Hi this is really aimed for the ladies in our group. I have suffered licheon sclerosis down below for a very long time well before I was diagnosed with CNL but it is really bad. I’m seeing a Dermatologist regularly but nothing at all is helping. I suffer mainly at night and also suffer cramps so basically I’m not get much sleep. I’m wandering if anyone else suffers the same and if anyone has found anything that could help. It has got worse since my diagnosis.
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Hi @Leggit.
That sounds really uncomfortable. I hope the dermatologist is able to help. Please keep us updated on how you get on.
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Hi @Leggit that is a new one on me.
It sounds really uncomfortable and I hope the dermatologist can help you.
What does your specialist nurse or haematologist say, did it coincide with your diagnosis?
Please do keep us informed and take lots of care of yourself.
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I got diagnosed with Myelodysplastic syndrome (MDS) this year. I’m on watch and wait but I too suffered severe lichen sclerosis about 8 years ago with some recurrence after 3rd covid jab and omicron covid in Jan 2022. I am male mid sixties. I also started atrial fibrillation about 11 years ago.
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Hi @Jono so glad that you have found us and found some similarities on here. When I was diagnosed I thought I was the only one in the world.
You demonstrate what unique, complex beings we all are.
I hope you get a lot from our forum.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
We are a friendly lot and I really look forward to hearing more about you.
Look after yourself
Many thanks for the kind words. I hope you are coping well.
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Yep, I am doing fine thank you @Jono 6th monthly blood tests in October, anxiety will start soon , take care