Hi from Peter in Nottingham

[PeterDaviesNotts]

Well saw the Neurologist on Tuesday. He did what I thought was quite a quick exam and noted that I had atrophy in the left calf although he didn't state he found anything else including reflexes and clinical weakness. However I know that my left calf and foot is weaker than my right. He stated he is not concerned and would tell me if he was, stated he hadent seen this kind of presentation in 14 years. However he did order MRI of the back and leg and EMG. I do feel that with the constant fiblirration in the leg, the twitching, some cramping and loss of strength that it will be found, just it is early days. I'm probably in there before allot of others as I noticed the atrophy just from the knee accident. Anyway will keep you updated, I hope you all enjoy your bank holiday weekends x

[PeterDaviesNotts]

PeterDaviesNotts sorry you’ve got covid. Hope your not feeling too bad! Shame about appointment for today. Hope you’ve been able to rearrange. I’m from Warrington. The spire hospital is lovely. Wishing you a speedy recovery from covid.x

Thanks for your wishes, yeah it's not too bad at all so far. Went for the Spire as the Consultant is a MND and nerve specialist, bit of a distance but worth it I guess. Re arranged for 2 weeks time x

[Piglet]

PeterDaviesNotts sorry you’ve got covid. Hope your not feeling too bad! Shame about appointment for today. Hope you’ve been able to rearrange. I’m from Warrington. The spire hospital is lovely. Wishing you a speedy recovery from covid.x

[PeterDaviesNotts]

So annoying, tested positive for Covid last night just in time to make me miss my Consultant appointment today. Sods law! My legs although strong when worked out with farmers lunges and calf raises get such a tired and heavy feeling after using them for a bit just doing daily tasks. Also sitting still for a while it's like they take time to wake up and feel unreactive. However after sleeping and getting up they and the rest of my body is fine!

[PeterDaviesNotts]

Understood, thank you for your replies guys, it's hard to know what's going on at the moment, like you have said many times the Consultant will make things clearer

[Ellie]

That's odd, my face muscles even shake sometimes when I smile or make large facial expressions, have had facial cramping too.

It may very well be "odd" to you Peter but, no matter what you believe, it is NOT a bulbar/MND symptom.

[PeterPan]

PeterDaviesNotts It’s not odd Peter, you don’t have a diagnosis of MND. You might have any number of alternative conditions. Please take one step at a time

[PeterDaviesNotts]

That is NOT a bulbar symptom.

That's odd, my face muscles even shake sometimes when I smile or make large facial expressions, have had facial cramping too.

[Ellie]

Have others with Bulbar onset found it tiring and painful after a while to smile, that's my main Bulbar symptom

That is NOT a bulbar symptom.

[PeterDaviesNotts]

Now found a MND specialist in Warrington Spire Hospital, Dr Sathasivam. Due to go in next Thursday.

Just as well as NHS appointment turned up today and it's not till 25th July!!

Have others with Bulbar onset found it tiring and painful after a while to smile, that's my main Bulbar symptom, swallowing still relatively fine and speach I can still shout and sing, maybe a little forced?

[PeterDaviesNotts]

People cannot subjectively measure their own strength...

Re Consultant Neurologist: just a suggestion Peter but, if you're paying for a private consultation, wouldn't it make more sense to travel further and see an MND Specialist? My feeling is if Dr P, an MS Specialist were to say "no ALS", you'd say, "well he cannot possibly know, he's just an MS Specialist" and, in your mind, the consultation will have achieved nothing.

FWIW: stop "measuring the calf and testing strength regularly", it's classic anxiety behaviour and its only outcome will be to increase your anxiety levels = more twitching = more anxiety and so on.

Be kind to yourself!

Thank you Ellie you make a good point, I have shockingly had no response anyway from this specialists secretary so I'm going on the hunt again. Like you say it's worth travelling to find the right one!

[Ellie]

I'm measuring the calf and testing strength regularly, so I can see I trend before the referrals.

People cannot subjectively measure their own strength...

Re Consultant Neurologist: just a suggestion Peter but, if you're paying for a private consultation, wouldn't it make more sense to travel further and see an MND Specialist? My feeling is if Dr P, an MS Specialist were to say "no ALS", you'd say, "well he cannot possibly know, he's just an MS Specialist" and, in your mind, the consultation will have achieved nothing.

FWIW: stop "measuring the calf and testing strength regularly", it's classic anxiety behaviour and its only outcome will be to increase your anxiety levels = more twitching = more anxiety and so on.

Be kind to yourself!

[PeterDaviesNotts]

I'm trying to put your above statement in context, which is why I wondered if your GP found anything which lead you to be "99% sure" you have ALS, or is that your personal assertion: were any weakness, function issues or deficits found by the GP?

I hope you don't have long to wait to see a Neurologist.

Hi Ellie, its mainly the fisculations/constant tingling type cramps in the left leg with some strength loss. GP said she could not say either way but both GPs were quick enough to refer me. I'm measuring the calf and testing strength regularly, so I can see I trend before the referrals.

The neuro I have selected is mainly MS focused but there are not many around here with MND listed. Maybe NHS will find a good one 😉

[Tony]

Hi Peter. In the best possible way I hope you don’t need to remain with this group but if you do you are very welcome. While ignorance is bliss it seems as though you are already well informed so the quicker you get a diagnosis one way or the other, the better. We’ve all got many similarities and many differences such is the nature of this condition, but one common theme is support for each other and that’s very precious. Best wishes to you.

[Ellie]

I'm 99% sure I have MND/ALS.

I'm trying to put your above statement in context, which is why I wondered if your GP found anything which lead you to be "99% sure" you have ALS, or is that your personal assertion: were any weakness, function issues or deficits found by the GP?

I hope you don't have long to wait to see a Neurologist.