Heartfelt thanks and request please.

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Sidney

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Hi. Firstly thanks to those who gave advice to me 9 months ago at the start of diagnosis. Igelb, Atsugi and Tillie particularly your compassion and knowledge helped no end. I was initially diagnosed with BFS but after 3 clean Emg's I have had a setback with a fourth. Denevrvation was found in the peroneal and abd hallucis nerves. I have pes cavus high arches now and foot atrophy .

The new diagnosis is ' distal sensory motor autonomic axonal poly neuropathy '.

I fasiculate constantly and am waking frequently at night with nightmares and breathlessness.

I still feel this could turn out to be Als and am terrified. I'm 57 with beautiful Grandkids and just can't deal with this mentally.

I wondered if any of you have experience with this diagnosis becoming ALS?

And once gain thank you for your selflessness in putting your grief and pain aside to run this site.

Cheers Sidney
 

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Sidney the good news here is that the diagnosis you have may involve nerves but is NOTHING like ALS, nor at all related to ALS.

So you still have no higher chance of this 'turning out to be ALS'. Actually I think I could say the chances of that happening have dramatically dropped even further.

Your EMG finding seems to match your symptoms.

I know it's worse than BFS but it is a far cry from ALS. I hope you can put that fear to rest.

All the best.
 

Sidney

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Cheers Tillie. This is why I post here. The advice is so logical but when fear takes over even a sane rational 57 year old bloke can lose the plot! I suppose I've read a lot of cases where initial diagnosis and Emg's do eventually become Als. I did read one where poly neuropathy as I've been diagnosed with now did become Als. I suppose I still live with that and there's nothing I can do.

Cheers Sid
 

Sidney

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Just to be a little more clear I am worried about foot drop. My toes are numb and my Achilles hurts. I believe in foot drop the Achilles tightens, the arch raises and the toes drop. This may be due to the poly neuropathy but alongside fascics etc I can't help thinking it points towards Als foot drop. Not happened yet admittedly but this constant year long apprehension of what may happen and the fact my diagnosis has changed is really disconcerting.
 

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Foot drop can happen with other conditions too.

With ALS, you don't feel a thing, suddenly your foot simply won't lift up and the time you notice it is when you start face planting, yet still don't feel any different at all.

Really your change in diagnosis is a positive and only points further away from ALS
 

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Cheers Tillie.I'll go into today much more positive
 

Sidney

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May I also ask for Igelb's and Atsugi's input please? I value all your opinions and it will make me feel a hell of a lot better if you are all aligned. Cheers . Sidney
 

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Sidney,
Not sure what case you are referring to but I have no reason to believe a dx of polyneuropathy, which is very common in middle age and suggests that reducing simple sugars, if applicable, could help, could/would be changed to ALS.

Don't live in fear -- get counseling or other help for the anxiety, which I think you know is unjustified but nonetheless real to you. For the breathlessness, you might consider a fan in your bedroom and adequate humidification in London's climate.

Best,
Laurie
 

Atsugi

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My Dad once told me he complained that he had no shoes, until he met a man who had no feet.

You've been diagnosed with a neuropathy and had several clean EMGs, Sydney.

Still, you're asking terminally ill people to comment upon your lack of shoes.
 

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Entirely fair and sincere apologies
 

Sidney

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In my defence Mike I have always been respectful and sensitive to everyone on here. Please see my opening post. I have had a bad EMG showing denervation. Next week I see a Neuropathy neuro AND an Als expert as they're not really sure.

Anxiety admittedly plays a part while there is a possibility of ALS-and there is.

I hope I posted in the correct part of the forum and posted with respect.

Thank you for your comments and I do understand the frustration with people like myself but as you know getting answers on diagnosis takes a long time. I'm a year in told I had a poly neuropathy then told fasiculations aren't usually present with that and to see an ALS specialist alongside a neuropathy specialist.

Thanks for your patience and I hope you will allow me to ask the odd question as I've said before I value your opinion.

Cheers

Sidney
 

GregK

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My onset was foot drop.

It was nothing like you describe. Tillie described it accurately.
 

Sidney

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Thank you Greg.
 
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