Treatment confusion
Posted: Fri Nov 27, 2009 8:26 am
I was finally diagnosed with MS in June, after ignoring minor symptoms for years, and then months of doctors and neurologists dithering.
Being the research freak I am, and having some family members help out, I quickly found Dr Slavin's stem cell program and signed up. I was living in Israel at the time, and he is at the top of the lists of Drs to work with for stem cell therapy, so that much of the decision was easy.
I also soon started on a 3.0 mg daily dose of Naltrexone (LDN) and have since been upped to 4.5 mg daily. I am not sure it is helping at all, though, even at the higher dose. I am feeling less downtrodden, so maybe that's the effects of the endorphin modification, but other symptoms haven't changed.
Because of circumstances outside of their control, Slavin's team wasn't able to get me a spot in the hospital for treatment for longer than usual. The extraction was quick and absolutely painless, at least.
While waiting for a spot in the hospital, I learned of alemtuzumab (CamPath 1H). I've been speaking with a doctor in the US who can and will prescribe it off-label.
While waiting for progress on that front, I learned of Zamboni's research in Italy and it's growing following in North America. I quickly found a place to be scanned in my home city, and I am discussing the subject with a vascular surgeon who is considering starting an MS study - scans and treatment.
Now, finally, Dr Slavin's team has a spot for me.
I have been seeing several doctors in Canada and in the US, but I haven't decided on anyone as my primary physician.
I could use advice on how to proceed. What should I pursue first? The CCSVI treatment seems to have the fewest risks, but how long should I wait, or delay other treatments, while working out a way to get treated for that, if the scans show that it's even called for? (I am going to be scanned early next week).
I am beginning to distrust my own judgement a bit, as I find I am more and more judging these things emotionally, and less based on available data.
Being the research freak I am, and having some family members help out, I quickly found Dr Slavin's stem cell program and signed up. I was living in Israel at the time, and he is at the top of the lists of Drs to work with for stem cell therapy, so that much of the decision was easy.
I also soon started on a 3.0 mg daily dose of Naltrexone (LDN) and have since been upped to 4.5 mg daily. I am not sure it is helping at all, though, even at the higher dose. I am feeling less downtrodden, so maybe that's the effects of the endorphin modification, but other symptoms haven't changed.
Because of circumstances outside of their control, Slavin's team wasn't able to get me a spot in the hospital for treatment for longer than usual. The extraction was quick and absolutely painless, at least.
While waiting for a spot in the hospital, I learned of alemtuzumab (CamPath 1H). I've been speaking with a doctor in the US who can and will prescribe it off-label.
While waiting for progress on that front, I learned of Zamboni's research in Italy and it's growing following in North America. I quickly found a place to be scanned in my home city, and I am discussing the subject with a vascular surgeon who is considering starting an MS study - scans and treatment.
Now, finally, Dr Slavin's team has a spot for me.
I have been seeing several doctors in Canada and in the US, but I haven't decided on anyone as my primary physician.
I could use advice on how to proceed. What should I pursue first? The CCSVI treatment seems to have the fewest risks, but how long should I wait, or delay other treatments, while working out a way to get treated for that, if the scans show that it's even called for? (I am going to be scanned early next week).
I am beginning to distrust my own judgement a bit, as I find I am more and more judging these things emotionally, and less based on available data.