Something I am Trying: Possible Non surgical CCSVI Treatment
Posted: Tue Jan 12, 2010 5:56 pm
NOTE: I do not condone the use of beta blockers due to possible bad coughing side effects. I AM interested in hearing from people who also have high blood pressure and any effects that ace inhibitor or Angiotensin Receptor Blockers (ARBs) might have on their MS if they take them
((Correction above and below, Lisinopril is an ACE Inhibitor, I mistakenly typed beta blocker. I appreciate people's correction on that. ))
Hello all,
I am new here. I am glad to finally find an intelligent, thoughtful and informative MS community. I was trying to start a Journal on this (so far its not working.)
I live in Baltimore Maryland (well north of it). I was diagnosed with Relapsing Remitting MS in July of 2008. I am 46 years old. I had been exhibiting symptoms for about 2 or 3 years prior.
I had read an article by Bruce Goldman, a journalist for the Stanford School of Medicine regarding Dr. Lawrence Steinman's research which involved giving mice with and MS like disease, the ace inhibitor Lisinopril. Ace Inhibitors (as you may know) are medication for high blood pressure. The mice walked again.
I do have high blood pressure, and a rapid pulse. I was prescribe Avonex, which quite bluntly, is from hell. I felt terrible and it was not helping. In fear of PML, I did not wish to use Tsabri. I am currently using Copaxone (which at least does not make me feel sick, but does not really help either, that I can tell).
Based on this article I asked my regular doctor, internal medicine specialist, if I could try Lisinopril. (My neurologist was very negative on it, and got mad when I asked about current research. I felt he really is not up on MS research at all.)
I started Lisinopril, and within two days my 'ataxia' almost went away. I could curl the toes in my right foot and bend my ankle up again.
I contacted Bruce Goldman regarding my experience and he put me in touch with the research department. Bear with me . .this has to do with CCSVI.
This is the article published by Bruce Goldman:
http://www.eurekalert.org/pub_releases/ ... 081209.php
I wrote to them and they were very interested in what I was doing. Unfortunately, ace inhibitors such as Lisinopril, have a bad side effect of a HORRIBLE dry cough for a lot of people. I was one of them. I had to go off of it.
Researchers at Stanford were kind enough to work with me in communicating with Dr. Kimmel (internal medicine). I was sent their research paper on this along with some basic information. I did not understand this paper. I presented the correspondence and this research paper to Dr. Kimmel.
Honestly, I did not know that ace inhibitors worked by somehow relaxing the veins to allow more blood through, making them more pliable i guess. I did not understand the research paper. I just knew it made a mouse walk. I have MS . .I will try anything MS stinks!!
When I came across the Canadian Documentary on Dr. Paolo Zamboni I was amazed and very happy. Something FINALLY clicked as to why the myelin was being destroyed.
I created a web page for Dr. Kimmel with the video and the thread stickied at the top of the CCSVI forum where people were posting what was going on with treatment for CCSVI. I also sent him a hard copy of Zamboni's paper, Dr. Steinman's paper and the thread regarding those who have been treated for CCSVI here (stickied at the forum)
http://www.reallynews.com/zamboni
I then made an appointment with Dr. Kimmel to discuss all of this. He was at first skeptical. But observing the movement of my toes and ankle, he kept an open mind. I think he was very interested in this (especially with concern at my rapid pulse, that there was not another reason for).
We tried another ace inhibitor (Quinopril) with same miserable consistent cough. The per the information provided and suggestion of Dr. Steinman, there was another blood pressure medicine called an Angiotensin Receptor Blocker (ARB) which did the same sort of function on veins but did not cause the cough.
SO I am trying this right now. Guess what? My balance again has somewhat improved. (I am on day 4 of medicine, and it starts to really do its thing in about 10 days).
So I believe Stanford’s researchers are on another angle to this and a medication treatment as opposed to surgery. Some of them are very skeptical about jumping into surgery for this and advised one person died from the procedure and another had to have an open heart operation due to the stent moving to the heart.
I am very lucky and honored to be in this dialog with Stanford. I am hopeful it will eventually lead to other things besides surgery that can be an effective treatment for CCSVI.
So I believe that 'opening up' veins may help. I am interested in hearing others experiences.
(I know ace inhibitors such as Lisinopril or Quinopril may cause bad and harsh coughing. it does for a lot of people (like me). What about ARBS such as Candesartan (which does not cause the cough). Any experiences to share?
