i met with my neuro this week

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i met with my neuro this week

Postby shaight » Thu Jul 21, 2011 8:29 am

during my appointment i asked her what she thought of stem cell procedures. her reply was "i have just become very interested" with a lot of optimism in her voice. she continued to say that there is a study that they are hoping to be a part of in the near future. she did not elaborate on the study, but she did mention it was involving several clinic/hospitals.

i was just glad to hear that my neuro had an open mind. hopefully it will spread to all the neurologists out there.
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Postby Asher » Thu Jul 21, 2011 8:55 am

Hi shaight, how good to hear of an open minded neurologist who is willing to look beyond here discipline. The way I see it, if MS is indeed an auto Immune disease (which most serious research seems to support, including the high success rate of HSCT) than neurologists can play a key role in the diagnosis, but they have no business in the treatment. It should be handed over to immunologits and hemathologist. I bet this is what the MS landscape will look like once the HSCT phase III trials will be completed and FDA approved.
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Postby packo » Thu Jul 21, 2011 10:58 am

Asher wrote:Hi shaight, how good to hear of an open minded neurologist who is willing to look beyond here discipline. The way I see it, if MS is indeed an auto Immune disease (which most serious research seems to support, including the high success rate of HSCT) than neurologists can play a key role in the diagnosis, but they have no business in the treatment. It should be handed over to immunologits and hemathologist. I bet this is what the MS landscape will look like once the HSCT phase III trials will be completed and FDA approved.


I disagree with you, Asher. Neurologist MUST BE an essential part of the team, let me illustrate:

When I was preparing for Israel and exploring my options I looked under every rock and tried to find as much as I can. In the beginning, HSCT was performed in a much more brutal manner, for example they even used total body irradiation to combat MS, not to mention that much more cytostatics were used. Such an approach proved to be unnecessary and very risky (I witnessed some very nasty situations!), not just because there were some deaths, but also because the existing damage can be compromised and enhanced – this can result in worsening the patient’s condition. The HSCT might work well on a theoretical level from the hematologist perspective, but in MS (most often) it is not a matter of life and death. What I am trying to say, the presence of neurologist is essential, MS is not leukemia (in the case of leukemia you either die or run afterwards), it is important that the neurologist and hematologist communicate because neurologists have enormous experience with MS and only in this manner we can maybe expect even better and less invasive procedures in the future.

I just remembered something I mentioned before on this forum, I will write it again – when I was in Israel, Dr. Karussis (neurologist) and Prof. Slavin (hematologist, immunologist) jointly came to conclusion that the absence of new lesions in my case might be attributed to Novantrone. Dr. Karussis in this case played a major role, he had enormous experience tith both animals and humans. Not to mention that HSCT is not for everybody and every condition, and that is primarily in the neurologist’s area.
Last edited by packo on Thu Jul 21, 2011 11:15 am, edited 2 times in total.
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Postby Asher » Thu Jul 21, 2011 11:11 am

Packo, your point well taken, provided neurologists understand where and when they need to hand over.
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Postby georgegoss » Thu Jul 21, 2011 2:37 pm

packo wrote:
Asher wrote:Hi shaight, how good to hear of an open minded neurologist who is willing to look beyond here discipline. The way I see it, if MS is indeed an auto Immune disease (which most serious research seems to support, including the high success rate of HSCT) than neurologists can play a key role in the diagnosis, but they have no business in the treatment. It should be handed over to immunologits and hemathologist. I bet this is what the MS landscape will look like once the HSCT phase III trials will be completed and FDA approved.


I disagree with you, Asher. Neurologist MUST BE an essential part of the team, let me illustrate:

When I was preparing for Israel and exploring my options I looked under every rock and tried to find as much as I can. In the beginning, HSCT was performed in a much more brutal manner, for example they even used total body irradiation to combat MS, not to mention that much more cytostatics were used. Such an approach proved to be unnecessary and very risky (I witnessed some very nasty situations!), not just because there were some deaths, but also because the existing damage can be compromised and enhanced – this can result in worsening the patient’s condition. The HSCT might work well on a theoretical level from the hematologist perspective, but in MS (most often) it is not a matter of life and death. What I am trying to say, the presence of neurologist is essential, MS is not leukemia (in the case of leukemia you either die or run afterwards), it is important that the neurologist and hematologist communicate because neurologists have enormous experience with MS and only in this manner we can maybe expect even better and less invasive procedures in the future.

I just remembered something I mentioned before on this forum, I will write it again – when I was in Israel, Dr. Karussis (neurologist) and Prof. Slavin (hematologist, immunologist) jointly came to conclusion that the absence of new lesions in my case might be attributed to Novantrone. Dr. Karussis in this case played a major role, he had enormous experience tith both animals and humans. Not to mention that HSCT is not for everybody and every condition, and that is primarily in the neurologist’s area.


Just to kick in my two cents for what it's worth (maybe nothing). . . .

I do (really!) appreciate your perspective Packo. I have no specific disagreement (you've "been there, done that"). Especially that Dr. Karussis (neurologist) worked with you so that you could receive HSCT. A very good thing and good outcome.

