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Elise

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Goodday Everyone,

I posted her a few before because of my twitching symptoms.
Something new came up and I'm very worried about it. I have severe pain in my ankle and pain in my leg (both right). As far as I can tell I did not do anything with it (only some clonus tests done by a friend, but that was days before it).
It's already been 6 days with this extreme pain. Pain killers don't work.
I still can walk on my toes.

Can this be ALS onset?

Scared Elise x
 
Elise - I am far from an expert but from what I have read and learned from my Dr. pain is not a typical symptom of ALS. That being said painful cramps and charlie horse type symptoms can be normal but typically not just pain. I am sure the PALS on this site who have been living with this disease will have a more thorough perspective to provide you.

If I were you I would see a Neurologist because honestly they are the only people who can diagnose you. Remember ALS is rare and twitching alone is far from being a prime indicator or being ALS.

Do not waste your todays by worrying about tomorrow and what if's!
 
Put ALS out of your mind, your symptoms are not those of ALS.
 
Thank you TedH5 & Joelc
this was my first post:
Hello everyone,

I'm Elise and I'm 32 years old. I've been having some strange things going on lately that I think maybe could be ALS onset.

About 2 years ago I started to have muscle twitches. First eyes, than calves, arms, back, chest. Really everywhere. At first I didn't think really much of it but because they increased and never stop I went to my local doctor. He said I was probably tired or low B12. I took vitamines but nothing helped.
Finally I looked up the muscle twitching for some possible explanations and I came up with ALS. I went back to te local doctor to express my concers for this. He didn't really know what ALS was and he said I could best go to a specialist in neuro muscular diseases.

Last month I went to a neuro muscular specialist in a clinic. He examined me. Doing test like walking on heels, stick out tongue, balance, strength , reflexes and so on.
My reflexes are very brisk and had a beat of ankle clonus he said. But he said that they see that a lot in young healthy people and did not think it was anything pathological. I expressed my worry about possible ALS but he said that nothing in my clinical examination pointed out in that direction. He saw no reason in more testing (like nerve test I guess) I went home relieved.
I have searched a bit on the internet about this and I notice that brisk reflexes, twitches, cramping and is part of ALS.

For the past weeks my right leg is hurting and sometimes I have the feeling I'm walking strange but family says that they don't see anything. It feels weird, maybe because I try to test clonus in my ankles myself and I hurt it?
Another thing is that my hands and arms and sometimes legs shake a lot lately. I must say I'm having anxiety over this and don't know if that can increase my symptoms.

- I posted this on 25 june and than I was complaining about my right leg but it was not like it has been the last week. The pain is really severe in right ankle and right knee. I was thinking it was maybe because of some kind of weakness that I myself did not notice clearly and therefore resulted in pain?
 
Hi Elise- I think if you saw a specialist in neuromuscular disease and he said you don't have ALS and he does not need to see you for follow-ups or do any additional testing, then I would stop worrying about ALS. Did the doctor mention BFS, also known as BCFS? this is a benign condition causing muscle cramping and twitching and is apparently quite common. There is no weakness associated, however. If you do not have any frank weakness, i.e., inability to do something you have always done with a particular part of your body, then I would stop worrying.

take care--

Sandra
 
hi Sandra - with the ankle and knee pain I'm kind of limping all the time. I saw a neuro BEFORE the ankle and knee pain, I saw him for the twitches and he said it was BCFS.
I'm a little afraid this severe ankle pain is the onset or something, that it hurts because of weakness I do not really notice. But that my foot is weakened and therefore in terrible pain. I didn't do anything with it, except for some clonus ankle tests done by a friend a week ago.
 
Hi elise,

I have been through all this twitching, percieved weakness etc, and ALS has worried me sick, largely because that is what killed my mother. I also get an ache down my whole right arm, which is the arm I am most worried about as I get most of my twitches, percieved weakness there.

HOWEVER ...

