been a long time since I posted anything I was diagnosed with Hughes syndrome in 2002 Despite negative antibodies
I had suffered multiple DVTS since 1988 iliac femora DVT pulmonary embolism and multiple early miscarriages I was also diagnosed with MS after an MRI and lumbar puncture
I was treated with steroid drip azo... something or other and the mild chemo thingy for 6 mths cyclo something or other sorry been a long time! I was a put-on lifelong Warfarin
After early menopause ( age 46) my illness started to just get better 3 yrs ago I decided to come off all medication and have been fine
Then out of the blue, my left calf became achy and swelled up 6cm bigger than the right one
It's not agony but I'm wondering is this likely to be damage from the old DVT or could it be a new one
I have not been ill don't feel ill and not put on any weight or anything
Any advice greatly appreciated just hope to god it's not some flare up or something
Many thanks Jane
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mully
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Hi i just went thru a left leg swelling started 2/28/20 and went thru 5/13/20 . After 3 Iv's and many Specialists appointments it was found to be Tenosynovitis - inflammation and infection in the bursa and then a rare thing happened it got into the sheath that houses our nerve and tendons'etc . i was on many different anti-s .sop it took the better part of 3 months . I was swollen from left knee down to the bottom of my calf . I wore compression socks most of the time .and last Anti's were Cipro and Bactrim both at same time very heavy dosages also . We never did find a definite cause - skin not compromised any where on my entire body - no spider - bee - tick -bites anywhere . So actual cause ,we had none .
Yes could be flare of sticky blood making old injury display symptoms, but if it was me I would like to know for sure - and get a doplar to make sure I don't have a new clot?
I just want to know. You say you were on lifelong Warfarin and then you say that 3 years ago you felt better and stopped all medications........ Warfarin also?
Hi , Yes I came off warfarin too Yes I know very risky ( and against medical advice) but I've been fine for 3yrs Not seen any doctor not even the GP for 5yrs so was just hoping for the best
We must never stop anticoagulation. If we have a diagnose of APS we will have it the rest of our life. The symptoms may ease and the antibodies can go up and down again. The thickness of our blood (INR) is what matters and that it is thinn enough to avoid clots and tromboses.
Follow the good advices the others have given you. Do something at once as you are not anticoagulated.
Let us hear how it goes for you! Good Luck and take care!
Do get this checked out. Something is going on, and, those APS antibodies may have, again, as they tend to do in us, over reacted to... something, An allergy? A food? Because that unknown person who sneezed ahead of you in the grocery aisle?
If that was happening to myself or any of my family, I would be seeking a medical opinion with some testing as soon as possible. I would certainly be ringing 111 rather quickly. MaryF
I wonder when you were on Warfarin for life what therapeutic level did the Specialist put you on? If you are on a too low INR the Warfarin will not work.
You also had a diagnose of MS. I suppose it was a Neurologist who put you on that diagnose. If they do not know APS well, as very few Doctors do, they diagnose MS as the neurological symptoms are very equivalent. It is very important for us to get a Specialist who knows this autoimmun illnesses and knows also to distinguish between APS and MS.
You say you have stopped Warfarin and selftesting and been fine but now you talk of dizziness and vertigo and other typical symptoms. It is important now that even if the Scan shows nothing you should be on Anticoagulation like Warfarin and selftest with an INR high enough to get rid of those neurological symptoms. Are you positive to Lupus Anticoagulant when you tested you for APS long time ago? If we get miniclots they are very difficult to find on any Scan. They have not found any clots on me but tripplepositive with high titres and TIAs etc. Warfarin has been my lifesaver and I am happy to be able to selftest in Sweden as that is the only way for me to keep my INR in range.
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