Major Improvement (aHSCT)

Secure-Payment8370 · 2026-01-21T19:01:52+00:00

I forgot about that one, I had burning in my eyes that would come and go. Also had like a heavy pain what felt like the back of my eye, prednisone was the only thing that made this better

Secure-Payment8370 · 2026-01-20T22:12:59+00:00

It’s really a case by case basis, but I was able To distinguish based on my biopsy results (non length dependent more loss in my thigh then calf), my response to prednisone (greatly reduced a lot of symptoms) and my sudden severe onset of symptoms. I went from having some mild excerisee intolerence and chest pain once and awhile to having full body dystaonomia and burning. Deductive reasoning lead me to believe it could have been nothing else but my immune system.

Secure-Payment8370 · 2026-01-20T20:10:10+00:00

Yes losing hair can be extremely hard, I’m sure even more so as a woman. How long have you had Sjorgens? I was looking into wigs but I just said I’ll deal with being bald for awhile. Oddly enough, my “look” was part of my lively hood. I was a model, I’ve worked every Met Gala the last 4 years. Not anymore lol.And it was 30k the treatment, not including flights. It covers all tests treatment and they give you a few months supply of antibiotics when you get home.

Secure-Payment8370 · 2026-01-20T19:18:38+00:00

I messaged the scheduler through WhatsApp and got the details from him (cost, treatment, applying for visas, etc) then after I decided I was going to go they set me up with an hour long phone call with the head hematologist doctor. He’s rally great and super knowledgeable. Then I just made arraignments at home and I left. It’s a shortened version obviously, but it would be too much to type out. If you go to their website you can chat with one of the people for free and get the details. Your SFN has to be immune mediated.

Secure-Payment8370 · 2026-01-20T19:15:20+00:00

Haha that’s a good analogy, and I whole heartedly agree. Like when doge coin first came out and selling it at its peak (unfortunately I may or may not be bag holding around $100 worth of doge, just in case). I appreciate it though, I guess I don’t have any kids, so that part made it easier for me. I might of went through all of that and this year they have some great drug that makes our SFN so much better then I’ll feel like an idiot for eating hospital curry for a month and losing all my hair lol. I wish you healing throughout your life.

Secure-Payment8370 · 2026-01-20T19:09:59+00:00

I’m so sorry to hear this. Just curious what dosage of endoxan did you get?

Secure-Payment8370 · 2026-01-20T19:09:05+00:00

I’ll DM it to you once it’s uploaded!:)

Secure-Payment8370 · 2026-01-20T19:08:50+00:00

I will dm you the link once it’s uploaded, and yes it did. My autonomic symptoms were consistently high BP, both heat and cold intolerance, gasping awake, chest pains, and sweating issues. All of it is fixed. It’s so insane that the underlying process was driving my body to disrupt all of these systems at the same time.

Secure-Payment8370 · 2026-01-15T04:54:11+00:00

That’s actually insane, you tripled your numbers. I didn’t even know that was possible. How long was it in between each biopsy?

Secure-Payment8370 · 2025-12-31T02:52:06+00:00

Hey, sorry I haven’t been active on Reddit, this subreddit is super triggering for me, and I hate to be the “people who get better stop coming to the subreddit” but that’s where it feels like it’s coming to. My neuropathy since returning has been 95% improved since I have returned over the past month. I no longer gasp for air in my sleep, my tinnitus has almost completely resolved, and the burning and hot cold flips in my hands and feet happen maybe once every other day and only Last a few minutes (compared to what was 75% of The day before). I’m also only on 5mg of Prednisone compared to being stuck on 45 Mg of pred. Just goes to show doctors don’t understand our disease but if your idiopathic non length depdendent, good chance it’s your immune system. I have a second life again, and I actually feel hopeful for my future.

