CuriousGirl

hi there. thanks for saying hello

Hi Curious
How are you doing?

desi

Hey,

I don't know much about either (other than they're usually not quick moving) It IS good that you didn't get specifically bad news. If you have questions, Wright is quite knowledgeable and can help you sort things out perhaps. Hang in there.

Are PMA and Hirayama's disease the only two differentials? Is CIDP no longer on the table because you're not responding to IVIg? Hirayama's disease does plateau after a few years and then doesn't get any better or any worse, so it's manageable. Did the neuro go into any specifics about your tests or did he/she just simply tell you what you might have? If he/she didn't, you should demand the specifics and if you need help interpreting, I would be more than happy to do that for you. Hang in there in the meantime and feel free to contact me if you'd like.

Hello CuriousGirl

I saw your post to Kelleyri and it sounds like you might have some questions concerning all of the differential diagnoses that are on the table for you. If you needed any insight, I would be more than willing. One thing you have going on your side is the difficulty in your diagnosis: the longer and the more difficult it is, the more it points away from ALS. Hang in there.

Hi Suzanne,

Yes, denial has worked well for me too. Try not to worry about what your doctor will say this week. I don't know how quickly the IVIG treatments are supposed to work, just not that familiar. There is a member who's husband has been on IVIG for quite some time. Her name is Laurel. If your latest appointment still has your doctors leaning toward continuing these treatments, maybe you could contact her (Laurel) she might have feedback as to how long it took for her husband to notice a positive change. Good luck!

Welcome to the forum :) I see you've been a member for a while, but I've not really caught any of your other posts. Good luck with your neurologist appointment later this week.