von willebrands

[westlife1]

Does anyone have a bleeding disease that may be related to lupus?

Anyone had a muscle MRI looking for lupus?

[Chris21]

I've had an MRI and pet scan, it doesn't actually look for lupus but anything lupus is 'attacking'. In my case I had pancreatitis which resulted in 'growths' along the stomach lining. Thankfully after the scans they were able to rule out cancer and say it was inflamed because of lupus. I don't have a bleeding disease? But my blood is suseptible to clotting and I do bruise easy. It affects us all differently. X

[westlife1]

Hi Chris

thanks for reply.My daughter had her muscle mri on Thur so we are waiting on results we will know the 17th of June . They are thinking possible Lupus or mixed connective disease . They also only just found out von willebrands she has but don't think related to her ANA blood results 1-640. She has had a lot of different things going on rashes, swellings, joints, pain, eye dryness vision ,hand and feet numbness, stomach problems for years .

[Cann]

I have not had it diagnosed but bleed spontaneously through the skin at certain times not determinable. I was riding with my husband to a hospital appointment a couple of weeks ago and suddenly my right arm on the outer wrist started to bleed quite profusely. I held a cloth tightly on it and it stopped after a while.

I get this all over my body and have done for several years now, but less frequently. I was diagnosed with thrombocytosis in 2001, but don't think that is the cause. I too bruise easily and get bleeding under the skin which turns purple and eventually brown leaving patches. I am sure drugs caused my problem initially especially steroids, but also strong antibiotics and surgery.

[westlife1]

Hi Cann

Thanks for reply . My daughter von willibrands has just been diagnosed her bleeding is nothing like yours. Have you been tested for Von Willebrads? We get told on the 17th June if they are away to start steroids. Thinking lupus or mixed connective tissue .