shucks wrote:I am having an exacerbation, causing some ON and pretty crappy weakness. Is short, it sucks. My neurologist at Duke is 3 hrs away, so when I have an issue, I email her nurse, who talks to her and emails me back in a couple days. She tells me that I need to go to my local hospital for 3 days of solumedrol and then ween off of them with pills. Further to get a brain mri, ever though all my lesions are in my spine. I, in turn, go see my pcp who interprets all of the medical jargon, and who tells me the best way to get whatever treatment she wants without breaking the bank, and lets me know his seasoned opinion (my neuro has been practicing 5yrs and my pcp since 1975) what it entails. He tells me not to go to the hospital due to costs, and he will figure something out that will work, even if he had to buy the machine and put it in his office. He calls me after he sets up the mri, and then he tells me my insurance will cover, and he recommends i go to a cancer infusion center for the solumedrol. I get there today, scared to death to get treatment for my first full on treated exacerbation, and my insurance reqires a dr visit and to call in an in house treatment for it to be covered. The staff Dr's are all oncologists, since CANCER CENTER is in the title, and he gives me a 10 minute exam prior to hooking me up to the machine. He's a young guy around 30, like me, and a really nice guy. While he's giving me the old push/pull here and breathe deep there, I asked him point blank about hsct treatment. He asked if it was autologous or someone elses cells, and then asked me if I thought it was the clean stem cells or the chemo that stopped it. He furthe says he knows just enough about MS to be dangerous. He tells me that he has wondered before why it wasnt a treatment, and then explained to me for 5 minutes or so why, in theory, it should work famously. He told me that he had not read about it as a treatment, but that if MS is auto immune, like they think it is, then there is no reason for it not to work.
I know you guys all know more about it than me, but I have researched everything that people have written about it as a treatment, to the point that some folks wont respond to me anymore due to the depth of my questions. I am trying to get in to Dr. burt's study in chicago, which I also talked to today, and will go further into further down. This bright eyed oncologist really made me think, in a few minutes time, about how our pharmaceutical system is screwed up, and how the right dr's might not be handling our treatments.
When I was done and suffering through the aftermaths of junk food and booze the steroids made me crave, I spoke to the folks at northwestern, who told me that they thought they could do this treatment indefinately until either approved or denied by the fda. This came as a shock to me, who thought that they would have to shut down in 2012 while the fda spent time reviewing the treatment. My resolve is steeled further, and only hope to get in to the trial in January when my 6 moths of copaxone is up. So far, the shots arent bad, but why bail the sinking boat when you can plug the hole?
Please excuse the length, but I found the day both crappy and enlightening. .
shucks wrote:It is a double edged sword. I have to have 2 exacerbations in six months treated by solumedrol while on copaxone to qualify for dr burts study. I am really hoping to get in in january to try to take charge of my condition instead of these speeches from neuros about coping with the disease. I am 1.5 months in and this is my first treated one. Part of me doesn't want to ever have any progression and another that wishes it would happen already
Lyon wrote:I haven't read the terms of study participation. Is there a commitment that eventually everyone, even those not originally treated with HSCT, will eventually be offered treatment?georgegoss wrote:Just FYI to be mentally prepared for the possibility. . . . even if accepted to Burt's HSCT trial, becuse it is a randomized study there is a 50% random chance the accepted patient will be assigned to the control arm of the study. If so that means no HSCT and the patient will only be offered convential drug therapy.
shucks wrote:If you increase by one point on edss score, you can switch to the active arm of the trial. I am sure that its tough with tysabri being the control arm. I am nott against germany or israel as treatment options, but if the lymphoablative treatment works just as good as the more dangerous one, and I wouldnt have to take my inoculations again, I think it should be my first option. I love all of your insight george, please keep it coming.
shucks wrote:If you increase by one point on edss score, you can switch to the active arm of the trial. I am sure that its tough with tysabri being the control arm.
It's hard to go wrong getting HSCT treatment with Burt. There is no better experienced facility.
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