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SuzieK

New member
Joined
Nov 24, 2015
Messages
1
Reason
Learn about ALS
Country
UK
State
Antrim
City
Belfast
Hi Folks,

I'm sorry to bother you and take up your time but I'm getting very worried and hoping you can give me your opinion.

I am from Belfast in N Ireland and am 35 years old.

About 3 years ago I got this 'numb' feeling in the toes in my right foot. I say numb but it wasn't really numb, felt weird and disconnected but wasn't numb as when touched could feel as normal. Gradually this spread to be whole left foot and foot felt increasing stiff. Again I say stiff - feels stiff and heavy but movements such as toes up and down are normal just feel weird. Sorry that is a terrible description but it is hard to describe. It is much worse when I am in bed at night or lying down.

About year and a half ago it spread to my right foot which now feels same as the left and started getting again 'numbness' ie weird feeling And tingling in tops of my fingers and thumb. Hands now also feel stiff. I think my fingers look like I've had a bath - lined. Hands are not as stiff and weird feeling as my feet. Weird feet making it strange to walk on at times and I feel my left leg is stiffer. My extremities particularly my feet are always feel cold. I don't think I have any weakness. Though at time the tingling etc in my hands makes very fine motor skills like turning pages in the book a bit difficult though I can do it.

I get frequent cramps in my legs but my mum suffers from poor circulation and was troubled with cramps for which she takes quinine sulphate for this.

My Gp gave my blood tests for diabetes, thyroid et - all negative.

Referred to neurologist - got mri - absolutely nothing. Suggested nerve conduction tests which I shd get in new year. Nhs here is slow. mentioned motor neurone (als) to neurologist but he didn't think it fitted the presentation. Reflexes etc normal. I didn't feel as stiff then.


I am a couple of stone over-weight and not as active I should be. I work in office job all day and it is quite stressful. My diet is not good. In case these are factors.

I am so so sorry for bothering you with this but I have 5 beautiful children and the thought of not being around for them is horrific. I have never suffered with anxiety etc but so upset and think I have mnd/all.

I am genuinely sorry for bothering you with this. I have never posted on the internet before so quite daunting. I know from reading mad/als has different presentations for different people but wondering if this sounds like it is. The not knowing torture has almost become worse than any diagnosis.

Thank you so much for your time.


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Suzie, what you described is so very, very NOT like ALS, that I'm sure you're going to love your kids for a very long time. Listen to your doctor and enjoy your beautiful countryside.
 
Suzie
Mike is very knowledgeable about this dreaded disease. If your doctor says no and Mike can't see it in your description, go with it.

All the best for the future testing.

Janelle
 
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