shelleynshaggy
Distinguished member
- Joined
- Sep 2, 2009
- Messages
- 280
- Diagnosis
- 08/2009
- Country
- US
- State
- OH
- City
- Brunswick
Well after our 4 hour appointment I feel more confident. Right now the diagnosis is MND w/FTD. We saw 2 different doctors at the clinic - both were terrific. Real nice and really explained a lot. They said Jim may still develop ALS - but as of right now there is no muscle invovement.
They answered my ALS vs MND question. ALS affects both the upper & lower parts of the neuron (the upper controls nerves, lower muscles - if I understood correctly) MND affects the upper portion of the neuron only. - There was more explanation then that - but I am pretty sure that is where my eyes gazed over and he lost me in technicalities. The short of it is - Jim doesn't have muscle atrophy as far as they can tell. It may or may not progress to ALS.
Jim will have a PET scan for his brain, had 7 tubes of blood drawn for various test, received a medication to help with his rigid muscles and 4 supplements (2 vitamins, creatinine and 1 other I can't remember right now. I still have to go pick that up.
The ALS clinic suggested we still see the other neurologist who will monitor the behavioral part/dementia and the ALS Clinic will manage the MND - working together of course.
Now we wait until December (again).
They answered my ALS vs MND question. ALS affects both the upper & lower parts of the neuron (the upper controls nerves, lower muscles - if I understood correctly) MND affects the upper portion of the neuron only. - There was more explanation then that - but I am pretty sure that is where my eyes gazed over and he lost me in technicalities. The short of it is - Jim doesn't have muscle atrophy as far as they can tell. It may or may not progress to ALS.
Jim will have a PET scan for his brain, had 7 tubes of blood drawn for various test, received a medication to help with his rigid muscles and 4 supplements (2 vitamins, creatinine and 1 other I can't remember right now. I still have to go pick that up.
The ALS clinic suggested we still see the other neurologist who will monitor the behavioral part/dementia and the ALS Clinic will manage the MND - working together of course.
Now we wait until December (again).