This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all

I'm new here. I'm on Avonex since 2003 with RRMS. Luckily I've seen no major progression in my MS to this point. Is this a result of the medication I've been on? Or is it a result of leaving work and reducing my stressload? Last information I've seen on Avonex is that it provided a 29% chance of reduction in relapses. Is it the medication that's holding me where I am or my change in lifestyle. My neor can't answer that nor can anyone else. Is the drug therapy working for me? I don't know , but I stick with it becuase I'm holding steady.
A friend of mine hasn't been so lucky. Her MS hit her fast and hard. She tried Betaserum. Her rate of relapses stayed strong as well as the fact that she had adverse effectes from the drug. The neuro put her on Tsyabri her rate of relapses has never regressed noticably. She had adverse side effects from the tsyabri also. Her stomach just couldn't handle it and she had to go off of it. She was off it all summer and while she still had relapses, she looked and felt 20 times better. The nuero told her that she should be on some Disease mod therapy and saw no reason why tsabri would bother her. Guess what. Horrible side effectes again. Why does common sense not tell you that these drugs just don't agree with her.
With that said, why are our doctors willing to do trials (and I emphasize trials) with us as patients with diffentent drugs not knowing what the results will be? I know " there is a ----% chance that it will help you. Only a chance. Then you take this drug for the pain, another for the depression, another to help you sleep, etc etc
When we come across DR Zamboni's theory the medical community is somewhat hesitant to embrase it even though they have nothing concrete that significantly nail this disease down. MS or not, if we have blockages, why not open them up and see what this does for us. We all know the risks involved. What are the multiple risks involved with taking 5 differeent drugs for half of your life.
I'm not going to say we haven't made huge progress over the years with current therapies, but frankly its not good enogh. Otherwise we wouldn't still be researching this disease. I'm sure alot of doctors can find parts of this CCSVI theory to question. My guess is that we will start doing these procedures and not have all the answers for quite some time.
Rather that fighting to prove Zamboni wrong, why don't we work harder to prove this hero right. Do we keep pumping drugs and hoping for the best, or do we go with something that holds some promise with a positive attitude? Maybe this treatment won't work for everyone. If it helps a small percentage of us then that is progress and grounds for further research. I think this whole concept makes sense and will help a reasonable amount of Ms patients.
Untill Zamboni, we didn't have all the answers. With his theory we have the basis to nail this SOB of a disease down. Do we do more trials with drugs? Do we do aggressive trials and treatment with CCSVI. For someone like my friend there should be an option. For myself, do I be content to live my life with pain and tention and the other effects of this disease. That should be my choice and no doctor should be able to deny me the chance to explore this possibility. I can still walk, but I'd sure love to be able to feel anything other than pain in my legs again.

Mechanicallyinclined

I just had to tell you that I came to this same conclusion about 2 years ago. When I started reading your post, I felt like I was reading my own words, only you said it even clearer., especially this paragraph!

“With that said, why are our doctors willing to do trials (and I emphasize trials) with us as patients with different drugs not knowing what the results will be? I know " there is a ----% chance that it will help you. Only a chance. Then you take this drug for the pain, another for the depression, another to help you sleep, etc etc.”

My GP had me on Blood Pressure meds, Derol for my bladder, Zanex for a muscle relaxer, Ambien to sleep and Darvocet for pain. I was a mess, over weight, ached or hurt all over and had a constant headache for which I also took Excedrin for Migraines almost daily.

Like everyone of us here at TIMS I’ve been looking for answers since the first morning after getting the diagnosis. And all I had come up with so far, other than pharmaceutical drugs was diet and vitamin/herb supplementation; and the possible Candida albcans connection to auto-immune diseases. And that was it…a few other promising research projects going on out there, but nothing shaking up the MS society’s either.

After months of doing internet searches and following the various research I came to your above conclusion and I chose to take myself off ALL of my pharmaceuticals, just quit. Decided once and for all to follow my own gut feelings. I DON’T ADVOCATE THIS FOR ANYONE ELSE, THIS IS JUST WHAT I PERSONALLY DID. I started a strict diet, similar to what Ashton Embry advocates, then a year later I eliminated all sugar from my diet and in these last two years I’ve lost 60 lbs and have had drastic improvements in my health. The weight loss sure makes a big difference in how you feel and how you view yourself. I still have my MS issues though and seem to be progressing slowing, but thank goodness I haven’t had any exacerbations, knock on wood.

Then in October 2009 while following some lead in one of the many research sites I’d been on I googled some interesting word or supplement, or symptom, I don’t remember, I just know I ended up on TIMS and I haven’t left. I do remember it was one of the earlier threads where all our pioneers were sharing their thoughts and sharing the various research they’d found and then they shared what they understood collectively from the research.

It has been an unbelievable journey of discovery I been sweep up into and I couldn’t feel more at home with the idea of having my veins examined for stenosis by a professional, properly trained in Dr. Zamboni’s protocol. I absolutely want to know for myself and I also want to be able to do even this littlest of things to add to the research into MS and I feel that is my right.

I feel privileged to be a member of a group of individuals who are going the distance and a mile further. What a positive use of our energies. We’ve made a lot of headway by informing ourselves and sharing that with professionals interested enough to listen and do a little reading. I can't help but believe that if you are involved in ANY way with MS that you won't be able to take your eyes of CCSVI research until it plays out, one way or the other. Now I feel we are truly on the way to answers about Dr. Zamboni’s work and on our way to even more interesting discoveries.

Pandora’s box is open………and I for one am thrilled and excited!

