Should I See a Scleroderma Expert?

One of the patients that I am working with asked me whether she should go see a scleroderma expert. It would be a very long trip and she was concerned that they might not really have anything to offer beyond what her local docs were already doing.

Here is my response to her:

This is a great question. My answer is that this falls into the “might always regret” response category.

Let me explain: when I was dealing with rapidly progressing limited scleroderma in early 1993, I managed to get hold of a copy of Medline on CD ROM (fascinating story in itself…) and spent several months pouring through all the research literature looking for an alternative treatment approach since basically all my physicians said was that “we really can’t do much other than treat symptoms, but lung transplants are getting better all the time when we reach that point.” I put together a research-based 20 page proposal with references explaining the logic behind trying plasmapheresis and submitted it to my physician team. What my very supportive internist told my wife was “I really can’t imagine it will do anything, but if years down the road as things are deteriorating, we “might always regret and wonder what could have happened if we had tried this approach.” He approved a one-year trial, got insurance to cover the trial, and the rest is in my backstory.

So, in your case, it might turn out that s/he can’t do anything more for you than your local docs, but what if down the road things are getting bad and you end up wondering “perhaps if I had seen the scleroderma expert…”.

Does that help?


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