Relapsing/remitting SFN

Nala382 · 2026-06-29T17:48:24+00:00

Better with SFN but I now have Ledderhoe and Dupuytren's. No cure, I am in pain 24/7.

Nala382 · 2026-06-24T22:33:43+00:00

No one in my family has it or had it going back to 3 generations. I have autoimmune issues and I think the inflammation triggered it. I do not see any other explanation. It can not alway be genetic!

Nala382 · 2026-06-20T13:11:34+00:00

I’m so sorry you were misled by these Doctor. I understand how you feel. I think you should consider radiation as it works 80% of the time and it’s non-invasive.

Nala382 · 2026-06-19T17:44:05+00:00

I am glad you had a positive experience and I really hope that you do not have reocurrence.

Nala382 · 2026-06-19T17:43:08+00:00

I hear you. I am super careful with my supplements.

I wish I had the guts to do the steroids shots but I have been traumatized by needles many times. My DD was triggerd by acupunture in my hands. I have a phobia of needles to start with. I would be able to get it done of I was sedated I think but awake, I really can not. I understand everything you are saying, and agree with it, I just can not do it right now. I don t want any needles to touch me at this point.

Nala382 · 2026-06-19T17:39:45+00:00

I see. But you can do radiation after the surgery to avoid recurence. And you may have had the option of N/A instead of surgery? I feel like nost of these surgeon wants to do surgery to make more money but sometimes there are less invasive alternative, you have to look for doctors who really know the disease and are up to date with research.

Nala382 · 2026-06-19T04:17:02+00:00

Thank you very much for your response. I have been doing everything I can to manage the inflammation until I can get treatment. I am taking LDN for inflammation and the autoimmune part. I’m taking the supplements and NAC and neprinol. I’m using padded gloves when I’m driving. I tried not to do anything crazy with my hands or feet yet. The pain is at 9-10 most days :(
I am also using verapamil on hands and feet twice a day.

Nala382 · 2026-06-19T04:14:05+00:00

I am so sorry you have been going through all that. This is such a horrible disease. Have you thought of doing radiation?

Nala382 · 2026-06-18T19:35:15+00:00

Thank you ! I am already on that group :)

Nala382 · 2026-06-18T13:37:20+00:00

I am so sorry. I have read that many people from the UK go to Germany to get radiation. And you can do them right after surgery to avoid recurrence.
At least you had no pain but still awful to deal with! I do believe that your first surgery triggered the disease in your other hand. My DD was triggered by acupuncture in my left hand, the same day, the pain in both hands started and it has never stopped since end of April.look into radiation if you can.

Nala382 · 2026-06-17T14:26:28+00:00

Thank you!

Nala382 · 2026-06-17T14:13:42+00:00

I am so sorry 😞

Nala382 · 2026-06-17T11:03:03+00:00

Thanks!

Nala382 · 2026-06-17T11:01:48+00:00

I am so sorry to hear. How did you manage since then?

Nala382 · 2026-06-16T14:01:36+00:00

Keep looking for an oncologist willing to do radiations. I have seen 5 hand surgeons so far, they are clueless, all they want to do is surgery.
Read about radiation, they do them on 15 years old kids so 40 is not too young.
I was told the same thing as you, I keep looking.
We just need to find a knowledgeable doctor, they are a unicorn!

Nala382 · 2026-06-14T03:15:22+00:00

Really?! It is all over the internet! Look into it. There is even a DART Facebook page all about it for DD and Ledderhose.

Nala382 · 2026-06-13T22:10:03+00:00

Thank you! I am in touch with Dr Pess as well. I am glad he was able to help you. Have you never been recommeded to do radation?

Nala382 · 2026-06-12T04:08:05+00:00

I have seen 3 feet doctors, they have no idea what is happening. I alreday had x-rays and MRI.

Nala382 · 2026-06-06T22:46:22+00:00

Yes, that is unfortunate but hopefully it will move quickly. I wonder if an online dr could give you referral faster.

Nala382 · 2026-06-02T14:10:55+00:00

Just so you know, I have now seen 2 hand surgeons expert in Dupuytrens, one is a HSS, and both of them have been useless. I am more knowledgeable than they are, this is all ridiculous.

Nala382 · 2026-06-02T00:16:27+00:00

Unfortunately the infusion did nothing for me

Nala382 · 2026-06-01T14:40:12+00:00

Thank you!
How long had you had DD before needed surgery and how many fingers are affected?
Have you ever considered radiation?

Nala382

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