multi site avascular necrosis after non Hodgkins- could Hughes be a part of this?

hi- I'm new to this site but am asking on behalf of my daughter aged 27. 10 years ago she was diagnosed with nonHodgkin's lymphoma and received chemo and high dose steroids. 3 or so years after this she started with hip pain and then knee pain. She has now had two THR and one extensive knee replacement and is due for her other knee to be replaced. It's now in her shoulders, elbows and possibly wrists and jaw. We have always put this down to the high dose steroids, but I began to wonder if there was something else as well. She gets at least three migraines and severe visual disturbances every day and has had brain scans for this-nothing has shown up. Lots of joint and nerve pain but all put down to after effects of chemo and steroids. Trying to think of any family history- her sister had late miscarriage 18 weeks and also had henoch schonlein aged 4, another sister has endo. All three sisters and myself very painful and heavy periods. I have Atrial fibrillation and there are other bits and pieces. Has anyone any experience of Hughes after cancer and do you think this would convince Dr to do tests? Thanks Ali

2 Replies

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  • Hi there and welcome, a lot of us have had to be detectives with our own and full family history, your doctor will not need much convincing or if not, you could ask one of the specialists involved currently. The blood tests are cheap, I will load up the charity website for you, and separate out the blood tests and also the list of specialists. This is the route to go down, start with the blood tests. Also if you make an appointment, before hand write a short letter to the GP practice by email marked for attention of GP, giving them the list of symptoms etc, the list of symptoms and also the list of medical consultants they could refer to. hughes-syndrome.org/ hughes-syndrome.org/self-he... www.hughes-

    syndrome.org/about-hughes-syndrome/blood-tests.php#.UvvPWPl_u3Y hughes-syndrome.org/about-h...

    symptoms.php#.UvvPcvl_u3Y

    Also you are not the only person using this forum to have had issues with cancer, others I am sure will answer you with more detail.

    Have a really detailed look through the site

    Mary F

  • Thanks Mary that's so helpful! Yes we have to do our own research, but at least that empowers us. My daughter has been through so much, but each part of her that is 'broken' is being dealt with separately- hip specialist, knee specialist, etc. They are all so excited by how rare her case is, but that doesn't help us find solutions! No-one seems to look at the big picture. I will read through the information and we will make an appointment and follow your guidelines. All the best Ali

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