Hello everyone,
I appreciate this is very sensitive and I have not been diagnosed with cancer but I really need some help and support. 9 months ago I had an itchy, patchy, scaly rash that wouldn’t go away. I have always had eczema but this was different. It would appear on my arms and then I got patches on my legs and breasts and stomach, I used my steroid creams for my eczema and moisturiser which helped with the itching and appeared to help is subside. I ran out and went to the chemist to ask for more cream and the chemist said to me “that rash is not going to go away, you need to go to your GP.” I asked her “what it was” and she looked at me and said “the doctor needs to refer you” and walked off but wouldn’t elaborate. I went on holiday and the sun cleared my skin although I could always see the patches, then in November the patches came back again and I have two swollen lumps in my neck. I had one lump and it was checked and the sonographer saidnit was ok, I now have another lump in my neck and I don’t feel well. I have bouts of fatigue and my hands are always cold, I feel ill all the time like I’ve got a cold and it isn’t fully going, a sore throat and shortness off breath and dizzy like I’m not really here and when I walk sometimes it feels like my legs aren’t mine. I visited the doctor on Friday and she said it’s eczema and that’s it and because of covid I probably have long covid but I got the skin problem before I had covid. Has anyone else got experience of this and can just help me. I’m afraid. I am 37 but unsure if I am too young. Thank you so much to anyone who can help.
Hi Lisa R and welcome to the group.
I am sorry to hear about the journey you are on and the symptoms you are experiencing.
I have lived with and be treated for my type of Cutaneous T-Cell Non Hodgkin’s Lymphoma CTCL which is a rather rare skin Lymphoma.
Skin Lymphomas are very hard to diagnose and 99% of all GPs will not have any idea as to what to look for and like your circumstances, will most likely see it as Eczema or Psoriasis.
Honestly the only people who will be able to dig deeper into what you may have is a Dermatologist.
Has a referral to a Dermatologist been discussed?
Happy to talk this through more.
Hi again….. you are not over reacting, you are dealing with your well-being and health.
I had been seeing my amazing GP for a good 9 months with various skin rashes appearing. He tried all the tools (creams) available to him and basically said he had no idea as the creams were not making much difference so he referred me to my Dermatologist and this got the ball rolling to get a clear diagnosis…… but even my very experienced consultant being 99%sure as to me having a type of CTCL it took a year and 6 biopsies to get the pathology that pinpointed that I had Mycosis Fungodes one of the few types of CTCL.
Apart from my rashes and the itching I was more open to infections (colds and flu) as it turned out my immune system was busy fighting my CTCL that it was allowing infections to creep in.
My lymph-nodes were very reactive (going up and down) but this is normal when the body is fighting illnesses
I had no other symptoms and was actually working in a very demanding teaching job with a full timetable throughout these early years…… could I suggest that the other symptoms you are experiencing could well be down to full on stress of all this.
You need to have an honest discussion with your GP and requests a Dermatology appointment.
Stay away from googling - it is very confusing….. check this link > CTCL as it is very good information.
((hugs))
Going and having a frank discussion with your GP is needed….. and I think your need to insist on a Dermatology appointment as from your description the treatments that have been used are not making a big difference.
If you are not doing this already you need to start a photograph diary of how your skin changes…… with some dates and your stress levels.
I found my skin was always worse during the stressful periods of the academic year and always improved during the summer… this may have been due to the reduction in stress but sun always helps the skin….. then get worse during the winter…. This is a classic Eczema or Psoriasis cycles…… but exactly the same fur CTCL.
Hi again Lisa R sorry for not getting back to you but we have been out at our daughters all day..... and there are places in the UK that still don't have a any mobile signal.
It's unfortunate that you have had to make a private appointment with a Dermatologist but this will help move this forward.
I obviously can't comment on your GP........ but based on my personal first hand experience and as I have said before..... in all my 23+ years living with and being treated for my skin NHL I have never had a blood test that pointed to me having any type of Lymphoma let alone a skin NHL.......
Various levels of Steroid Creams were part of my first line and ongoing treatments that my Dermatologist prescribed for me.
Lets see what the Dermatologist says next week ((hugs))
