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Dottygirl
20th April 2011, 22:57
Hello

I'm posting about my lovely Dad, Don, who has suffered from a progressive muscle-wasting condition for the last 17 months. He had lots of tests in the first 6 months and we were told it was not MND, but some undiagnosed condition that would possibly present in a similar way.

Dad's mobility has been the most progressive element to his condition: he is now in a nursing home, cannot use his legs or arms (can't even control his elec wheelchair of late); he is losing strnegth in his torso and finds it very hard to straighten himself and now his neck and shoulders give him much pain and discomfort. He is waiting for a new wheelchair assessment.

Just 3 weeks ago at his latest appt with his neurologist, he was finally told that they now are looking at MND as a possible diagnosis. His symptoms are very similar to those I have read about of MND patients, the only difference being that - so far- his throat and swallowing ability has not detertiorated at the same rate as everything else. His nurses and I have noticed a slight slurring recently and he does not enjoy his food as much. Swallowing takes more of an effort but it's only a gradual change compared to everything else.

We were referred to our local hospice some time ago and up until very recently we had a 'generic' nurse assigned to us who visited dad on a regular basis. A few weeks ago another nurse took over his case, one who is specialised in MND and other neurological/muscular conditions. She has been lovely and has asked for referral to Birmingham for a swallow and breathing test.

Will this result in a 'definitive' diagnosis, does anyone know? We feel in limbo and have done ever since this started, and I want to do the best for dad but feel like I am groping about in the dark. With a diagnosis we could at least expect some support from places like this forum and the MNDA, but even posting here feels slightly 'fraudulent', almost.

Any ideas, advice or even a friendly word would all be most welcome.
Thanks :)

ScrummyMummy
20th April 2011, 23:36
Hello Dottygirl. You poor thing . This disease is bad enough to deal with, without all of the additional strain that you have been experiencing. I have joined the forum, looking for Answers, like you I suppose. My mother was finally diagnosed the MND in. September, following a year of unsuccessful surgery to her right hand for wrongly diagnosed Trigger thumb then Carpel Tunnel syndrome.
She only really got diagnosed after a process of elimination left no other possibility. By the time she got to see Dr Talbot at the centreof neurology in. Oxford she showed visible muscle wasting in her right hand and wrist and was dropping her foot when she was walking.
Since then, she had become weak in her other hand , particularly her back and shoulders and legs. Recently I have noticed a lack of enthusiasm to eat and her speech getting mumbled whenshe is tired. It seems to have taken over her whole body so quickly!
It sounds as though the doctors have been rather kind to your Dad you know. The day my mum got told, she was crushed and actually got worse, I think, after the shock. I think that noone wants to be told that they have got MND and the longer you go on believing that it is something else, the better. At least there is some hope.
I am deeply sorry for your circumstance and know the pain you must be going through. We are all struggling to cope ourselves. Good luck.

Robin142857
21st April 2011, 15:17
Hi Dottygirl,
I really feel for you and your family. It really is taking a long time to get a diagnosis, and to have that on top of everything that goes with MND is tough. If it helps I was told by my neurologist that there is no direct test for MND and that diagnosis, once everything else had been eliminated, was based on clinical observations and nothing else. I think he is the only person who can give that diagnosis now unless you opt for a second opinion. Since that would incur more examinations and time and effort, perhaps you'd be best to consult your GP before deciding to follow that route.
The fact that you now have a MND nurse makes me think that the diagnosis may alread have been achieved. Maybe you could ask the neurologist directly one more time or enlist your GP and get him to ask for you? Or maybe the MND nurse can tell you more?
Good luck. I hope to see you adding to this with positive news very soon.

Dottygirl
21st April 2011, 18:56
Thanks for your kind replies.

ScrummyMummy - sorry to hear about your mum. I know what you mean about the diagnosis influencing how they physically deal with the condition. It's a gutting thing to know.

Robin - thanks also. I actually got Dad's GP to write a letter for his file at the home to say whether he thought Dad had had an official diagnosis but he couldn't say for sure as the neurologist is only exploring it as a last resort I think, so we have to wait for the breathing and swallow tests to be done.

I think if I had the energy to be angry about it I would be, but I don't really know who I would be angry with! It just seems very unfair that Dad has been missing out on valuable advice and support from the MNDA all this time whilst we wait for results from test after test, and in the meantime he has been completely robbed of his mobility and the life he had before this started happening.

Our PCT seems very slow to respond to his needs: his current wheelchair gives him no neck and head support anymore - or at least the kind of support he now needs - and he is in much discomfort, and yet they cannot see him until 5th May and even then they want him to go to a clinic at their HQ rather than a visit to him at the home (which we were told would take twice as long). My husband and I had to take it in turns to hold his chin up today after his neck got too tired to hold his head up whilst we waited for his carers to put him back to bed. It was only 1pm but he was sooooo tired. Bed is the only place he can get his head and neck supported properly at the moment, and this brings its own problems: his chest isn't good and there's the chance of pressure sores even more now.

I think maybe with an official diagnosis he might have more chance of also successfully getting ongoing NHS funding, which he's been denied up to now.

Ho-hum, we just have to get on with it though I spose. Dad, as so many MND sufferers seem to be, is resilient in the face of awful adversity; still has time for jokes and a smile for his beloved granddaughters :)

Graham
21st April 2011, 22:55
Hi All,

What you are missing is the option to take Rilutek.

By the time the dx is given, a lot of precious time is lost in halting the disease.

2 years 4 months after symptoms first started and when I was badly affected, I was told I could have Rilutek!? This made me angry.

There is apparently no test for MND, but would a response to Rilutek count? Just seems to obvious!

Best wishes

Graham

computatec
27th April 2011, 09:15
It looks as though your Dad is being treated as an outpatient so the diagnosis can take forever.

Once there is a suspicion that a patient has MND admission to a specialist hospital for a week of testing is the only way to find out. I saw a Neurologist who, after the first consultation, referred me to the Royal Free hospital in London. At the end of a week of tests it was as certain as it is possible to be that I had the ALS form of MND. Before discharge I was informed that, due to the seriousness of the diagnosis, a second opinion was to be obtained. This was done by doctor Richard Orrell, a specialist in this disease who agreed with the hospital diagnosis.

There are no markers, or things to see under a microscope to show if we have the disease or not not, so that is why the diagnosis is clinically based, meaning only by expert opinion,

Clive

sarahezekiel
5th May 2011, 19:08
Like Clive, I was also admitted to the Royal Free hospital and given a definite diagnosis after one week. My neurologist seemed pretty sure that I had MND after my first appointment with her.

Dottygirl, I wonder whether your dad could be admitted to a good hospital and finally get a diagnosis of something? It's appalling that he has to wait for equipment and can't be supported by anyone. I wouldn't worry about not getting Rilutek. I think you should use this forum though! Your dad has MND symptoms, so you may find the advice here very helpful. I hope you get an answer soon. Best wishes to you and your dad.

Sarah

MND Connect helpline