Thanks!
Judy
RRMS, Diagnosed July 2008
Baltimore, MD USA
((Correction above and below, Lisinopril is an ACE Inhibitor, I mistakenly typed beta blocker. I appreciate people's correction on that. ))
Hello all,
I am new here. I am glad to finally find an intelligent, thoughtful and informative MS community. I was trying to start a Journal on this (so far its not working.)
I live in Baltimore Maryland (well north of it). I was diagnosed with Relapsing Remitting MS in July of 2008. I am 46 years old. I had been exhibiting symptoms for about 2 or 3 years prior.
I had read an article by Bruce Goldman, a journalist for the Stanford School of Medicine regarding Dr. Lawrence Steinman's research which involved giving mice with and MS like disease, the ace inhibitor Lisinopril. Ace Inhibitors (as you may know) are medication for high blood pressure. The mice walked again.
I do have high blood pressure, and a rapid pulse. I was prescribe Avonex, which quite bluntly, is from hell. I felt terrible and it was not helping. In fear of PML, I did not wish to use Tsabri. I am currently using Copaxone (which at least does not make me feel sick, but does not really help either, that I can tell).
Based on this article I asked my regular doctor, internal medicine specialist, if I could try Lisinopril. (My neurologist was very negative on it, and got mad when I asked about current research. I felt he really is not up on MS research at all.)
I started Lisinopril, and within two days my 'ataxia' almost went away. I could curl the toes in my right foot and bend my ankle up again.
I contacted Bruce Goldman regarding my experience and he put me in touch with the research department. Bear with me . .this has to do with CCSVI.
This is the article published by Bruce Goldman:
http://www.eurekalert.org/pub_releases/ ... 081209.php
I wrote to them and they were very interested in what I was doing. Unfortunately, ace inhibitors such as Lisinopril, have a bad side effect of a HORRIBLE dry cough for a lot of people. I was one of them. I had to go off of it.
Researchers at Stanford were kind enough to work with me in communicating with Dr. Kimmel (internal medicine). I was sent their research paper on this along with some basic information. I did not understand this paper. I presented the correspondence and this research paper to Dr. Kimmel.
Honestly, I did not know that ace inhibitors worked by somehow relaxing the veins to allow more blood through, making them more pliable i guess. I did not understand the research paper. I just knew it made a mouse walk. I have MS . .I will try anything MS stinks!!
When I came across the Canadian Documentary on Dr. Paolo Zamboni I was amazed and very happy. Something FINALLY clicked as to why the myelin was being destroyed.
I created a web page for Dr. Kimmel with the video and the thread stickied at the top of the CCSVI forum where people were posting what was going on with treatment for CCSVI. I also sent him a hard copy of Zamboni's paper, Dr. Steinman's paper and the thread regarding those who have been treated for CCSVI here (stickied at the forum)
http://www.reallynews.com/zamboni
I then made an appointment with Dr. Kimmel to discuss all of this. He was at first skeptical. But observing the movement of my toes and ankle, he kept an open mind. I think he was very interested in this (especially with concern at my rapid pulse, that there was not another reason for).
We tried another ace inhibitor (Quinopril) with same miserable consistent cough. The per the information provided and suggestion of Dr. Steinman, there was another blood pressure medicine called an Angiotensin Receptor Blocker (ARB) which did the same sort of function on veins but did not cause the cough.
SO I am trying this right now. Guess what? My balance again has somewhat improved. (I am on day 4 of medicine, and it starts to really do its thing in about 10 days).
So I believe Stanford’s researchers are on another angle to this and a medication treatment as opposed to surgery. Some of them are very skeptical about jumping into surgery for this and advised one person died from the procedure and another had to have an open heart operation due to the stent moving to the heart.
I am very lucky and honored to be in this dialog with Stanford. I am hopeful it will eventually lead to other things besides surgery that can be an effective treatment for CCSVI.
So I believe that 'opening up' veins may help. I am interested in hearing others experiences.
(I know ace inhibitors such as Lisinopril or Quinopril may cause bad and harsh coughing. it does for a lot of people (like me). What about ARBS such as Candesartan (which does not cause the cough). Any experiences to share?
Thanks!
Judy
RRMS, Diagnosed July 2008
Baltimore, MD USA