trying to connect the dots

Hello friends and encouragers.

both of my parents have RA, dad also colon cancer, mother sjogren's.

my rf in that last 5 years has gone 4 to 8 to 10. I know it is not much. But it is an increase in any way. Here is a brief on my craziness. If you take the time to read and reply alone, I can not thank you enough.

I have a rare bone disease called Kienbock's. Wondering if anyone has been diagnosed with this along with vascultis or lupus OR any other autoimmune disorder. Kienbocks is avascular necrosis of the lunate bone, a carpal bone making up the joint of your wrist. Necrosis is death by loss of blood flow to bone. Even more rare about this disease- I have the condition in both wrists and it was not caused by injury, which in most patients diagnosed, it is work or injury related in the dominate wrist. This has led me to believe it may be autoimmune related or vascular/peripheral related. I have many symptoms of lupus or a GI auto immune disease and they have steadily worsened.Finally in to see to specialist in the autoimmune/mystery disease world. Would love to chat wit you all in the mean time. I am a young mother that needs answers. Thank you! - Leah

6 Replies

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  • Hi AIM - What you are going through is different than anything I am / have been dealing with, so I can't offer any advice that would be useful to you. I suspect that is true of most of us on here due to the lack of answers on this very active board.

    I would suggest that you give the NRAS help line a call and see if they can offer any assistance in your search.

    I am sorry for what you are dealing with. RA is hard enough to deal with, but your conditions are very much more so.

    Just know that from a support perspective, there are lots of wonderful people on these boards - Best of luck and gentle hugs

  • Thank you so much for your kind, advising response. I understand the board to be more RA specific then. I am new to the community and still trying to figure out exactly how it works lol. Is there a community for medical mystery? I wish so! Ended up in the ER with temp of 102 and pain pretty much everywhere. Explained all my symptoms and back story and told the doc I'm starting to feel crazy. He said well, you may be. My husband got my stuff and we left. Thank you again!

  • Oh wow - The only one that ever tells me I may be, or already am, crazy is my hubby and he is kidding [I think =) ]. That's pretty cold. It just sounds to me like you need a different doctor or team. Can you try somewhere or someone else?

    One of the things we always recommend is to keep a log of your symptoms and if you have swelling, or inflammation, take pictures. Keep track too of your food and drinks which may help you discern a pattern if there is one and it is related to the symptoms.

    Kienbock's IS primarily an injury disease, but WebMD mentions that it can be caused also by inflammation. And you can be seronegative and still be positive for RA. You indicated that you have an appointment coming up, so good luck there, and take as much documentation with you as you can for that appointment..

  • OH that was such a non-acceptable response from a physician. I am so sorry that we have to be subjected to that attitude especially during some of our most challenging moments. Hoping that you get some answers soon.

  • Bless you/ I am so sorry you are dealing with such difficult and painful issues. Not sure if you have gone to the autoimmune specialist as yet but I hope you get answers and some treatment. Keep us posted--

    I do have 3 autoimmune conditions/ inflamm arthritis/ crohns and vitiligo

    Trying to fine the best drug that works for the first 2 I hope you get the answers you are looking for Gloria

  • Unfortunately with RA it changes the way our bodies fight. Usually that brings on other issues. I'm sorry I can't help with ur rare condition. I'll pray u get answers soon so u can start to feel better.

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