Hi just wanted to know if anyone has these symptoms on walking and what they use for them, For the past 13 years i have realy bad pain in my legs,it did start with my right leg just after having my daughter,She was 10 weeks early due to my kidney disease,it starts when i stand up just after a couple of minutes (in both legs now)i get like a numbness seem to ,start in my feet then travels up the whole of my legs,then the pain starts and if i try to walk i cann't feel my feet so can fall,i need to sit down which helps i feel like a warm rushing feeling through my legs and the pain goes as if the blood is going through them again.I have been under the nuerologist for 10 years now thinking it was M.S but i have alot more symptoms also,dry eye,mouth,skin,this is due to sjogrens i have,Also have carpol tunnel,hiatus hernia,optic drusen,optic swelling,IBS,S M ANTIBODIES but no liver problems, palpertations,morphea,kidney disease and had 1 removed.memory problems under nueropsycologist,CNS problems,Empty sella syndrome,fatigue,nueralgia in my face thats all can think of at moment,but the worse is the pain in my legs. I have been on IV steroids as doctors thought M.S but since been told it most likely systemic lupus. and alot more medications but nothing helps the pain.Please help if you have had anything simaler and which meds helped you.
Hi vee,No mine is the whole leg i am not seeing a rhumatologist but these are a list of consultantsai do see.
1,nuerologist as thought it was M.S
2,nuerosurgeon, Op for intercranal pressure Also dry eye
3,nueropsycologist memory problems
5,Opthamologist optic nuritis,also pressure on optic nerve
6,dermatologist,dry skin patches on legs also morphea
7,maxifacial surgeon for sjogrens in mouth bleeds when eating
8,was seeing gynocologist untill had hysterectomy 4 years ago, also for dry virgina tearing when drying myself after toilet.
9,Also been seeing a doctor about my hiatus hernia and reflux of food also IBS,
10, Also cardiologist due to heart palpertations.
It was in the past when i had IV steroids,but am on prednislone perminatly and also betnasol to stop my mouth bleeding have to hold these in my mouth as long as possable then spit out.I have in the past been told i have spinal stenosis well that is what was seen on CT scan but when i had MRI nothing seen.That is one of the reasons M.S was mentioned,Another reason M.S was mentioned was i was unable to stand due to fatigue and my speach had gone wrong my husband couldn't understand me,And i had a red blotch right down side of face my GP said he had never seen this before,Also my pupils were dilated and could see swelling on my optic disc,I was rushed to another hospital as no nuero were i live as doctors thought it was a bleed.This all happened some 10 years ago now.I was in hospital 4 weeks doing tests for M.S,or sarcoidosis,Although my Spinal fluid showed something wrong,And the MRI showed empty sella syndrome.Since then i keep going in and out of hospital for IV steroids.I have sjogrens,And looking back now i did have raynauds in my teens.My two daughters have raynauds now my eldest also has pernicouse anemia,Takes b12 injections every two months for life she started when she was 13,now she's 20.Now my youngest daughter has started with raynauds she is now 13.My eldest daughter has also got this leg pain,This pain started when i was 26 after my youngest daughter,who was 10 weeks early due to my kidney problems.But i can remember having the white cold fingers in my teens.My dad also had something like this but never diagnoised sadley we lost him 4 years ago to brain stem stroke after being paralised for 10 years with first stroke.So sorry this goes on and on.But would be greatful for any help thanx
Dear suziewong, I certainly do not have any medical training (I'm just a patient). But you mentioned in your first post being positive at some point for anti-Sm antibody. This autoantibody is considered very "specific" to lupus, meaning it is NOT seen in other diseases/conditions.
If you would like to do some quick reading---
(1) See the "sticky posts" at the front of the Board. Also, the "sticky" about lupus test results contains a resource that discusses various lupus tests.
(2) Click the "Resources" tab above, then MedLine Plus, then diseases, then Rheumatology, then lupus.
Why don't you try to see a rheumie? Then if your problems do not end up being in that discipline, well, at least you'd know that you'd gone in for what seems to be a very logical consult. Good luck & keep posting us all when you have time, OK? Bye for now, with best wishes, Vee
How much prednisone do you take? Some of your symptoms are likely related to your steroid use - you may have developed secondary Cushing's Disease - which is serious but treatable. Also, do you see an endocrinologist for your empty sella syndrome and do hormone replacement?
I have Cushing's and a myriad of secondary diseases. I'm sorry about the pain in your legs, I don't know if the steroids can cause postural and blood volume related symptoms... ?
I have never had anyone describe anything like that before now. I have had this for several years, tried to explain to the doctor, but he didn't pay any attention to me. To me it feels like the blood drains from my legs and it hurts so bad I can hardly stand it and then it feels like the blood starts circulating again and the pain lets up. It usually happens to me at night though. I've been dxed with Lupus a year ago and have been on Plaquenil and Feldene, it has helped with a lot of my symptoms, but I still get that feeling in my legs. Glad to know I am not crazy, that someone else has it too. Wish you the best!!