Some help required

[Nikki J]

We are sorry for your problems but you have been cleared of ALS so this is not the right place for you ( lucky you)

I hope you can find a road to the care you need.

If you were given an FND diagnosis without positive findings indicating FND that is wrong. There are experts in the UK on FND ( more than her) and you might want to see one. If they rule out FND then you have a stronger case to pursue other diagnoses. I know UK FND patients have had success in being seen out of their cachement areas if there is no local resource

I don't think you need an MND center but your statement they do not exist in the UK is incorrect. I don't know your area but for the record I know ones in London ( Kings) ,Sheffield, Oxford and Cambridge ( Addenbrookes). I know there are others. I have been to the Oxford MND center and several members of my family are followed at Addenbrookes

 

[Studavey]

All,
Hadn't realised I wasn't allowed to comment on the main board until formal diagnosis. My apologies. I don't need anyone else to tell me what is happening however, I'm informed enough to know this relentless progression of muscle atrophy, weakness and twitching (and joint pain!) Is indisputably MND, given everything else has been ruled out.I have my follow up with the neurologist on 14th December.

Just to say I'm not talking this lying down. I have been buying in lots of supplements etc I've read about through countless hours of research. It allows me to feel like I'm doing something if nothing else.

More importantly, I am managing to get Orap, which is the generic pimozide. I have to go for an ECG first on Monday to make sure my ticket is ok, but results permitting I will be able to get it which I will be staying up from 1mg to eventually 6mg depending if I can tolerate it. Know I can't post on the main board as yet but given recent small study in Canada that showed it had an impact over a very short time period in humans (enough to move to phase 2) I though I'd keep you all updated on how I get on.

Note I will be measuring in terms of muscular atrophy and perceive weakness, obviously the latter is subjective to an extent but the former very much isn't and I have been taking detailed measurements for the past three months so already have a well established base and progression myself.

Two things to ask - does anyone know if it is ok to have the flu jab with mnd? My son got a cold about three weeks ago, I picked it up and my voice hasn't been the same since. Extreme hoarseness especially in morning and late at night.

Next - I have muscle loss in all four limbs and face. My muscle diameter at the largest point of each limb muscle group has only went down between an inch and two inches depending on region. However, my muscles seem to be wasting from the joints inward much more. I didn't realise this was how it would go down. Is that everyone's experience? It means nearly all of my joints have weakened now to the point it is significantly impacting me. I also experience extreme stiffness in joints and jaw in the morning as well as a very tight throat when eating, reduces a bit during the day. Same for everyone?

Best
S

 

[lgelb]

If you had MND, which no one thinks you do, a flu jab would be fine, as is true in most all neurological disorders apart from Guillain-Barré Syndrome. But do ask your neuro if you are unsure.