Now the bad news

[Mike in Maine]

While the VA was conducting the intake they are saying that I have to many LMN signs for this to be PLS and that it is UMN Dominate ALS. With what my doctor had been saying and what I have been seeing it came as no shock, I still consider myself very lucky cause progression is slow, almost a snail’s pace. Hopefully it stays that way, we’ll see. This disease is full of surprises; it seems you never can guess what is next.

Mike

 

[Nikki J]

I am sorry Mike. You are right though that UMN dominant ALS tends to be slow and you have every chance of being around for some of the good things on the horizon for ALS.

 

[LouLou]

Sorry for this news, Mike. It sounds like you have good doctors at the VA where you are. You are right about the surprises with this disease. We can just take one day at a time and hope for the best. You're in my thoughts. LouLou

 

[Drewsmom]

Mike,

My husband got the same news last week. Lower motor neuron signs in all areas. Dx changed. We weren't surprised either.

Hang in there!

 

[affected]

Mike I so hope you continue very very slow progressing!

 

[Nuts]

I'm so sorry about your new diagnosis, Mike. Here's to a slow progression...

 

[Clearwater AL]

Hey Mike, sorry to read that. Now... at your next VA appointment point blank ask your VA Neuro if you can now submit a claim for full ALS benefits that he/she will sign onto.

 

[Trippy]

Hi mike,

Not necessarily bad news, just different news if you're progressing slowly since we're all somewhere on the continuum I guess. I'm curious what are your many lower neuron signs? Is it an abnormal EMG or just weakness in some areas (which is also common with PLS). Good luck with the pump, I'm glad to hear it helped you so much.

Kathy

 

[MaxEidswick]

>cause progression is slow, almost a snails pace. Hopefully it stays that way

me 2!

Hang in there, Mike!

 

[IhavePLS]

Hi Mike,

Sorry to hear about the change in diagnosis. I'm glad to know, however, that your baclofen trials have gone well.

Mike

 

[4tloml]

Sorry to hear your bad news, Mike. Great big wish for you is that it will continue it's s-l-o-w progression.

 

[Janie H]

Sorry Mike, at least it is slow progression, you seem to be looking at this with a clear head.

Janie

 

[AKmom]

Sorry to hear that the diagnosis has changed. Hopefully things will remain slow.

 

[kfletcher]

Sorry to hear this Mike....I'm actually waiting on test results to see if my diagnoses will be changed also.... your in my Prayers!

 

[sjaza_granny]

Your in my prayers Mike. So sorry for your new diagnoses.