Greetings WrittenConcepts..... MissMyGuitars here....

I agree that it is disappointing that threads on this site sometimes tend to drift off course.

At any rate, I was very interested to read your diagnosis information. I am a 50 year old caucasian male and I've been struggling with debilitating growths on my left hand that prevent me from playing guitar for about 4 years (see my post "Bummed in Dallas"). Although our symptoms and presentation are dramatically different - all of my growths are on the back side of my PIP joints while yours are on palm side - I too progressed through a stage where multiple doctors agreed on localized scleroderma as highly suspect. However, after seeing a dermatologist who specializes in autoimmune skin diseases and enduring a battery of tests in attempt to confirm this diagnosis (including endoscopy), the scleroderma theory fell apart. The dermatologist was immediately skeptical when she saw that my problem was essentially unilateral. She's been an autoimmune specialist for more than 15 years and said that 100% of her scleroderma cases have presented with symmetry and lab tests ultimately proved she was correct. My biopsy was positive for Dups tissue, which essentially leaves my severe joint pain and stiffness unexplained.

Anyway, wish I could help more but wanted to let you know that my personal opinion based on experience (I am not a medical professional) is that we both have a (perhaps undifferentiated) autoimmune disorder of some sort but it is not scleroderma. I strongly suspect that if you visited a dermatologist experienced in diagnosing and treating scleroderma patients, he/she would refute this diagnosis...

Highjacking aside, please hang with us so we can perhaps learn from your outcome...

nriedell,

I too would be leery of any medical professional who speculates that the cause of Dups is rooted in autoimmune activity. Existing data simply do not support that claim.

Just to be clear however, the reason I mentioned autoimmune disorder in my response to WrittenConcepts is because his biopsy failed to confirm Dups as a diagnosis. My understanding is that Dups tissue exhibits a very clear and distinct pathological signature so this is troubling for him. He can't really schedule a trip to Australia for NA until he gets the correct diagnosis (assuming his is in fact Dups).....

One thing I have learned from my very painful experiences are that autoimmune disorders can be very difficult to diagnose and classify. They sometimes leave no clues in blood chemistry and the symptoms sometimes mimic Dups (not the chords but definitely the nodules). Somewhere between 10 and 15% percent of us never get a definitive diagnosis and as a result, end up getting tagged with the dreaded "UCTD" label (Undifferentiated Connective Tissue Disease).

Here's wishing you a positive outcome; keep us updated....

I'm truly wondering now about this diagnosis. Of course, it may be right on point, but for now, I have no way of knowing this until I get a second opinion. The doctors and hospital failed to confirm my case was Dupuytren's, even though my left hand especially shows all the classic visual symptoms.

From the doctor:

Diagnosis: The diagnosis is localized scleroderma based on pathological findings and clinical manifestation.


After searching the internet for photos of people's hands, with a diagnosis of localized scleroderma, I was unable to find anything that even remotely resembled the appearance of nodules and cords on my left hand. In other words, it looks like Dups, but the lab results in this case say something else. Not sure where to go from here.

Quote:

---

nriedell,

I too would be leery of any medical professional who speculates that the cause of Dups is rooted in autoimmune activity. Existing data simply do not support that claim.

Just to be clear however, the reason I mentioned autoimmune disorder in my response to WrittenConcepts is because his biopsy failed to confirm Dups as a diagnosis. My understanding is that Dups tissue exhibits a very clear and distinct pathological signature so this is troubling for him. He can't really schedule a trip to Australia for NA until he gets the correct diagnosis (assuming his is in fact Dups).....

One thing I have learned from my very painful experiences are that autoimmune disorders can be very difficult to diagnose and classify. They sometimes leave no clues in blood chemistry and the symptoms sometimes mimic Dups (not the chords but definitely the nodules). Somewhere between 10 and 15% percent of us never get a definitive diagnosis and as a result, end up getting tagged with the dreaded "UCTD" label (Undifferentiated Connective Tissue Disease).

Here's wishing you a positive outcome; keep us updated....

---