Hi Pedz

the benefit of seeing a multidisciplinary team, at a cutaneous lymphoma Centre of Excellence, is that if you have CTCL MF, or another variant cutaneous lymphoma, your diagnosis will be corroborated.

It sounds like you may be seeing a dermatologist, who may be practicing in relative isolation.  

Has your DNA been reviewed for mutations?  Have you had a bone marrow biopsy?  Those two items will lend weight to a more definitive diagnosis.

Regards - Mori

Hi Pedz

mori is right!! I was diagnosed with stage 1B CTCL (mycosis fungoides) 3/4 years ago. Like most of us on here I too was misdiagnosed for eczema/psoriasis. Luckily for me my dermatologist had knowledge about CTCL and straight away referred me to a centre of excellence. Have you been you been staged? If so what stage what stage were you diagnosed at?

jay

Hi Pedz,

I guess that most of us on this site have stories to tell about long delays in diagnosis and miss diagnosis.  For 4 years I was told I had all sorts of things, including the funniest being that I was allergic to my own sweat!  The reasons why we all had these problems are that generally MF progresses very very slowly and also is incredibly rare. I was told once that there are only about 200 cases in the whole of England. In the end I struck lucky by being transferred to a dermatologist who earlier in her career happened to have worked at a centre of excellence in London and recognised what I had and also knew what tests were needed to prove it. She then very quickly transferred me to the London hospital where I still attend.  I've had it for 10 years now and am still at stage 1b

Im surprised that UVB didn't work for you because my understanding is that our rogue T cells are supremely sensitive to UVB.  When I'm having a course my skin is very clear but unfortunately when I stop the rash soon returns.  I've also been on a drug called Bexarotene, which works for many people to reduce symptoms (there is no cure), but after 6 months trialling it I decided that the side effects were making life quality so bad I was better off managing the symptoms with UVB and steroid creams.  It may be worth looking into Bexarotene because I know it is helpful for many.  

As has been said by others, I strongly recommend that you get referred to a centre of excellence for cutaneous lymphomas. If you live in the UK there is one in London. They at least will be able to confirm the diagnosis or reject it and you will know for sure what you have.

Good luck,

Andy