Hello all,
My name is Zoi and I'm 23 years old.
In May 2006 I had a bout of optic neuritis and upon investigation was found to have severe iron deficiency anemia that was non-responsive to oral iron supplementation too... My neurologist thought I had MS and then coeliac disease, then lupus and when, a few months later (in early 2006), I landed in hospital with aseptic meningo-encephalitis I got a cns lupus diagnosis. Since 2006 I've had about 7-8 bouts of pleuritis, 4-5 bouts of pericarditis and nephritis because of this presumed lupus and nothing else. Nonetheless, in after my lupus diagnosis I had another bout of optic neuritis, followed by tonic clonic seizures, followed by recurrent and worsening Transient Ischemic Attacks within about 4-5 days. All this from February 2007 onwards. I was on tons and tons of iv steroids, high dose cytoxan and rituxan at the time (had been given the more traditional imuran and cellcept before). I was started on heparin, got tests and found out I have APS (or antiphospholipid syndrome), an autoimmune disorder like lupus which makes the blood more prone to clot (very, very roughly speaking). The TIAs stopped but the neuritis episodes progressed and in September of 2007 I had a complication of Antiphospholipid Syndrome called C-APS or catastrophic antiphospholipid syndrome which basically means that I clotted nearly everywhere simultaneously (we're talking 4 DVTs in my leg veins, pulmonary emboli, brain clots, superficial venous clots etc etc etc; I even kept clotting my iv lines as soon as the nurses put the ivs in). I received plasmapheresis with IVIG and a 24/7 intravenous heparin drip followed by cytoxan infusions and thankfully survived.
Since then I've had 4 DVTs, two bouts of mononeuritis multiplex due to small clots and a big and troublesome episode of hypothalamic imbalance due to a clot. This episode resulted in two months of hyperpyrexia that were absolutely horrible (we're talking about a temperature that at 8.01 pm was at 36 degrees celcius and at 8.02 shot up to 42 degrees celcius only to shoot down to 35.4 degrees celcius by 8.05, and I'm not exaggerating about this... It was one of the most exhausting, if not the single most exhausting, things I've ever lived through) and insane blood pressure and pulse ups and downs (again because of the hypothalamic imbalance). All this was accompanied by severe edema the cause of which no one could figure out until I got hormone testing and it was determined that because of this hypothalamic imbalance I have severe aldesterone hypersecretion too (the least of my problems and easily solved with meds yes I know, just thought I'd mention it!).
Now my problem and hence the reason for posting here is the following: I have severe visual problems from the recurrent neuritis problems (I am registered blind in Greece), I have numbness in my hands from the mononeuritis multiplex episodes and obviously have a disease that just will not calm down no matter what treatments we throw at it...
I weigh 61 kg and am on 10.000 Anti-XA of Fragmin (which is a 24 hour injection whose dose is weight-related normal dose being one's weight times 1, or one's weight times 1.5 for C-APS patients) not once but FOUR times a day (not to mention that if I forget a shot I'm immediately covered in livedo reticularis and big symptoms such as seizures return within a matter of hours) and 325 mg of aspirin. I've done all the usual immunossupressive and immunomodulating meds and nothing has worked and have only recently began looking into stem cells both as a way of reversing some of the damage that has already been done and as a possible "treatment" for what I have (not sure if the latter applies though). And by treatment I don't mean cure of course, I realize this can't be cured, but something that will bring this disorder under some form of control. I've found two clinics I've been looking into, namely Beike Biotech in China and Medra in the Dominican Republic and am not really sure what to do... I've been reading up as much as I can about the types of cells used, the procedures etc and I've talked to representatives from both clinics but they both said they've never treated anyone with APS before and so I was wondering if anyone here with the same or any similar disorder has ever had stem cell treatment anywhere and has any comments or ideas (or for that matter if anyone here with a dissimilar condition has any ideas or comments or....) about treatments, the clinics I've found etc etc...
Any ideas would be greatly appreciated!
