questioning MND diagnosis

[magpie]

Hi new to the forum my husband has been diagnosed with mnd and its been a confusing sad frustrating time we are to return to the neuro brain mind centre in two weeks for the formal diagnosis. I would like to ask ; my husbsnds symptoms stated 12months ago in right hand weak grip very limited use now but he can still flex his bicep muscle the left arm is going down the same track but still can flex bicep muscle has cervical spondylisos, ulnar nerve entrapment in right elbow , mild disc compression c5 c6 severe stenosis left and right , large loose bone i think that might be the cause of compression on spine had a very bad push bike accident hit by a garbage truck from behind 8 years ago also whip lash broken pelvis hip had an slight break emg has denervation and chronic denervation fibs and fasc also had an aunt die of mnd even though she died being able to comb her hair feed herself so she obviously could swallow etc unless she died from something else not sure about that i feel they the neuro and an neurosurgeon have diagnosed too quick because of the hereditary link could there be room for a misdiagnosis i think i might be in denial excuse the long story

 

[magpie]

Re: Hi everyone, just a quick question

forgot has brisk reflexes in both arms and bedside muscle strength testing was all 5 out of 5 except right arm 3 out 5 no tongue fasc fasciculations in arms and legs also lower back disc irritation

 

[Atsugi]

Magpie, I moved your post to its own thread. Please don't post your question on another person's thread.

 

[affected]

Who diagnosed him?
Was it at an MND clinic, by a neurologist specialising in MND?
You said neuro brain mind centre and I wasn't sure if you meant that or MND centre.

Have you spoken to MND NSW? They are wonderful and very helpful. If you haven't been diagnosed by an MND specialist they can help point you in the right direction.

Sorry it is a scary time.

 

[magpie]

Re: Hi everyone, just a quick question

It was an mnd neurologist at mnd and reasearch centre in sydney thanx for the reply queen of hearts im very new at this i might be doing it all wrong sorry i posted in someone else's thread thanx mike for the direction

 

[sleepy]

Hi Magpie

I'm new at this and unqualified to offer advice based on symptoms, but you are entitled to get your questions answered and feel certain that the diagnosis is right. I'm sure it will be a roller coaster 2 weeks for you both. How does your husband feel? Does he suspect something else? use these 2 weeks to get all your questions ready. if this then ? and if that then ? they may or may not be useful on the day but it might stop your thoughts from spinning out of control. Thoughts are with you

 

[Green Queen]

Magpie, did you see Matthew Kiernan? He was recommended to us by Prof John pollard who is also in Sydney.

You're not doing anything wrong, just learning the ropes.

All the best with the appointment.