Officially I am now Victor Meldrews sister,

[Suefromwakey]

I seriously cannot blxxxy believe it, for best part of 2 years we have been told to expect a MND diagnosis for my husband...............last week the consultant said no its not MND "so that's good" its probably Myositis..............this gave him a real boost to be honest, she's phoned today and said no not Myositis as his CK levels were not indicating as such,

She told him it was the stupid statins he had been taking which he has now stopped

So finally she's referring him to MND specialist but Leeds and not Sheffield, my husbands choice as Leeds is nearer and he needs hospital transport now and for the future,

Its pulled the rug from under him I fear, how can this be? - he's had 4 nerve tests, MRIs, Ct I think, Leg Biopsy, Lumbar Puncture and many many bloods,

nothing changes with the nerve tests and hes reasonably ok from the waist up although his arms are failing a bit and his breathing is laboured, its all in the lower half

Frustrated of Wakefield - Victoria Meldrew

[Ellie]

I love that you're maintaining a sense of humour, Sue / Victoria - I guess the alternative is to weep, which you have probably done, and some..

Do you know what, I'm just glad he's going to a specialist clinic, irrespective of its area of neurological expertise.

Hope husband's appt comes through very soon, you could always ring them in a few days.

Love Ellie.

[Banned]

I wonder if he has a dodgy gene in there predisposing him to MND?

[Suefromwakey]

Graham is that something they will have looked at ?.........no family history of anything like this

[denise]

Oh sue!
I think you are both going through it. What a mess. So once again a wait for another appointment. Has he been given any meds other than the statins? Does make me think there are others out there with a similar experience.
all I can offer is a big hug and hope something is sorted soon.
how's it going with the builders?
Denise xxx

[Suefromwakey]

He's been given no meds - he came off the Statins thinking they were causing this mess, the builder will finish today - the wet room looks really nice, now to clean up, dust everywhere!

[denise]

I'm glad something has gone right

[Suefromwakey]

I am a wreck today, as a result of all the dust from the builders etc I started deep cleaning front room and my son had bought me a life size cat which sits on the hearth rug, I've never turned it over before and it says the date which was my birthday 2017 and "cheers for the years, Love Stuart X" I am in agony my boy I just want him back.......now this GGGRRR

[denise]

That must hurt so much. With all the stress and now that I'd be bawling my eyes out. I bet you are too.
I hope next year is going to be a bit clearer. I know it's not going to be great but it's just been a dreadful year.
what a lovely thought putting that on the bottom.
love and hugs Denise xxx

[Lynne K]

Sue, I’m glad that things are moving on the MND clinic front despite the travel issues. I hope that when the time comes something will be offered to make those journeys doable. It all must be so hard to bare. It’s good news your wet-room. That’ll be a huge help. Hugs 🤗, Lynne

[Banned]

MND is so very hard to diagnose as we all know and that is why I sense that a gene test should compliment the process. There will be a dodgy protein being manufactured in every one of us at some point, that's what MND is.

I too have no family history of MND but the researchers were able to tell me that I have a gene defect that has most likely caused my MND.

[PeterPan]

Hi Sue, I don’t know what to say really... But I thank my lucky stars that I was given a formal diagnosis of MND six weeks after my first discussion on the subject with my GP. It’s the worst diagnosis possible, but it brought a great deal of relief and closure. It’s also allowed us to start planning and organising for a very different future, to start work adapting our home, and to claim PIP. The care I am getting from the team at Queen Square is remarkable given the state of the NHS and I count myself as very lucky. Not knowing must be far worse than knowing, and you have my deepest respect. Maybe worth adding that I was advised to stop taking statins while tests were being done. I then insisted on starting them again once the diagnosis was confirmed. I figured that a third non fatal heart attack on top of MND wouldn’t be a great outcome. Best wishes to you both.

[richard]

Hi PeterPan
i am also under the Queens Sq team and they are superb. Like you I was told or rather asked to stop taking statins until all the tests were clear. I then went back onto them.

Richard

[denise]

How are things sue?