u/hydrangeas1224

I was diagnosed with sfn in 2020 and have had a progression of numbness since but the past few months it has really escalated. My genitals and face are the most numb, and my throat is starting to lose sensation. How do people function with this level of numbness? I'm worried I will not know when to have a bowel movement or to feel to swallow. Oddly, my feet are the least affected so I am able to walk fine.

I have tried IVIG without success and prednisone tends to flare my symptoms. My blood work is normal with the exception of low ferritin but I cannot get an iron infusion as my neurologist said that could further flare my neuropathy (I have had a previous allergic reaction) My neurologist is aware and says nothing can be done, so at this point I'm just trying to figure out how I'm going to function. Are folks able to function while being very numb? Anxiety definitely makes things escalate so I'm trying very hard to stay calm while this is happening though it is very difficult.

I've been on Mesalamine enemas for a few months now, but doctor is also adding pills since my calprotectin has risen. I have been having recent intermittent stomach pain I'm trying to get sorted and I'm nervous about starting the medicine because I'm worried it will worsen my stomach pain. Have folks had stomach pain as a side effect for oral mesalamine and if so, how did you manage it?

Has anyone been to the UNC IBD clinic? If so, what was your experience? I have an appointment next week and really hope they can help me

I have small fiber neuropathy which was diagnosed with skin biopsy. Even though I have a structural issue, I am wondering if anyone has had success with this for neuropathy or other structural issues? I mostly have numbness but have recently gotten very bad muscle fatigue and heaviness in my limbs. I have young kids and need to be able to function for them. I am hoping this work can somehow help even with structural issues.