I’m going to continue to update this form as the months go on to provide people with an update. I got locked out of my old account and got a new phone, my old Reddit username was secure-payment8370. You can go there for the full story. Short synopsis I got aHSCT in India under my own accord (not recommended by a doctor, extremely risky) almost 5 months since my procedure was completed and my gains have only stacked from the first month I updated the form. The SFN is an afterthought 9/10 days, and the only days where I feel anything are usually self inflicted (drank too much plus lack of sleep) I might feel mildly buzzy or little pin pricks on my legs the next day. It’s all short lived. Other than that I’m back to living my life like normal again. All my autonomic symptoms have completely resolved (fight or flight constantly, BP spikes and drops, heat and cold intolerance etc). I’m back to working as a first responder, working out in the gym 5x days a week (trying to lose the weight I gained on prednisone). There has been serious consideration for the doctors in India to list on their website that they treat autoimmune small fiber neuropathy. The only thing they are waiting on is a year check in from me and a repeat biopsy. If both those things improve (god willing), they feel comfortable to list that as a disease treated by aHSCT (pending and evaluation from their head hematologist/neurologist to confirm its autoimmune in nature).
I took a calculated shot and made it under my own accord, knowing all the risks associated with it. I cannot make that decision for anybody, all I do know is it was the best one I have ever made in my life. But just because it worked for me doesn’t mean it’ll work for everyone. However, this disease is crippling. You know what you’re getting day In and day out, and personally that pain was too much to handle. If your life is as affected by this disease as mine was, I think taking all procedures into account is justified. No matter how extreme it may seem. It doesn’t hurt to just have a conversation with the doctor since it’s free. If anybody wants more info they can pm me. I only want to try and help as many people as possible by sharing my story and hoping they can gain something from it.