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I've had a lot of pain and problems in my right thigh. Then suddenly there was a large dent in my inner thigh! Doctor did a punch biopsy 🤢 and the results posted today. Currently waiting to see what she says. 😷
I don't but it's one of the rare ones of the cutaneous lupus group. It primarily affects the fat layer beneath the skin and also has painful lesion. You can also have lumps above and under the skin. The legs is one area it affects as well as face, buttocks etc. The biopsy can confirm if you have it, they could also do a clinical examination and look at your medical history It can occur in people with SLE or on its own. Hope that helps @A MyLupusTeam Member and @A MyLupusTeam Member
Thank you all for reaching out. My dermatologist confirmed lipodystrophy after reviewing the biopsy results. She’s sending me BACK to rheumatology for further treatment. When I manage to get in to see him, I will be asking about ruling out TCell lymphoma. Fingers crossed that they can FINALLY find something that helps the pain in my legs. It gets so bad all I can do is cry.
Yes, it is rare. These results were from a punch biopsy where the dent formed on my inner thigh. It can also be closely confused with T-Cell lymphoma, though, which is why I’m waiting to speak with my doctor. I reached out seeing if anyone else has it. I’ve done a ton of research since my doctor first suspected this. Thanks for the thoughtful responses y’all. I’m struggling.
Hi Savannah, it is good that you've got a diagnosis of what is happening. Hope you get to see rheumatology soon so you can get started with the treatment. Let us know what they say about the treatment and if they'll run those TCell lymphoma tests for you. I'll definitely have you in my prayers that they find a way to help with those leg pains, especially as it affects you so much. Thank you for the update on how things are going.
@A MyLupusTeam Member, very true it can be confused with T-Cell lymphoma. Let us know how it goes when you've spoken to your doctor. It isn't one of those that many people know about and like you, I've been doing some research on it. If you don't mind me asking Savannah, what do you find a struggle?
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