The autoimmune doctor doesn’t think there is anything autoimmuney wrong with me and should just keep focusing on neurology :/
Another appointment of no real progress. I don’t like this outcome because I know the treatments left to try for EM pretty much are:
- Different versions of drugs I have tried and reacted horribly to, that will all require ween on/off time meaning every one I test will require like 2 months at least
- Stuff like spinal blocks, which even if they work are going to be completely useless when I get flares on my face
- Narcotics. Which seem to work on me, but I can’t really function on them still and eventually they will stop working. Also you know, the whole hassle of even getting any.
So yeah, even though there might be some weird experimental thing I don’t know about that doesn’t look too good to me. I was hoping that maybe I could find treatments from a different angle.
Also the dreaded “exercise” thing came up also. I have like 5 things wrong that get worse with exercise I find it hard to motivate myself to exercise when I know it will result in joints giving out under me, muscle pain, foot swelling and burning, hives, and coughing up this mucus that tastes like blood. I admit the muscle pain is probably worse due to lack of movement but that doesn’t outweigh all the other things, especially when my joints are doing that and I still don’t know WHY. I could possibly be doing permanent damage if I overstress them.
#also I utterly failed at wheelchairing so that isn’t looking like a viable option for me
I’m sorry you had an unproductive visit, but eventually something will stick.