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whiteknight1973

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Hi all

like anyone who suspects they might have ALS I'm going absolutely frantic. Even the thought of ALS is terrifying...especially for me as my wife is 8 months pregnant.

I'm going to post my whole story here, and I'd really really apreciate anyones/everyones opinions and thoughts. I have convinced myself I have ALS. I have posted elsewhere on a different thread, but only got limited (but helpful) responses.

All my symptoms appear to have come on fairly quickly, but then when you think back you remember something and think hmm did I have weakness back then etc, or was this or that a sign I missed. I think you all know where I am coming from right? The human imagination is a terrible thing.

Ok so here is a chronology of what happened.....

Week 1
Fasciculations started all over. Completely random. Very big thumpers. Always single fasciculatins (not multiples in one place). They could be as much as 30 minutes apart.

General weakness appears all over my body.

Noticed my muscles shake when ever I try and do anything. e.g. holding a bottle of milk out in front of me with a straight arm.

Week 2
Right calf has become tight. Not too bothersome.

Week 3
Calf is tighter and hurts when I walk. Not too bothersome walking around the house only when out and about.

Noticed fasciculations have become 'softer'. I can barely feel them now, but they are definitely still there.

Week 4
Calf feels like I have pulled a muscle even though I have done nothing to pull it. Really bothers me when I am out. Though it doesnt seem weaker than the rest of my body.

Still feel like I am weaker all over so I tested it. Did some moderate exercise. My muscles 'burn' upon repetive action (e.g. flexes the foot up and down 5 times).

Week 5
Calf feels worse. Noticed that at rest it sort of tingles kind of like cold water running over it. I permanently have that feeling there sort like the feeling you get right before you get the pins and needs starting when you know you've sat in the wrong position for too long. Def not cramp though.

When I wake up during the night is when I feel worse. I can barely clench a fist if I wake up during the night. I stumble going to the toilet as my balance is poor. Pins and needles sensation particularly in my hands.

So thats it....

My weakness is very apparent even to my wife. The thing that gives me hope is that it is very symetrical. What concerns me is what is happening to my calf. i.e. to the uneducated like me it looks like the start of ALS

So tell me truthfully am I worrying too much?

Oh and just as a side note though it may be completely unrelated. I have also had an odd taste on one side of my tongue and during the above mentioned period I also had conjunctivitis twice with light sensitivity and dizziness (it came, went, and came back again and has now gone).
 

whiteknight1973

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Sorry also to add that the calf in question looks different, but only when flexed. Looks like there is a dent in it.
 

wright

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Global symptoms happening almost overnight like you describe is not indicative of ALS at all. Go to a physician and stop trying to diagnose yourself.
 

patricia1

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IT AMAZES ME THAT THE PEOPLE ON THE FORUM WITH THE LONGEST POST ARE THE PEOPLE WITHOUT ALS:roll:

PLEASE KEEP IT SHORT

RELAX

GO CHRISTMAS SHOPPING:-D:-D

PAT
 

BethU

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Hi, Whiteknight...

I agree with the experts ... this does not sound like ALS at all. Please see a doctor, and also check out the Benign Fasciculations Syndrome support group online.

It may be a statistical oddity, but many people facing BIG life changes (like having a baby, or getting married, or changing jobs) find this forum, having suddenly developed twitches or cramps or pins & needles. My hunch is that there is natural anxiety about the upcoming life change, which manifests itself in the body. This doesn't mean your symptoms are not real ... just that they are not ALS.

Good luck with finding an answer ... and congratulations on the baby !
 

Al

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It doesn't sound like MND to me either. I'm no doctor but have seen quite a few people with it. Relax. See a doctor if you're concerned.

AL.
 

whiteknight1973

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I took your advice and I have read through a lot of posts on here. Particularly the stuff about BFS. I can see my symptoms have a lot of similarity with that. Though I cant test if the fascics go when the muscles are stretched or used as they are here and gone in a flash. They never presist. I also have the muscle burning thing going on that some users on here (who are un-diagnosed) talk about.

I believe hat the PALS are the experts on ALS and not the doctors. They live with it every day and can speak first hand about the condition. Doctors here in the UK are totally useless in my experience and will do the next best thing if they dont understand something which is often NOTHING. I have seen my doctor a number of times, and am currently fighting to get a referral to a neurologist (you cant just go to one like you can in the states).

In the mean time I'm left with my worry and anxiety. Its easy to say dont try and diagnose myself.....but I, like many of the ppl who use this section of the forum, cant help ourselves. And the more you look on the internet the more stuff you find about ALS that contrdicts itself - especially about fascics. One site says diffuse fascics are a sign of rapid onset ALS and another says that this doesnt occur in ALS (it starts in one place). So I came here to ask the experts. Thanks for your help anyway.
 

BethU

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Hi, Whiteknight ... you say, I also have the muscle burning thing going on that some users on here (who are un-diagnosed) talk about..

That is the clue: You are reading messages from people who do NOT have ALS either.

Please think this through. You think the people on this forum are "the experts" and know more than neurologists, which is a bunch of baloney, but if you want to believe that, so be it. So you turn to "the experts," who tell you that your symptoms are not ALS. Why don't you believe us?

You don't believe what doctors tell you, and you don't believe "the experts" who have this disease. Hopefully, when the baby arrives and you fall in love with her/him, and your life settles down again, then your anxiety will lessen, and you will be cured.
 

brendapals

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whiteknight-

please, please take the advice from others on here, relax, don't try to diagnose yourself from reading an online forum!

The anxiety of the holidays, a new baby coming, you didn't mention if you have a job- it doesn't really matter- all that stress could be causing alot of your symptoms.

Get on the phone every day, if you have to, and keep trying to get your doctor to refer you, or call first thing monday, and get to your family doctor, so you will have a DATE to track everything with.

mostly, just relax, stressing out about anything doesn't help anybody,
take good care,
brenda
 
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