twitches everywhere, including my face that has been going on for months. Also, 5 and a half years ago i had very strong twitches after the flu, so maybe your body is still trying to recover.
 
John,

It's okay to be afraid. It's okay to break down. It's okay to worry. Stress and anxiety can manifest things in your body that you never imagined possible. I'm not saying that's what's happening, but try to keep in mind that everything could be exaggerated by what you're feeling emotionally right now. The best thing that you can do is wait and live as normally as possible until you see your neuro. Keep in mind that your symptoms can be caused by many things. Be strong! Let the doctors do their job and try to stay focused on everything but your symptoms until you talk to them. =)

Marissa
 
John: Been there, done that. I was like you. Have twitching , weakness, etc. Been through tons of testing. In fact, just had another EMG, NCV (my GP wanted me to have). Three different neuros. All of them have told me that I dont have ALS or any type of muscle disease. EMGs have always been normal. I do have some neuropathy (NCV) which can have many causes. Now my task is to find the cause and remedy that. I did have a bleeding polyp which led to low iron which can cause neuropathy. Im pounding iron right now. Do I have a low Thyroid? Do I have candida from some bigtime antibiotics I took a couple of years ago? Did the antibiotics themselves cause this? I had a varicocele which was killing off my testosterone, is that the cause? Do I have vitamin issues? There are so many treatable things that can be causing your symptoms. No doubt anxiety is feeding your symptoms. My weakness I have learned through this forum is preceived weakness and not actual weakness. Look up the difference. When I first came on here some time ago, I was just like you. I had such health anxiety it was eating me up. I got some love and some tough love from this forum. Listen to this forum. Wait for your testing to be done and the opinion of your neuro. Your mind is very powerful and can do many things to your body. Relax. This forum is here for you and the people here are wonderful.
 
Your swollen finger and your tingling tongue have absolutely nothing to do with ALS. I can assure you of that. The twitching in your calves is very common; my calves are twitching like crazy as I type this and I'm not worried in the least. I simply choose to ignore it because I know it's absolutely nothing.

It's my guess that your inquiry about ALS on the internet caused you to look at your body with a fine-toothed comb . . . low and behold . . . here you are obsessing about your twitches. Those twitches were always there, you just didn't notice them until recently. Now they're worse. Why? Because you noticed them and the panic you are currently in is causing them to get worse. You're probably not sleeping well or eating well or doing anything well, except looking at your body tirelessly and testing your strength over and over again. What will that lead to? More twitching, soreness, fatigue, sleep-deprivation, etc . . . pretty much what you're experiencing at the moment.

You feel the way you do because you caused it. Until you own-up to that, the non-sense you are puttinig yourself through isn't going to stop. It's up to you to stop the cycle and get better again. I am confident you do not have ALS or any other type of life-threatening condition. I am also confident that you suffer from hypochondria and anxiety. Fortunately there are professionals that can help you with that . . . and fortunately, you can help you with that as well. Make the decision to do just that.

I wish you peace.
 
Hi again,

Thanks for all the amazing advice, it has been very helpful and today I will donate to this site so it can continue to help people like me!

I saw a neurologist earlier today and he conducted a nerve conduction test and an EGM. All the results including some blood tests were normal which was a huge relief! I was pretty nervous during the test and kept asking him "was that normal? was that normal?" - what a head case! He did suggest I take Vit B complex and gave me some pills (Lryica). Any thoughts on taking these? I think I will take the vits but avoid hitting the meds.

I am still not happy about the constant twitches in calves and feet. My tongue also still feels tingly, I have a weird taste in my mouth and I feel fatigued. It just feels like something is up but at least it's not neuro related. Not sure if I should go back to the GP to continue investigation or just ignore it all and hope for the best? Neuro told me to just ignore it all as it could be anything.

Anyway, just wanted to close the loop. This experience has been testing but has made me re-evaluate some things. I plan to contribute to MND research ongoing for a start.

Thanks again, i will check back with any updates.

John :lol:
 
Lyrica is supposed to be good for functional neurological problems that intersect with anxiety and depression, I'd give it a go. Most people with clean EMGs get sent home with nothing, if you got something I think it's worth trying it.

Congratulations on your excellent results, and good luck with the future.
 
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