It's unclear exactly when it started. It seems like the earliest could have been 12, but I didn't start to see a pattern until 19 between then and 25 I saw a bunch of specialists about all my different symptoms and got a long list of diagnosis's.
My symptoms were burning and tingling in my hands and legs occasional loss of feeling that would very in time (minutes to weeks). The loss of feeling could be from waist down, my whole left or right side, or one/both arms. Elevated resting heart rate, and complete loss of feeling in finger tips and sense of hot and cold in palms. At 24 I started to think it was MS because my cousin has it and we have all the same symptoms so I made an appointment at MUSC. Almost a year later (2019) I got in, they did every test under the sun had me see a few other specialists. Then they did the skin punch biopsy and found ISFN. I was passed off to the neurologist over SFN there. Since then I haven't had much help since I can't take steroids and things like gabapentin don't help with the pain just makes my memory worst than it already is. I've been on metoprolol, stopped because I'm allergic. Tried gabapentin and things like it but didn't help. I've tried a bunch of different antidepressants and anxiety meds but they don't really do anything. Currently I'm on Librium and trying to find something else because my symptoms are just getting worse.
If my best friend said she had neuropathy I would tell her, look at us over achieving the rest of our school again and beating them to the wheelchair stage, it's not a bike club but we're still on wheels. We have dark humor. Then I would say invest on safety measures handrail in shower ect. Don't take baths. Don't shower home alone or without your phone in reach. Build up muscle strength, mainly core and arms so if you do fall because your legs go out you can drag yourself and pull up your weight. Listen to your body. Walk as much as you can, and call me on the days you feel like down because of it.
I was a cosmetologist. Got my license in 2016 and didn't renew in 2019 because my symptoms were so bad I couldn't work in a salon. I continued doing hair for my family friends daughter BF and myself. Two weeks ago I did my last haircut and color because I can't stand up long enough or hold my arms up long enough without causing pain. I haven't been able to drive for months now because I can't tell how much pressure I'm putting on the petals. I gave up soccer and tennis a long time ago. Now I write, read, play Minecraft, and spend time with my daughter.
My life has changed drastically. Work is non-existent, I've had a couple jobs since the salon but they only lasted a few months before my SFN got in the way. My last job lasted almost a year and was an at home one which was perfect but they pushed me to quit almost a year ago because a Dr wouldn't send a release for work letter for my LOA. Since then I haven't been able to find anything. At home I do my best to keep a schedule but it gets thrown off a lot. Socially right now I'm pretty cut off since I can't drive. My mom and friends live 40 minutes away. They come over when they can, but it's not that often. I talk to some of the other parents at the bus stop but that's about it outside the house.