Thank you all for posting your stories, concerns, and experiences with various treatments. I want to encourage you all to continue to endure through the “what if’s” and unknowns. This seems to be the common bound we all have regardless of the path of our disease or treatment.

My story is just beginning (at least my awareness of it is). I just turned forty-two years old this month. I have DD in both hands, LD in both feet and knuckle pad (lovely). Both my left hand and foot are worse (I’m right handed).

Here’s a little medical background that may be relevant or not (the Rheumatologist I went didn’t think so). On Thanksgiving Day 2012 I became very ill with a high fever and flu-like symptoms. Ten days later I found myself in the ER with excruciating pain behind the knees. I was unable to stand without intense pain even on Morphine. After having a fever for more than three weeks straight and SED rates in the high 80s; I began to search my family history for the reason for my neuropathy behind my knees. I found MS, Scleroderma, Frozen Shoulder, and Crones with my parents and grandparents. Remembering many undiagnosed bouts of severe illness from my past confirmed (in my mind anyway) that I was dealing with autoimmune reactions.

As I was slowly healing during the beginning of 2013, I noticed a bump on my left hand the night before one of my many follow-up appointments. I almost forgot to mention it to my GP before leaving, who immediately diagnosed it correctly as DD. This was almost six months ago, now my left hand and foot are progressing quickly (at least it seems that way to me). My foot has pain most of the time and my hands give me trouble frequently. I have a couple of big nodules and a cord developing towards the wrist and ring finger on my left hand. My fingers are tight and I have an indentation and slight deformation, however, no contraction yet.

I feel I have exhausted the resources in my medical network and so far, prayer is the only treatment I’ve received. That’s for my mental well-being. I have contacted Dr. Brown in San Diego, CA and plan to contact Dr. Tripuraneni regarding RT. I have been asking God for strength and wisdom to help me deal with all this. I have two young boys that are watching me and I know that whatever I choose to do and whatever the result, they need to see their Dad persevere. Heaven forbid that if they ever have to endure a similar fate; I want them to have a positive example of how to deal with an adversity like this. This forum and the people that pour out their heartfelt experiences (good or bad) have been and will continue to be my encouragement. Thank you.

I will let you know what course of action I decide to take as I fear something needs to happen soon.

Sincerely,
Blair T.

Edited 09/15/13 05:44

In the alternative treatment section they mention N-Acetyl-L-Cysteine (NAC). This is a over the counter supplement in the US market. Your progression may be fast enough to tell if this has an effect. I assume it's safe, but the US is largely unregulated.