I've just made an account, so apologies if this is a mess haha! 
 

I've been following this thread for quite some time now. I've had this rash starting last year around april/may which started off on the back of my neck. I assumed it would go away, but after a couple months it started spreading from my neck to the left side of my body in a pattern, this started turning my skin darker/almost black. I decided to take a trip to the doctors and they referred me to a dermatologist. I've had blood tests taken which have come black clear, and I've also had a skin biopsy that's come back clear too, but the rash is not going away, after some googling as you do, its seemed to look like folliculotropic mycosis fungoides.. would I be stupid to mention this to them?
however my body is not responding to any of the medication that the dermotologists are prescribing and ive started to develop scarring alopecia too! Ive also got a scheduled mdt meeting soon as the doctors don't know what it could be, they suspect lichen planopilaris but there were no traces found in the biopsy! and was wondering whether anyone has had any similar experiences or had any advice (:

I'd mention it to them as my blood tests and most biopsies came back clear also observe the way they look at it if they go and get more people to look then it's something unusual.mind it might be psoriasis or ezecma which is unpleasant but not potentially life threatening.have they done a patch test for ezecma?

I forgot to mention! I've had eczema since I was a baby, so they said it definitely isn't that, the doctor did call another doctor in, to figure out what medicine to prescribe as a last attempt, then they both decided I should be put through to an mdt meeting.. she said that these meetings only occur with challenging cases, in which she said I am one.. so I'm quite unsure  

I ask them about mycosis fungoidis but it's hard to detect at the early stages of 1a although with the coverage you speak of it could be 1b?also are you sure what you had was really ezecma and not mycosis fungoidis misdiagnosed? it's often,well often begin relative as it's so rare, misdiagnosed as ezecma and psoriasis.i suppose that if you reacted to the ezecma patch test you must have ezecma but you could have mycosis fungoidis to boot? another rare alternative is you have ezecma and psoriasis a rare combination but it does happen.

There's not a centre of excellence in Perth, Western Australia.

And its a 4 hour flight to Melbourne.

Support can be obtained by going to the Haematology Dept of one of the city's major teaching hospitals, who then video conference with the specialist team in Melbourne.

welcome paddington.

I think that staging at 2B should be considered a threshold; that's when tumours appear.  Thankfully about 85% of people diagnosed with CTCL MF don't progress to stage 2B.

And consequently, the lucky 85% don't have a reduced life expectancy.

Mori

They did mention psoriasis but soon ruled it out, the rash that I have is different to my eczema completely, I'm currently taking antibiotics (lymecycline) and a topical steroid as well as a liquid form of a treatment for my alopecia, but they don't seem to be working.. I appreciate your responses btw! I feel kind of embarrassed to mention this do my doctor :confused:

No most seem to hover around the 1a stage and don't go beyond it I don't think that many even jump to 1b?2b is very serious.2a is regarded as low level but obviously as it's the stage below 2b the ideal thing would be to inhibit it there.i don't know if it progresses more rapidly the higher the stage but I suppose it would stand to reason as it weakens the body it gets more of a foothold and gets stronger? Melbourne is a long way from Perth!I suppose slightly better than Sydney.ive read,to digress from mycosis fungoidis,that Perth is the city with a population of over 1 million that is further from the next city with a million or over.nearest 1 million and above city Jakarta and next nearest Adelaide.st Petersburg AKA Leningrad is the most northerly city over a million.

Unfortunately yes 4 of them but if you have mycosis fungoidis they're not cysts but tumours.the ones I had where mighty unpleasant and one nearly killed me as it became infected with something that they never managed to identify.those MF tumours are bad news and on the hands and toes will lead to amputations and possibly  even  death  if you manage  to avoid those options it'll still destroy the ligaments and your diget become locked.before I was diagnosed with MF,well before I'd had the misfortune to have even heard of cutunous t cell lymphomas or mycosis fungoidis, I had one form on my thumb and thought it was a subacious cyst and tried to drain it using magnesium sulphate paste....it didn't work!and caused me a lot of pain and trouble infact it's had radiation treatment just yesterday.

As an additional bit to the above.those things that look like cysts that are generated by the mycosis fungoidis are solid and they are made of hard tissue with sometimes tiny patches of white pus in bits of them.subacious cysts look similar and I once had one on my head,well 2 but years apart,and they have a lot of pus in them which you can draw via a compress of magnesium sulphate paste.subacious cysts are unpleasant but harmless, unless they become infected obviously.the tops of the mycosis fungoidis tumours can rupture and it's full of dimples,looks a bit like the surface of the Moon except red (surface of Mars?!)if this happens the pain is very bad.obviously if you don't know what they are you might be tempted to tinker with the tumours as you're likely to think they subacious cysts.