(Archived from thomas - original forum)
thomas
Hi,

I am from Sweden and there seem to be a lot of ignorance regarding non-typical manifestations of the disease here. If it is not cutaneous, and your BMB is negative it is not possible that you have it seems to be the general idea here. My mother has been very ill for decades and one doctor actually strongly believed in mastocytosis 15 years ago. But the BMB was negative so any further investigation were dropped and she was left on her own. Now, in recent years, when I have developed symptoms similar to hers I finally was able to put things together. The doctors are currently looking into the matter again, but they seem to be so incredibly slow both in terms of waiting time and in suggesting strategies. I am therefore interested in finding top doctors in europe where you can pay (its government funded in Sweden, that's why it's so slow) and get a full work up with intelligent suggestions in a very short time. Has anybody heard of any european doctor or in which country one is likely to find one?

/T
09 May 2010 06:57 AM

(Archived from lisathuler - original forum)
lisathuler

YES!!  Thomas, you can write to Dr. Luis Escribano.  You can also write to Dr. Vargas.  There are a NUMBER of masto experts in Europe and even several up there in Oslo.   I can't recall exactly who they are, but if you get onto the Mastozytose German site they can give to you the names of the doctors there.    For my money I'd go to Dr. Escribano for he's very connected with how the US doctors are also working and therefore more open to the MCAS diagnosis.   Yet, I have a feeling that the MCAS that the WHO consensus is meeting about this September is going to change the viewpoints of the European doctors.  Here's the Mastozytose site address.

http://www.mastozytose.de/lay/forum-fs-reg.html

Here is Dr. Escribano's email address:

lescribanom@sescam.jccm.es

I think you'll find help through them.  Good luck and let us know how it goes!

Lisa
10 May 2010 07:33 AM