Cade_Foster_117

If it is a person that I know well enough (my MIL for example), I just say I don't really want to talk about it thank you. She means well but sometimes goes through periods where she's like 'have you tried X obvious thing?'

If someone I don't know makes snide or just clueless comments (this happens all the time, especially like in elevators. Are we just awkward as fuck in elevators as a species??) I might be snippy back. One I get a lot is I'm going somewhere on my scooter and someone says "I need to get me one of those!" Now I know they're just being awkward but if I want to make them more aware of what they just said I say "One of what, a neurological disorder?"

When I am not having voice issues I definitely tell people off a lot, especially related to taking parking spaces. Because if I park right in front of somewhere, I may not need the scooter BECAUSE IT IS SO CLOSE!

One annoying thing is that people go from being fine talking to you when you're standing to ignoring you or treating you like you have a mental disorder just because you have a scooter/wheelchair.

Aside from just sheer panic of like wtf is happening to me? The biggest change is having to go from being very independent to not being too proud or vain to ask for help. And to adjust my expectations for the rest of my life, career-wise, travel-wise etc.

The voice thing is some major bullshit. I definitely think stress plays a huge role (I just had a second baby and been having some stress with my mother as well). That's part of why they think it is autoimmune, is that it has these flare-ups.

Interesting, I will look him up thank you! For me it is more just sheer pain with repeated activity (walking, talking, even can no longer pipette for example so I have to do only bioinformatics).

So they did test for it many years ago. Not ten times but they did do it. Also I have had many nerve conduction studies and they were all normal. I was just looking at the symptoms again right now and they don't seem to be what I have. Can't hurt to test again I suppose.

Not knowing what is happening to you and why is terrifying. I don't wish for a terminal illness or anything like that but just to be able to put a name to what I have would be a load off my mind. People ask what I have and I have to say autoimmune small fiber neuropathy but that is not a diagnosis so much as a description of symptoms.

As for relief, currently I take: Lyrica, Tizanadine, Prednisone, and was getting Rituximab infusions but had to stop for pregnancy. I am trying to get to try IVIG. Over the years I've tried many other things. One drug, Potiga, got pulled by the FDA which sucked because it had been helping me.

As far as looking through my genome, I guess it was a relief to see that neither myself nor my parents had the ApoE 4 genotype associated with huge risk for Alzheimer's, considering my grandpa died from that at like 75.

Thank you it is rough right now but as my husband says, it always subsides eventually.

I tried gluten-free for several months and it didn't do anything except make me sad. No one has really suggested elimination of anything else. I definitely have a healthy diet in the traditional sense (barring recent pregnancy cravings). I don't drink soda though or eat that much sugar. I have been interested in keto but haven't tried it yet.