arkallen
Distinguished member
- Joined
- Mar 8, 2009
- Messages
- 268
- Reason
- Other
- Diagnosis
- 05/2009
- Country
- AU
- State
- VIC
- City
- Wodonga
Yesterday the MND Association contacted me to formally state that I am no longer a client; a change brought on by the lone voice of a Neurologist who I saw three months ago who claims my difficulties are all in my mind. This fellow has spoken personally to my team of therapists, who I feel are no longer responsive to my situation. He has made two other phone calls, and written three different letters that I know of, and states that my condition is “not progressive”. Meanwhile I’ve begun to use a BiLevel breathing machine to sleep; can no longer get through more than about half of dinner (1/3 chewing problems, 1/3 swallowing, 1/3 the sheer difficulty of lifting the food up from the plate!), I’ve turned my voice amplifier up to full volume most of each day; and I’ve finally cancelled my daily 20 metre walk because it’s just too darned hard!
Yesterday I also saw my own Neurologist for a 7th EMG study, which was normal once again. He gives no credit at all to the “functional” theory, but isn’t at all surprised that the label sticks so well once it has been applied. His advice: probably PLS, wait for the next development, come back in six months, and find a new team of therapists who haven’t been contacted by the troublesome doctor.
I get the feeling reading on the Forum that I’m far from the only person who finds the journey to a confirmed diagnosis a difficult one, fraught with uncertainty and angst.
(I’d hate any of the doctors or therapists to read this, as I still appreciate each of them and am grateful for their assistance, even though it’s gone a little off track).
Well; that’s my grumble for the day...
Yesterday I also saw my own Neurologist for a 7th EMG study, which was normal once again. He gives no credit at all to the “functional” theory, but isn’t at all surprised that the label sticks so well once it has been applied. His advice: probably PLS, wait for the next development, come back in six months, and find a new team of therapists who haven’t been contacted by the troublesome doctor.
I get the feeling reading on the Forum that I’m far from the only person who finds the journey to a confirmed diagnosis a difficult one, fraught with uncertainty and angst.
(I’d hate any of the doctors or therapists to read this, as I still appreciate each of them and am grateful for their assistance, even though it’s gone a little off track).
Well; that’s my grumble for the day...