Bulbar onset symptoms

[Mary C]

Good luck Craig.I get fasciculations and when sitting quietly trying to read they feel like a constant reminder that MND is progressing.I hope your GP is helpful today as can sense you are really worried.Best wishes Mary

[Cae1977]

Hi.mary
thanks for reply ,its now 5.10 pm and the slurring has eased voice seems more clear,I do wonder if it the amitriptyline as theys wear off after 12-20 hrs
still concerned about the swallowing, no foods comeing back up or fluids ,feels like theres a lump in the throat ,the neurologist is certain it's not mnd even without emg test ,5mg of amitriptyline also makes me feel a bit brain foggy on a morning when I'm up at 05.30 for work and it doesn't seem to lift until about 2.00pm ,like I said in my first post on this fantastic forum ,I've got no muscle weakness ,just muscle faciculation, swallowing, and sinus issues and subjective speach issues.im going to chat to gp again tommorow to see if they have booked me in for ent specialist, I absolutely hate pestering them ,never bothered with doctors until this started.

Many thanks
God bless
Craig

[Mary C]

Hi Craig, I was diagnosed in June 2020 and had trouble getting nerve conduction tests and neurology appointment due to covid. I ended up paying privately as needed to know .I take 20mg of amitryptyline an hour before bed and sleep well. I do have evenings where I slur a bit but not sure if its due to MND or the drugs. After I paid for a second nerve conduction test and neurologist I was able to hop back into the NHS with the same neurologist(I live in Warwickshire).I researched neurologists in the hospital that I thought I would come under in Coventry and Warwick areas and found he specialised in MND (Dr Anthony Thomas).It worked out well for me once I got into the NHS system.He linked me in to the palliative care team which sounded scary at first but they are great and on hand if I need advise or support. Good luck with getting the correct diagnosis for yourself soon as I found the worst stage form me was not knowing what was wrong.Best Wishes Mary

[Cae1977]

Many thanks Lynne

I'm just getting concerned ,the neurologist has said it's not mnd ,even without emg, he put me on amitriptyline when I had clinical test ,for insomnia which started back in April, again never had issues getting to sleep or staying asleep, I wonder if these are makeing my speach sound different, I only take 5mg a night 2 hours before bed ,and they help to.get off to sleep. Who knows.

take care
god bless
Craig

[Lynne K]

Sorry about your ongoing symptoms Craig and good luck for an appropriate diagnosis. Lockdown is not supposed to be stopping treatments or diagnostic investigations so I’d query that firsthand with your GP and if no joy there with the hospital management. Lynne

[Cae1977]

Hi
for last 5 months I've been haveing all over body fasiculations ,4 weeks ago I had a clinical examination with a neurologist proffesor micheal douglas ,dudley nhs group.
he could see no muscle wastage or weakness
He sent me for a full bloods check including ck levels ,these came back clear.he did not suggest emg test.3 weeks ago started haveing swallowing issues where the food is going down but I'm haveing to swallow up to 4 times for it to go down ,fluids are ok ,also had clicking sinnuses for last 6 weeks ,end of last week my tongue started feeling strained at the back off mouth and I feel that my voice is changing ,horseness and slight slurrinng , due to new lockdown comeing into place I cant get emg test ,I spoke to neurologist and he says new symptoms are not mnd ,I am worried this could be intiall symptoms of bulbar mnd.

Many thanks
Craig