ALS Clinic appt went well

[shelleynshaggy]

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).

[Blackpool]

So glad you got some answers and it isn't Als.Enjoy Halloween and thanksgiving.

[halfin]

Hi Shelley - We were at the local ALS support group meeting yesterday, and there was a caregiver there whose husband had also been diagnosed with dementia along with ALS. This was several years ago so it has been going on for some time. It has been a real problem and challenge for her struggling with the two kinds of problems, and I am sure you are going through a similar situation. I got the impression from what she said that the dementia had kind of calmed down and stabilized, and she had learned to deal with it. Still with ALS there is the progression of symptoms which is always hard.

Hopefully with your husband having only upper motor neuron involvement, you will see less progression and less disability. As I understand it this variant is often called Primary Lateral Sclerosis, although for legal reasons it can be advantageous to refer to it just as MND or even upper motor neuron dominant ALS. So the terminology may be a little different depending on the context. But generally the prognosis is much much better than for regular ALS. I hope it works that way for you and your husband.

[Katie C]

Halfin.. my guess if they are dealing more easily with the FTD is that they got the right combination finally of anti-depressent and anti-anxiety meds going. Glen got a presecription for something before we went on vacation that was to help him sleep but had some anti-anxiety components and I can already see some improvement... neuro at UCSF has suggested an increase in anti-anxiety medication, so we'll see what happens next.

[hopingforcure]

Halfin,
I was wondering how you made out today? You gave a good explanation of the variant her husband is probably dealing with.

[indigosd]

Shelley, so happy that you feel better after the appt! I wonder if the diagnosis of MND/FTD will disqualify him for SSDI? I can't remember now if you were looking into SSDI. If it doesn't progress that is a good thing!

[shelleynshaggy]

actually that is the diagnosis we put on his application - that is what his med records said at the time. They are still going to monitor him for ALS to see if his muscles atrophy and continue with the other tests. ALS syndrome is still on his records also.