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Dellogan1977

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Sep 23, 2016
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Reason
Learn about ALS
Country
UK
State
Lanark
City
Bellshill
Im really sorry to be posting here but im at my wits end and i understand other people have been in the exact position i find myself in but any infirmation would be greatly appreciated by me.

The short version is i have been having fasciculations in both my calves for nearly 8 weeks, it started in my left knee and i felt/still do feel a weakness in it.
It has now progressed to my right leg which again is starting to feel weak to me.
The fasciculations started in my knee but seem to have progressed to in the main in both my calves, with some still in my knees and some in my thighs.

Although they feel weak to me i am able to walk and drive ok, stand on my toes and heels + also tried some strength tests yesterday including jumping up stairs, walking down them backwards on the ball of my feet, jumping for 1 minute as if skipping bt without a rope.

I managed all these things, not easily but did manage them but i am so worried that this is the onset and proper weakness has not fully set in yet but this is the beginning.

I also have some weakness in my arms/hands and what looks like muscle loss in my biceps, i have lost over a stone in the past 2 months so not sure if it is atrophy or actual atrophy. I havent really had any twitching in my arms or others parts of body.

I have been referred to neurology but my docs says this can take up to 12 weeks, this worry is ruining my life, its all i can think about.

I know other people on this site have went through this and noone here can wave a magic wand and make things ok but can anyone advise how likely it is i do have als if ive been having these fasciculations for 6-8 weeks but am still able to do the things above even though i appear to be feeling weakness in my legs? Is this just a slowly progressing presentation of als?
 
All of your symptoms begin with feel. If you had ALS you would feel nothing, something just would not work. Fasciculations mean nothing. Good for you.
Vincent
 
The great news is that it is very unlikely to be ALS, and you have no worrying symptoms. Hopefully you read the post titled READ BEFORE POSTING. Probably you didn't as it did answer all your concerns. Maybe go and read that now, it's our official position and we wrote it very carefully.

While you wait, maybe you could do some voluntary help at a local MND clinic or at somewhere that deals with profound disabilities. It's amazing how giving to those who are truly worse off can help with you own troubles.
 
Let me just say that I agree with all of the above, and furthermore it is highly unlikely I could walk down the stairs backwards on the balls of my feet.

FEEL, yes when I hear that word I think "nope, lucky you".
 
Thank you all for taking time out to reply to my post.

I did read the sticky at the top of the page but its just i seem to have read conflicting things regarding the onset weakness.

Some people seem to say a muscle stops working overnight whereas others say its more like a slow progressive weakness and i guess im just really concerned that its the slower acting progressive weakness i have which is just going to get worse as the weeks go by.
 
The sticky is our official position.

If you read something different elsewhere we won't debate or argue it.

Hope you get some answers working with your doctors soon :)
 
Hello all, again I just want to say i appreciate everyone who took the time to read my post and especially the people who felt they could try to answer my problems/worry.

It is now several weeks since my first post and i do not have my referral in yet, nhs can be notoriously slow.

I still have the fasciculations in my legs however have noticed they are now in my feet also, prominent on the sides and arches.

Added to this i now have slight issue with swallowing, not so much when eating or drinking but when just normal swallowing.

Also i have over the past week felt some tightness/weakness on one side of my jaw/neck plus also and i know various people have said this is not a symptom but have had a hoarse throat for around 8 weeks where I constantly need to clear it to speak properly and as i speak ny voice seems to become slightly weaker, have felt myself struggling sometime when speaking to pronounce certain sounds and words although my tongue seems to be ok except for more twitches in it.

I have just become a new father so would greatly appreciate any opinions you may have and i do know you would be taking time out from either caring for someone or suffering yourself.

Just also want to say i have read the stickies tens of times and also most posts that people make who are worried they may have this horrible disease.

Thank you again.

Ps wasnt sure whether to mention the croaky/hoarse/weak throat as know that is such a common symptom of simple colds and flus and host of other non serious things however this is different from any i have had in nearly 40 years, it feels like proper weakness and just will not go away or even ease any, in fact it seems to be getting worse.
 
Sorry to hear you are still anxious and do not have an appointment yet.

You still have nothing that would make me think ALS, not even a little bit.

Twitching means nothing, feeling weak points right away from ALS, and a hoarse voice is not an ALS symptom.

The swallowing you report also is nothing like bulbar swallowing issues.

You are taking a bunch of very vague things and trying to fit them into the profile of ALS when they really are not.

So I hope you can start to focus on your baby and your life, and that you get an appointment soon for your own peace of mind. All the best.
 
Tillie, again i really appreciate you taking the time out to try to answer my questions and allay my fears.

One last query, today my tongue feels slightly numb and not sure how to describe this but almost a vibrating/jarring feeling, ive had a look at my tongue and the fasciculations seem to carry on even when my tongue is at rest in my lip- can these be signs of als? It feels further down my tongue, ie opposite end from the tip and possibly more on my left side where i have been having issues with my jaw area.

Is is the case that tongue twitching when at rest can be a major tell of als? Even if at this exact point i do not yet have any major weakness of my tongue that i can tell anyway?

Even if you dont want to answer on the open forum then i would welcome a pm.

Thank you again.
 
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One last time, read the sticky.

ALS is a disease of the brain YOU WON'T FEEL ANYTHING IS DIFFERENT.

TWITCHING MEANS NOTHING

Honest why do we have to say this over and over and over?
 
Thank you tilly, i really dont mean to annoy people on here who are obviously going through some traumatic times.

I will make a donation as after reading in depth about this horrible disease and how it devastates families the sooner funded research can help the better.

Thank you all and good luck
 
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