ALS Fear - Twitching/Pain

[Vigilante]

I so can't believe I'm doing this but, I'v had 2.5 years of believing I have a Brain Tumour because of various sensations, now I have both my calf muscles twitching 24/7 NON STOP for the past 8-9 days, I also have what feels like cramping/sore pain down the backs of both calfs/achilles tendons which is hurting quite badly and hindering my walking.

I don't believe I have any real weakness in them, I'm also getting random twitching in other body parts but it seems to be focused on both my calf muscles at the same time.....

I'm getting driven completely nuts by it all.

[popejoan]

Oh no, ALS fear is the worst one. I've been having this fear for over a month now and it's ruining my life. Please don't google anything about it. Twitching without real clinical weakness means nothing. If you don't have weakness in your legs just forget about ALS right now.

[Serenity1990]

None of what you mention are even synptoms of ALS.

[Vigilante]

Thanks for the replies, Serenity did I read on another thread that you have bfs? I was wondering if If I actually may have that, as I had twitching and hypnic jerks back as far as 2002 during a period of anxiety although its not as bad as this currently is.

My dr is testing electrolytes (sp) in the blood as I usually weight train 3 x per week and sauna 2-3 x per week, I also had a bad cold/flu bug a couple of weeks ago, with fever/fatigue/aches and pains and have not felt right since that I was chronically fatigued for a good week or two then I was feeling faint when walking with a sick like feeling up until sunday, this twitching started about 10 days ago.

The pain is the worst part of whatever is going on, it is up the achilles tendon and into the calf muscle of both legs exactly the same, feels like stabbing/burning/cramping pain although the muscles do not appear to physically cramp, just the mad twitching.

[Serenity1990]

Stabbing/burning are sensory symptoms, which ALS is not capable of producing.

Fasciculations in ALS are basically the junctions between the nerve and the muscle dying. They come AFTER obvious clinical weakness, which your doctor would not miss, and neither would you. They are localised to the affected limb. Widespread fasciculations are not ALS.

ALS is pretty much as serious as diseases get. It also progresses very quickly. The idea that you could have it without your GP realising something serious was going on is frankly fantastical. It's also pretty much as rare as diseases get, so it's really not something you would have a high probability of having even if you did have compatible symptoms.

There is a BFS forum, which youve probably come across. In some ways it's fantastic, as there are some really knowledgeable people on there and the owners have contacted and had things written for the site by world renowned neurologists, as well as various papers explaining things. If you read this stuff there is no way you would rationally believe you even have the faintest possibility of having ALS. However about 80% of new posters think they have ALS and about 20% think they have another neuro nasty, and as such with everyone asking the same questions the reality is the old (and sensible) members don't answer many of the posts, and there is a hell of a lot of rubbish and conjecture dressed up as fact on there. The best way to use that site is to search stuff through Google with site:aboutbfs.com after the search terms. That way your first page is the useful threads accessed by thousands, and the rubbish is buried in page 200. :)

[DaisyP]

I have mad twitching all the time. i've been to see a neuro this morning and she says i am fine. If it was ALS or a brain tumour you would be progressively getting worse, honestly. I also get burning, heavy leg muscles.

[Vigilante]

Thanks for the replies, I know I should re-assure myself, I did go to the gym earlier and beat my personal records in my lifts so that has picked me up somewhat.

I'm trying hard to cease calling my gp as I seem to panic everytime a sensation or symptom come along and call straight away. I know the only real way of breaking the cycle is by being able self re-assure and move on and ignore the sensations instead of letting it control life. Its a damn hard thing to do though.If I was correct all the time I would have died about 10 x over now of nvCJD, Brain Tumour, Lung Cancer, Bladder Cancer, Throat Cancer, Kidney Cancer and lord knows what else.

[Lilly13]

Hi fellow twitchers :flowers:

This is possibly the scariest anxiety symptom, I have ever experienced. I was willing to let my anxiety for twitching go, but now I feel as if my muscles are constantly achy/stiff/sore.
I can't seem to fight this fear of ALS. As I fear that my body is constantly getting worse day by day.

Has anyone else experianced these horrible aches and pains along with twitching?

Thank you for your time,

Lilly
xx

[Jbaine]

With my first flare up of HA I had twitching and pain everywhere. Buzzing feelings in limbs, toes and fingers that moved all on their own. Perceived weakness. Swallowing and voice problems. These are just some of the scary symptoms I had due to anxiety. The more I focused on it the more it happened.

There is a great forum for this called aboutbfs.com. It is for people with benign fasciculation. The forum helped me greatly.