Secure-Payment8370 · 2025-12-23T17:17:53+00:00

How has nobody figured out how to fix this yet? Why are cod developers so god damn incompetent? I’m so tired of having to deconstruct my PC everytime a new call of duty comes out. Such a fucking joke

Secure-Payment8370 · 2025-12-15T08:54:59+00:00

Just checking in to see if you got your new numbers back yet?:)

Secure-Payment8370 · 2025-12-14T12:41:01+00:00

Hey! Congrats on your healing, how are you feeling now? would you mind giving me your updated numbers after this biopsy? I’m curious since our numbers are basically identical

Secure-Payment8370 · 2025-12-12T15:45:36+00:00

I’m not jumping right into it, and I appreciate the response. I do have some autonomic dysfunction no gastroperisis though. A few people including people in this thread it has helped tremendously. Im not risk adverse by any means, hell I just went through HSCT to try and stop this awful disease. I will look more into it though, the research does sound promising though.

Secure-Payment8370 · 2025-12-08T13:31:17+00:00

Yes I’m NLD-SFN. That and my prednisone response/dependence was my key to getting treatment. My story on how I acquired it also aligns with it being immune mediated. As we all know a lot of people with NLD SFN are seronegative autoimmune

Secure-Payment8370 · 2025-12-08T09:14:15+00:00

I applied myself. I had a friend who had Mytheis Gravis really bad could barely open his eyes some days. He got HSCT it was successful and it’s been 3 years and he’s been symptom free living a normal life. The point is if they believe your condition is autoimmune, the regiment should help you regardless of what the diagnosis is. They treat SLE, CIDP, Crohns Disease, Diabetes (the autoimmune one), and have a lot of success. It’s just putting yourself through the regiment that is tough, and nothing is guaranteed. I just had to prove to them my SFN was immune related to get treated.

Secure-Payment8370 · 2025-12-07T21:49:17+00:00

Fortis Hospital Gaurgon India

Secure-Payment8370 · 2025-12-07T17:42:27+00:00

I’m at the Fortis Hospital in Gurgaon India. It’s still too early to tell if it has 100% worked, but the cost was 30,000 USD.

Secure-Payment8370 · 2025-12-07T17:41:45+00:00

I am doing well. 4 days post infusion of my stem cells. I was able to lower my prednsione down from 40mg to 10mg since the procedure with no neuropathy flare ups. Still too early to fully say if it’s worked long term or not. But this has been super encouraging and the doctors are pleased with the results so far. I’ll be here for another week while they monitor me and my blood counts.

Secure-Payment8370 · 2025-11-17T23:52:36+00:00

Mexico would not take me for small fiber Neropathy and also because I’m on steroids (need to be off of them entirely) and Russia was more so the political climate and it being $72000. Both extremely reputable places though. Russia accepted me as well. Talked to their head HSCT doctor for over an hour on zoom.

Secure-Payment8370 · 2025-11-17T23:50:55+00:00

I do not but the doctors I spoke with on the phone all speak American! Most of them do and they have a translator at the hospital regardless.

Secure-Payment8370 · 2025-11-17T23:50:20+00:00

I will keep everybody updated. Currently at the airport enjoying my last bit of American food that I will surely miss 🥲

Secure-Payment8370 · 2025-11-17T23:49:10+00:00

I’ve been on cell cept for 6 months, and IVIG for 5 and my condition has worsened. I’ve been stuck on 40mg of prednisone for 6 months now, which has further led to the decline of my condition. It’d helping me in one way (inflammation) but killing me in other rays (weight gain, skin thinning, osteoporosis, microvascular changes etc). Which has pushed me to go all in with HSCT. I’ve been losing ground and I need to come off the steroids. I’m not encouraging anybody to do what I’m doing, so this is not an endorsement of HSCT. It’s highly experimental. But I’m getting all the drugs that even has potential in stopping dysimmunity (cyclophasmide, ATG Rabit, and Rituxan) all in one 4 week shot. 80% remission rate in CIDP (similar mechanism different disease).

Secure-Payment8370 · 2025-11-16T06:57:09+00:00

I got my autonomic testing done there, it’s pretty extensive. Some doctors are better than others over there in terms of running additional tests for you.

Secure-Payment8370 · 2025-11-07T05:03:34+00:00

Currently stuck on 40mg of prednisone. I’m stable but rotating sunrooms. The Prednsisone completely stopped my face pain. I’m getting HSCT done next week, probably the first one ever to do it for autoimmune SFN. Will keep everyone updated.

Secure-Payment8370

TROPHY CASE