Zoi
My name is Zoi and I'm 23 years old.
In May 2006 I had a bout of optic neuritis and upon investigation was found to have severe iron deficiency anemia that was non-responsive to oral iron supplementation too... My neurologist thought I had MS and then coeliac disease, then lupus and when, a few months later (in early 2006), I landed in hospital with aseptic meningo-encephalitis I got a cns lupus diagnosis. Since 2006 I've had about 7-8 bouts of pleuritis, 4-5 bouts of pericarditis and nephritis because of this presumed lupus and nothing else. Nonetheless, in after my lupus diagnosis I had another bout of optic neuritis, followed by tonic clonic seizures, followed by recurrent and worsening Transient Ischemic Attacks within about 4-5 days. All this from February 2007 onwards. I was on tons and tons of iv steroids, high dose cytoxan and rituxan at the time (had been given the more traditional imuran and cellcept before). I was started on heparin, got tests and found out I have APS (or antiphospholipid syndrome), an autoimmune disorder like lupus which makes the blood more prone to clot (very, very roughly speaking). The TIAs stopped but the neuritis episodes progressed and in September of 2007 I had a complication of Antiphospholipid Syndrome called C-APS or catastrophic antiphospholipid syndrome which basically means that I clotted nearly everywhere simultaneously (we're talking 4 DVTs in my leg veins, pulmonary emboli, brain clots, superficial venous clots etc etc etc; I even kept clotting my iv lines as soon as the nurses put the ivs in). I received plasmapheresis with IVIG and a 24/7 intravenous heparin drip followed by cytoxan infusions and thankfully survived.
Since then I've had 4 DVTs, two bouts of mononeuritis multiplex due to small clots and a big and troublesome episode of hypothalamic imbalance due to a clot. This episode resulted in two months of hyperpyrexia that were absolutely horrible (we're talking about a temperature that at 8.01 pm was at 36 degrees celcius and at 8.02 shot up to 42 degrees celcius only to shoot down to 35.4 degrees celcius by 8.05, and I'm not exaggerating about this... It was one of the most exhausting, if not the single most exhausting, things I've ever lived through) and insane blood pressure and pulse ups and downs (again because of the hypothalamic imbalance). All this was accompanied by severe edema the cause of which no one could figure out until I got hormone testing and it was determined that because of this hypothalamic imbalance I have severe aldesterone hypersecretion too (the least of my problems and easily solved with meds yes I know, just thought I'd mention it!).
Now my problem and hence the reason for posting here is the following: I have severe visual problems from the recurrent neuritis problems (I am registered blind in Greece), I have numbness in my hands from the mononeuritis multiplex episodes and obviously have a disease that just will not calm down no matter what treatments we throw at it...
I weigh 61 kg and am on 10.000 Anti-XA of Fragmin (which is a 24 hour injection whose dose is weight-related normal dose being one's weight times 1, or one's weight times 1.5 for C-APS patients) not once but FOUR times a day (not to mention that if I forget a shot I'm immediately covered in livedo reticularis and big symptoms such as seizures return within a matter of hours) and 325 mg of aspirin. I've done all the usual immunossupressive and immunomodulating meds and nothing has worked and have only recently began looking into stem cells both as a way of reversing some of the damage that has already been done and as a possible "treatment" for what I have (not sure if the latter applies though). And by treatment I don't mean cure of course, I realize this can't be cured, but something that will bring this disorder under some form of control. I've found two clinics I've been looking into, namely Beike Biotech in China and Medra in the Dominican Republic and am not really sure what to do... I've been reading up as much as I can about the types of cells used, the procedures etc and I've talked to representatives from both clinics but they both said they've never treated anyone with APS before and so I was wondering if anyone here with the same or any similar disorder has ever had stem cell treatment anywhere and has any comments or ideas (or for that matter if anyone here with a dissimilar condition has any ideas or comments or....) about treatments, the clinics I've found etc etc...
Any ideas would be greatly appreciated!
Zoi