Recent content by hopeagainsthope

Weight has been heavy on my mind for past 6 months! Excuse the pun.So an interesting topic. Weight gain been a hallmark for me. Previously normal weight, I am now a stone heavier and that's eating as before. I have been told to eat calorie controlled diet, i asked one of my neuros about...

Sorry forgot to say, welcome Andirai. I agree with Shiftkicker, I am finding that it mentally it gets easier for me as time goes on. Each day I just do the very best I can, delighted if I can achieve my daily goals! Subtle daily changes remind me to appreciate each day with what I can do...

Interesting....my Top London Neuro, said PLS is far more common than people think. The 90% figure is not what I have been seeing in all my trawling research. I guess it depends where you look,some articles even suggest normal life span for some.Even at local level I have been told by my neuro...

Wow! Kevin you are a breath of fresh air thank you for being so encouraging. I think sometimes one can feel daunted by some posters! But you have been spot on in your assessment. :idea:

Interesting link. What do people think about this? Swansea University scientists discover possible ALS treatment - BBC News

Hi Liz So sorry you are having such a tough time. You say;"but I haven't been sent to PT by any of the neurologists I've seen yet". I was really shocked by that! I think this is essential. I suppose once a diagnosis is certain, then these things will get sorted. Next year for you seems a long...

Thank you! Yes, I have had great help from the support team here in Essex. I felt sad you got such a harsh reply on the forum, I don't know why people are like that. Esp as it was your first visit. Have you joined the UK MNDA forum? I haven't yet. There is also a very good PLS private forum that...

Hi Pete, welcome from another uk plser, I know Sussex well! My work HQ is Haywards Heath. Hope you are getting as good Nhs care as I am.

From what I understand, Clonus is UMN in origin ;"Spasticity is increased muscle tone, hyperactive stretch reflexes, and clonus (an oscillatory motor response to muscle stretching)". I have normal emgs currently, with an irritating amount of Clonus in lower limbs. Putting on socks, shoes etc...

Hi everyone, I just thought I would update you on my visit to the MND Specialist up in London. The whole experience was a good one and I have huge admiration for these tireless professionals. I think my Consultant is a brilliant man! Anyway.... back down to earth again; he believes it is highly...

Kathy thanks so much for reply. Especially as it is hard for you to type. I was so touched. Gems of info there which I shall ponder upon, thoughts no longer troubled as much! What a great thing to be participating in with the study you mentioned,to help others at the same time. I will certainly...

Fiona I can't tell you how helpful that reply was! Thank you so much... I often hear emg shows changes before one knows oneself, so it just does not make sense that these changes should be so soon after. I will let you know what they say at the National hosp once I am seen. These forums are so...

Hi Everyone.I am waiting to be seen hopefully in the not too distant future at our big Neuro centre in London (horrendous waiting list), as apparently I am a mystery:cry:. In the meantime, I am now noticing that both my legs are from knee down are changing shape. The shins have flattened out...

This really helps me understand the whole picture re brain in UMD as I thought it was more of a software issue than actual destruction of the motor neurons in the brain. So that is even more sobering. I have fought my corner re stress after event, as I know all my family just cant believe what...

Thanks Fiona, for this update, it is incredibly helpful and selfless of you, as it does indeed provide valuable clues for others. I am so very glad you are staying "upper", but as you say still not good. It was so interesting that you mentioned "somatisation". My family have been discussing this...