hi there lovely people , was just wondering has anyone had bleeding on the spinal cord ?
I am paralysed at the moment as I had a sharp pain in my back & everything then went numb from my chest down . I am wondered if this is caused by the lupus . They are saying if the clot reduces then I may get some life back in my limbs
Such a terrible situation to be in . I feel my life has ended .
Dear Tremarel I am so sorry to hear that you are going through this.
I don't have a direct answer for you, but I do know that blood clots can be associated with autoimmune disease, including lupus and anti-phospholipid syndrome (APL- they can run blood tests for this).
Best to try and contact someone at the Lupus UK charity now as they can advise you.
Are you clear as to whether you have had a bleed or a clot? Can you get more information from your drs?
If a clot, I would have thought it likely they would put you on blood thinning medication. Are you on such medication? E.g. Heparin, warfarin, apixaban?
You must feel incredibly frightened and vulnerable. Please keep the faith that your body is capable of repair, even if a full recovery is not possible. The drs don't know everything or get it right all the time.
It might also be worth looking on the health unlocked forum and online for spinal injury charities. It always seems to be these organisations that can offer the most experience, support and guidance because they are informed by people's lived experience and not just by medical textbooks which don't always represent the whole picture.
I wish you strength, faith and courage 🤗🤗 and the fullest recovery possible. You are still you and your life is changed but far from ended.🍀🙏
Aww bless u hoof prints . Thank u so much for encouraging reply ! I know it’s just so hard at difficult times when everything goes pear shaped . I have had a kidney transplant 27 years & the kidney has been amazing . Just everything else seems to go wrong . I had heart stent fitted earlier this year that was a difficult time when everything went wrong . Now all this to deal with. You are spot on life has changed but it certainly hast ended . Onwards & upwards we go x
it’s difficult for you,I was recently was hospital,shared a bay with. Very pleasant lady.
She had moved a box whilst gardening,this gave her a shattered vertebrae and couldn’t move her legs.it is so hard for her,as it is hard for you.
She’s having physio which is helping a bit.she was hoping to be home for Christmas,and is so disappointed.
Are they giving you anti clotting medication?
oh bless u thank u x
sending big hugs
Oh im so sorry to read this. How awful. I cant help but sending you lots of love xxx
I just wanted to send you some love and hugs and I hope things get better really soon XX
I am so sorry to hear this, so sorry you are going through it! Hang in there💖 I've gone through so much that I know with the right doctor you'll be back to yourself! I also had a few clots only found with CT scan & after a week on the new advanced blood thinner Eliquis they were all gone. Try to see a hemotolgist (you could have a blood cloting disorder like I found out after my clots) a neurologist, neurosurgeon, even an orthopedic doctor, someone needs to address this specific to you & NHS should help, I apologize I am in the US & don't understand how/when you can be seen. Try to get telehealth where you can as I know getting anywhere is far too difficult. Do you have a good general practitioner? A&E referrals from a hospital get first appts I believe, but a good doctor can get you back, I can't imagine how scary it is but your friends here are cheering you on, wishing you the very best!!!!! Please keep us updated & hang in there! This new year you will be healed! 🎊 🙏
you really have been through the wringer of late, let’s hope you begin to heal now and get better fairly quickly.
Sending you a virtual hug to know that I’m thinking of you and wishing lots of good thoughts your way. ❤️💐
how are you today
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