I also joined the BFS forum, and I have to say my symptoms are far more typical of BFS than ALS. I do still have my moments when I freak out about ALS, but when I am feeling rational, I know it is actually BFS I suffer from, and I suspect you do too. I find that site far more reassuring than this one, largely because no one on there has ALS so you don't find the scary stories you find on here.

With BFS (Benign Fasiculation Syndrome) pain is a pretty common complaint. In fact, just about everything is 'normal' with BFS. My Mum did have a lot of pain with her ALS, but only after her weakness was pretty far progressed. If your neuro gave you the all clear, you're clear. Buy yourself a book on CBT, or health anxiety, accept that you have BFS, and get on with your life.
 
Hi Haylewart

I read your posts and saw you wrote that your mom's initial symptoms also were not ALS like and that she also had pain in shoulder and arm first.
My pain is not just BFS muscle pain. This is really severe pain in my ankle and knee, I guess because there has the be damage and sort of weakness it cannot carry my weight anymore and therefore it starts hurting like crazy.
 
Have you seen your primary care physician about this new pain? If so, what did he/she say was the problem? If not, why not?

Pain that is so serious that pain killers don't work on it is nothing to be trifled with. If your pain is being caused by an injury, you could be doing more damage every day by leaving it untreated. An example of this might be a strained muscle or tendon caused by an abnormal way of walking.

Just because you think your leg and ankle pain is related to your twitching doesn't mean that it is.
 
No I haven't been to my doctor because he's on holiday until 22nd July.
I'm wearing a brace round ankle and knee now and pain is less severe. But I just keep thinking this is ALS onset
 
TRFogey gave you great advice. Acute pain, that is not helped by pain killers, should not be ignored...continuing to use the leg/ankle (extremity) could cause MORE damage...
Get to a doctor.
Peace,
 
Goodday Melodyparrish

Do you apply with this it good be an ALS onset?
 
There are a lot of things it could be -- probably hundreds of if not thousands. The question is what it is likely to be -- and ALS onset is not likely to be anywhere close to the top of the "likely" list.

Speaking from my own personal experience, my arms and hands are so disabled by ALS that I cannot raise my hands to my face to scratch an itch on my chin. I have never had the kind of pain you describe in my hands and arms.

I have broken my ankle twice and torn multiple ligaments in it two additional times. All of those times, I had the kind of pain you describe. All four times, easily treatable and fully healed. Get to a doctor, find out what's wrong with you, and quit torturing yourself like this.
 
Your issue here is not ALS but something equally serious. You are obsessed with ALS. Even after Neurologist telling you he doesnt suspect ALS,you are still surfing for symptoms and words he used.

You are waiting for someone to tell you that you have it. Take this as treatment and stop surfing internet for ALS and anything else. Are you worried about flu? No. why? Coz it's not fatal.

Worry about ALS? Yes. Why? Coz you will have miserable life till death.

When you dont have ALS and you are still obsessed with the toughts,what else are you doing other than living miserable life till death.

Please stop surfing..

Your friend,
Nachiket



















.
 
I have suffered a lot due to this and I really really don't want anyone to suffer.

Do you check the symptoms again and again?
Do you test the strength of legs/arms by doing particular actions like walking on toes, lifting things?
Do you walk very conciously feeling that you will trip?
Do you see everything that is happening to your body with great deal of sensitivity?

Your symptoms are so generalized that they cant be ALS.

You have obvious health anxiety disorder, obsession about health, especially fatal diseases.

If I tell you that your symptoms are similar to my onset of CIDP, then will you look up CIDP in google and be convinced in few hours that you have CIDP instead of ALS?

This does indicate that you need counselling and medication for your mind. Please don't worry. Take professional help.

Join some other forum, like photography, nature, blogging. There are so many good things in life.

Why keep thinking about deadly diseases and be compulsive?

Please come out of this and enjoy life. Its only once..

Take care..
 
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