Hey all, I don't pay on here often but I read all the stories. As some of you know it took 15 years for someone to figure out I have SFN... And I'm happy they figured it out!! I'm being treated with meds, I can walk again unaided. It hasn't stopped the small attacks on my body. The burning, the sharp pain, the creepy crawling on the legs, the exhaustion, the battle our bodies fight 24/7.

Now when I visit this doc, who I used to think was the bomb, I don't want to. There is no, "Let's get down to why!". It's all how are your meds, let's change this and that. He once told me it's not going to get better but you will find a happy medium... That's great, but can you tell me how I got this in the first place? Are my children at risk?

He tells me I should level out. Things will slow down and I won't get any worse. Yeah, that's not happening. Do others level out and get better, or is it time for a medication upgrade because your body got used too it?

We are all so different! We live with this pain all the time! Some days it's easier then others. I think about the future and watching my kids grow up, 2 already have. I'm the only one in the family who had managed to get everything. No one else has health issues, minor stuff. Is there a link to my grandfather's rare form of ALS to me? Hey I have autonaumic neuropathy too.

I'm sorry for venting, but I don't have anyone else who understands our struggles, our pain, our constant fight just to be apart of this life.

Many blessings to you all!!

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