Mnd

[ArfStoddy]

Hello im not sure if i am writing in the right bit but i would just want to write down whats happening to my pop, my folks are in there late 70s my pop is 79 fit and healthy still goes swimming plays snooker etc but yesterday he was diagnosed with MND he has been having tests in hospital for the last 10 days as he was having problems with numbness in his right fingers (everybody knocks the NHS but he has been treated really well nothing has been a problem they have been so thorough).
The thing is there is so much information out there about this it gets all so confusing obviously its really raw at the moment and the first thing my sister and I have done is look it all up on the net and between bursting into tears every 5 minutes and deciphering the jargon I am so confused.. my dad comes home today he is feeling great but how long will it last before he deteriorates he has always been a dozy bugger nodding off in his chair all the time is this part of the disease? Im so confused, are we in the early stages? i have a million questions but when i look i can't find the answers.

[olly]

hello.
welcome to the forum
i am curious as others will be,is numbness in his fingers his only symptom?
did they test for other causes first?
does he have hyper reflexes and emg evidence? atrophy?
he does sound fit for his age even without mnd.
if it is indeed mnd then it sounds like the very early stages,unfortunatly no one can tell you how it will develop or how quickly as everyone is different.
glad you had a good nhs experience,i know many who dont

[Danijela]

Hello. I am in the UK too. My partner has been diagnosed about 1 year ago. It took about 9 months to get the diagnosis.

Have you been in touch with MNDA (motor neuron disease association)? Their website should be a good starting point, and it will answer may of the questions you may have at this time, in a jargon free and accessible way. You will probably soon find out that no two stories of MND are the same, and that the severity of symptoms, progression and life expectancy vary between people. There also a different typs of MND, with different prognosis.

If you have not visited a specialist clinic (MND clinic) and the diagnosis has been given by a neurologist who does not specialise in MND, you can ask for a second opinion (we did). MND specialist will be able to give you a greater insight into the condition. Of course, it depends how much and exactly what the person affected with MND wishes to know.

Search facility on this forum, as well as reading posts by other folk will begin to answer some of your questions, but feel free to ask anything that concerns you specifically.

All the best, Dani