Lupus, factor 5 lieden, raynauds, multifocal long bone avascular necrosis

[popclarky]

Hi, new here and dont normally introduce myself with illness list but am desperate for advice. Have had avascular necrosis in hip joints (now replaced) and distal tibia (bone grafted) and now have it in long bones (joint space preserved so joint replacement futile) its extensive and drs i see at leeds say they havent seen it before in this presentation and current treatments not working. I am in awful pain and they are adamant its lupus attacking bone marrow / blood. Anyone have any experience or can signpost to any medical professional who might have knowledge. They keep telling me i am only person in country to present with lupus avn this way and qm having difficulty getting my head around it. Any contribution appreciated. Thanks x

[Stillsmiling_Just]

Hello popularly, that sounds awful. May I ask if you are where you are being seen. I understand that Guy's and St Thomas hospital in London have a Lupus centre and they see many people from across the UK, and wondered if they could help.?

All the best

[popclarky in reply to Stillsmiling_Just]

Thanks so much for your response, i live in grimsby lincolnshire and seen in leeds a couple of hours away but am more than prepared to go wherever i can. I will have a chat with GP to ask if referral to london is a possibility. Thanks again, still struggling to believe i am the only atypical one but am guessin lupus bieng lupus it affects people in such diverse ways that perhaps no two people present in the same way. All the same its a lonely place to be and i think the prognosis will be that i become unable to walk. Orthopedics say no surgery can help as the length of both femur and tibia in both legs are heavily affected and cant replace all four full long bones. Trying not to think about what this could ultimately mean for my legs thanks again. Lisa

[panda2 in reply to popclarky]

Dear Lisa,

What a terrible predicament that would naturally create distress and desperation for you right now. I'm sorry I don't have any resources or experiential words. Hopefully the possibility of a London hospital can happen. Mostly I just want to let you know that I was sobered to read what you're going through. And I just want to wish you strength. Panda x

[popclarky in reply to panda2]

Awww thats lovely thankyou panda2 for the words of support. I know we all are going through battles but its heartening to kniw people out there can still offer each other support at difficult times ... hope you are stable in your health and thanks for taking time to reply. Lisa

[nancarolyn]

Hi popclarky. So sorry you are going through so much pain. Can relate to you. I have had similar problems and do not think you are the only one. Have heard that so many times about thi"s complex illness and think a lot of medical people are not putting the right diagnosis together a lot. I have lupus,mctd, avn etc. The avascular necrosis started in knees and long bones in my teens. At that point lupus was not connected to it. Went to "best orthopedic" and I could barely stand up. Pain was bad., but being young and in denial helped. Previous to seeing doc had been on 60 mg of prednisone for over a year. He said it was cause . walking on soft bones was more destructive. He put me on crutches for 2 years and did not know if I would ever be able to walk without them again. The crutches gave me relief and was glad to get them. I am now 68 and have learned that there is a connect between lupus and avn. Went to doc about 3 years ago, because i had a minor injury to legs. Minor for me is major. Pain was so bad,could not bend leg. Could not put legs on floor in the car.He took xray and said I have never seen anyone with lupus have such terrible bone damage, avn. Surgery was too risky, because of my other immune system., I could lose my leg with surgery.Now taking ivig infusion and hoping that will increase my immune system. I hope this helps you. Hate to see you in so much pain. Laying down with heating pad and electric blanket on my legs helps. It is on my sofa constantly. I listen to my pain more now., and when the pain gets bad I know my body well enough now, when it is time to lie down, or it will get worse . Please tell your doctor to help you with the pain. I live in Maryland, USA.Absolutely sure you are not the only one with these problems. Unfortunately doctors are learning too and do not have all the answers yet. Take care. Good luck. Don't give up.Please get help for that pain. Maybe some pain meds would help. God Bless You., Nan

[popclarky in reply to nancarolyn]

Wow thanks for this nanno, sorry you have been through all that which sounds horrendous but really useful for me to hear your experience. I have had a number of conflicting medical advise re crutches. One Dr said it will help take burden of wieght bearing off damaged bones another Dr advised strongly against as said my muscles would become weakened and less able to support the bones .... frustrating !! So many times different opinion conflicts leaving patient stuck in the middle. I am on buphrenorphine patches, ant inflammatories, gabapentin etc and they are considered referral to anaesthetic led pain clinic. Thanks for taking time to share it makes me feel a little better to know am not this strange anomalie of a person although wouldent wish it on anyone either. Lisa