However, I would have to come down more on the side of what Asher is saying. Although there are a few neurologists in the world that will support HSCT for MS (such as Dr. Colin Andrews in Australia and Dr. Mark Freedman in Canada), I have only seen evidence that the vast majority (99%+) of neurologists world wide are just obstructionist when it comes to considering HSCT for people with MS. Because neurologists in general have no education, training or experience in the underlying hematological-etiology of autoimmune disorders or stem cell transplantation, they are usually not supportive of the procedure. (Neurologists are no more qualified to determine HSCT suitability for MS as they are in using it for Lupus, HSCT also being the most effective treatment for that autoimmune disorder.) Except for a handful of existing neurologists today that support HSCT, I have seen no others that do. And there is currently no alternative therapy of any type anywhere, drugs included, that has even a remote possibility to achieve what HSCT has been able to demonstrate & accomplish for MS. Your own case is a good example of this. Neurologists certainly have the capacity to be helpful, but only if they want to be. The question in my own mind that I would pose is "as of today, collectively do neurologists help more, or hurt more (for recommending HSCT for MS)?" If they just automatically reject every MS'er from HSCT treatment without valid criteria (as most do), then how is that helpful?

Back to what Asher said. . . . I think definitely neurologists should "diagnose" MS (since it manifests in the nervous system and other possible causes should be ruled out first), but following that let the doctors that know & understand the immune system and the hematological-origins of MS do what's necessary (HSCT) to "treat" MS to stop the underlying disease activity & progression. I'm not sure what (if anything) a neurologist can add to the HSCT treatment of an MS patient once it has been diagnosed.

As example, Heidelberg is the top stem cell transplantation center in Europe and they don't have a single neurologist on-staff associated with the transplantation ward. For good reason. As a specialty, neurologists rarely have in-depth understanding of the immune system and typically have no education or training in hematology, oncology or immunology which are the doctors that can (so far) best administer HSCT for treatment of MS. With the exception of the handful of aforementioned doctors, I wouldn't want a neurologist within a mile of my being treated via HSCT. I would rather have my dentist there. He's a much nicer fellow. And he could probably make sure I'm keeping my mouth clean.

Just a side note. . . thank you for correctly highlighting the HSCT phase I clinical trial work that used TBI. It is very unfortunate that several MS patients did die as a direct result of that unnecessary early treatment regimen. (That's why phase I trials are to measure "safety & tolerability," not efficacy. So they use a small population.) The good news is that there have been zero deaths (none at all) of any MS patients to receive HSCT treatment starting since the phase II trials (and currently into phase III). Even CCSVI treatment can't hold a candle to that kind of safety.

BTW. . . how's your (broken) leg doing? I sincerely hope that everything is healing well and that you are up and getting around well. I'm looking forward to the video of your disco dancing! :-)
Last edited by georgegoss on Fri Jul 22, 2011 7:54 am, edited 1 time in total.
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Postby packo » Thu Jul 21, 2011 4:24 pm

I still claim that the involvement of a good neurologist is essential for better understanding of HSCT in ms and for better results in the future-for finding less invasive and equally effective protocols, maybe even protocols tailored to the needs and condition of an every single patient.

I do not know about your experiences, my neurologist is very open-minded and educated, she even went to Israel with me. It is not just matter of life and death, as I said, one should be careful, because the existing damage can be compromised, the patients are not in the same condition….. The right neurologist monitors patient for months and years and his experience is very valuable, he knows a lot about ms and something about HSCT, just as oncologist knows a lot about HSCT and something about ms. Those two are in my opinion more valuable when working together.

Thanks for asking about the leg, it has healed, but it is shorter – I will have to discuss my options with ortophedist.
Last edited by packo on Thu Jul 21, 2011 10:15 pm, edited 1 time in total.
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Postby georgegoss » Thu Jul 21, 2011 5:49 pm

packo wrote:I still claim that the involvement of a good neurologist is essential for better understanding of HSCT in ms and for better results in the future-for finding less invasive and equally effective protocols, maybe even protocols tailored to the needs and condition of an every single patient.

I do not know about your experiences, my neurologist is very open-minded and educated, she even went to Israel with me. It is not just matter of life and death, as I said, one should be careful, because the existing damage can be compromised, the patients are not in the same condition….. The right neurologist monitors patient for months and years and his experience is very valuable, he knows a lot about ms and something about HSCT, just as oncologist knows a lot about HSCT and something about ms. Those two combined are in my opinion more valuable when working together.

Thanks for asking about the leg, it has healed, but it is shorter – I will have to discuss my options with ortophedist.


Thanks Packo! I wish this forum had a "thumbs up" button like is offered on Facebook. I would push it for your post. :-)
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Postby shaight » Fri Jul 22, 2011 4:53 am

as we continued our conversation she stated it was obvious that i've been doing a fair amount of reading. she was quick to downplay CCSVI and did not seem to think much of the procedure. i guess from everything i've read i kind of feel the same way, but i am still open to it and wish the best for anyone going thru the procedure. she also spoke (with rolling eyes) about a recent conference she attended that turned into a huge debate/fight regarding CCSVI between a couple groups of neuros at their dinner meeting. apparently, everyone is not on the same page! ...as we know :D
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Re: i met with my neuro this week

Postby shaight » Mon Apr 09, 2012 11:41 am

well, i just met with my neuro again today after my second mri. i have two new lesions on my spine and a couple more in my brain. one was quite large. i have no real clinical signs of the lesions, so i'm doing ok. it is concerning how quickly or how much new activity i've had...above the norm.

after going over that i told her that i was proceeding down the road with dr Burt and his trial. again, she was very positive with me and did not discount the procedure whatsoever. although, she did think i was premature to go down that road stating it may be a little aggressive at this stage. she then asked about the criteria. i was wondering myself...i did not know where they had me placed in the edss score...which she then told me that i am a 1. but, considering the pattern i'm in right now that could certainly change at any moment. seems to me that i shall continue pursing dr burts trial as it takes time. in the mean time they have switched me off Avonex and on to Copaxone. i haven't started the copaxone yet, but hopefully my body will react favorably to that med.

again, the bottom line to this thread is that i have a neuro that is open to HSCT. it's nice to see someone not so narrow minded and blinded by the profession and training they have received.
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