Neuro App this week..........concerns!

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dphk77

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https://www.alsforums.com/forum/do-i-have-als-als/42870-tick-all-boxes-hoping-best-planning-worst.html#post451730

Hi all,

I first posted on this forum 17th October last year (see link) with a vast array of symptoms that I have after time realised that the majority of them were down to my anxiety which I have got help with and I am on the road to recovery.

I have my long awaited Neuro Appointment this week and will mentioning the following symptoms;

Both my hands in my eyes have atrophied with the skin on the back of my hands have lost elasticity, look aged beyond my years and a lot thiner - I would post images but I know everyone hates that!!!

Both my thighs have lost a lot of mass and have been suffering with the urge to stretch my legs out whilst in my sleep I have read somewhere on this forum it maybe down to spasticity?

When I make an "Ok" sign with my left little finger and thumb my little finger is very weak and the ok sign easily broken I believe this is a test maybe undertaken by the Neuro.

I am getting ulnar pains in both my elbows and pins and needles in the night ( I believe this could be the cause of the perceived weakness in my little finger).

In the last 2 weeks I have been getting weird aching pains in my jaw.

If I was just having the hand symptoms (cubital tunnel syndrome) I wouldn't be so worried but with my legs also being an issue I am very concerned that the ulnar issues coupled with my legs there is something more sinister going on!!!

Things that leave me with hope is that I am having sensory issues, the fact its been 4 months since onset of issues and I haven't had any major failure can tie my laces, undo jar lids etc etc, I had a clear EMG / NCS 3 months prior and told probably BFS and the fact my symptoms are bilateral which is very atypical or at least thats what I have read.

Are my concerns valid? Or do the positives outweigh the negatives and should I be full of confidence of a positive outcome to my appointment.

Many thanks in advance for opinions given and will be in touch after my appointment hopefully with some good news and I can finally move on and put this nightmare behind me.

Daniel
 

dphk77

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Hi,

I dont know if I have posted the above post incorrectly but haven't received any replies and hardly any views compared to newer post.

It would be greatly appreciated for any opinions before my appointment this coming week.

Many thanks,

Daniel
 

lgelb

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Likely the reason for the lack of response is there is little for us to say.

Asking whether your "concerns are valid" is asking us to diagnose from afar. But with a clean EMG and as you say, bilateral motor and sensory symptoms, no one here has any more reason to suspect ALS than the neurologist who dismissed you in October.

However, you do not say if diabetes or another metabolic issue has been ruled out? You mentioned IBS, which can certainly relates to nutritional imbalances that could underlie your symptoms. Those things would be my focus with your PCP, way before another neuro appointment .

All the best.
 

dphk77

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Hi Igelb,

Wasn't looking for diagnosis from afar but I understand why it may have came across that way, think my nerves are just getting to me the closer my appointment gets.

All blood work arranged by doctor has been ok diabetes, thyroid etc.

Leave you all in peace will let you know how I get on.

Thank you for your time,

Daniel
 
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