Hi Ruthless

Thanks for the reply. I haven't had the guts to quit the drugs,but I do question their effectiveness in my case anyways. I just hate the side effects. Are there long lasting side effects from them? Who knows.
I wouldn't say you were right or wrong to quit your drug therapy nor would I advocate for anyone else to do it. We just know that there must be a better solution to our health issue and this just makes so much sense to me. (CCSVI) It almost makes me mad though because it sounds too simple to be one of the answers to our problem. I don't mean to downplay what is needed to diagnos restriced veins, but with the technology we have today how could this not be noticed by researchers before? Why would you not think that blocked veins would be a problem?
I've seen posts on this websight before, but just decided to join today cuz I wanted to spill my guts. I feel better now. Nice to meet you!

Nice to meet you too.

I know I read an early post were our pioneers wrote about why researchers hadn't found this before now and if my limited memory is correct, it was quite an informative thread. My problem is I haven't mastered the search program on here well enough to find my way back there. And I guess I used breadcrumbs on my backtrail, lol.

I just know it was harder and harder for me to accept being told, "We have no idea what causes MS and we don't have a cure for it either." Then the doctor's strongly suggest "You take one of a myraid of drugs that may or may not help your symptoms and may or may not slow your progression. But what the drugs will do is suppress your immune system, make you feel like you have the flu and may or may not damage your liver. So be sure and have your blood checked every 6 months." Talk about blind faith!

Yes, it was a hard decision to make, but my gut feeling was that I was poisoning myself, through diet, lifestyle, pharmacudicals and most especially sugar. I think the most sensible response for most MS'ers is to follow Zamboni's recommendation that patients continue on their current therapys.

And God bless our brave pioneers for making these discussions possible and keeping the information flowing.

Lora

Ruthless

Just wanted wanted to ad that you made a great statement here



Some people here have put alot of effort into informing tons of people on this issue through this websight. Thankyou very much!

Mechanicallyinclined

Mech,

I'm not sure about any of those drugs, as I have never had any of them recommended, and never been on any. Honestly, I've always refused them, in any case. But something that I have always done, is to try to find natural medications. It is necessary to either be knowledgeable, or to consult with someone who is. Some things can harm. Homeopathy is brilliant, in my extensive experience with it (and, arguably harmless).

There are many natural medicines, from peppermint up to digitalis (Foxglove). Peppermint eases tummy troubles, Foxglove can kill. I have found grape seed extract to be a very effective anti-inflammatory. After consultation with an experience naturopath, I take massive doses of it to ease relapse. It works very well, and the only contra-indication is the possibility of developing an allergy to grapes (and Argentinian red wine too). I have developed no allergy to my Malbec.

I have taken Pycnogenol on and off over the years as well, and it has clinically proven benefit for Chronic Venous Insufficiency and thrombosis in the legs - something I just discovered in the last few weeks. (I tell ya, that naturopath is brilliant, and gave me Pycnogenol back in 1993). I reckon that if it is indicated for CVI, it can't but have a benefit in CCSVI. It is loaded with catechins (chelation of iron), and all kinds of bioflavinoids in extremis.

I can't find the original article, but found this (on pycnogenol) - http://ang.sagepub.com/cgi/content/abstract/56/6/699. This article is also on PubMed, but I could not access it. There have been other studies that have shown similar benefit. Google it, but check the source.

Many foods are brilliant medicines too. Take a look at Ayurveda. There are herbs, spices and foods to tone the bladder, for dementia, for diabetes, digestion, heart and vascular, and so on. In many cases the medicine is in your back yard. The great thing about natural medicines is that there is something for everything, and they are complete in context.

/yammering

_________________
My name is not really Johnson. MSed up since 1993

I everybody, ihave to tell you that discovering this group here is a real delight for my soul!

I'm half blind since 1999. I was diagnose one year after... this neuritis.
Then, i start rebif...that made me so depress, than i started paxil (antidepressant)... it helped me for a short period and than i became totally hysterical...than a psychiatrist put me on lithium to calm myself...

Can you imagine someone whit MS whit rebif and on lithium.... I have been for almost 8 years like a zombi ( poor me). I dont know how a made it but i never stop working.... i needed money to survive...so with all this over medication that makes you totally amorphous.

I gained weight..... i became overweight... sleeping 12 hours a day...
I became very agressive...unable to have normal relation with people. What a nightmare... 2 years ago i stop rebif...lithium, i satrted swank diet, lost 40 pounds , started to exercise... I regain my lucidity...

All this ''medecine'' almost killed me.

I said to my neuro last year that a know i could not make a law suit...against the medical system but i felt betrayed by him and all the other.... He looked at me and said: '' i'm really sorry for you''

Last week i called his clinic to have and apointement to ask for a doppler and MRI ...there was this wondefrull message made by his so sympathetic secretary saying that they would not return any messages concerning CSSVI... This drove me insane

Since this, i'm reading this forum everyday....

I wrote to the best interventionist radiologist in my city... and his secretary called me the day after... She said: if you fax me a prescription from your doctor for a doppler and a MRI I will give you and apointement....

I saw this doctor in a private clinic who prescribe me to stop all this crap a took too many years...and propose me LNd... and swank and....

He gave me the prescription right away ...

I faxed it to this radiology in a major hospital near me.... and she called me back to say that they where fixing some things and the would call me soon....

I'm there... waiting... totally exited... anxious...with this rash of exzema.... that traduce my inner feling now....

I wrote to Dr smika... witing for and answer...

I printed all the protocol from smika...zamboni and the article where Zamboni eexplained his theory... After christmass i planned to shop and find a radiologist willing to study ''the good manner'' to perform those tests....

You... give me the stenght to do it...
bless you all!

The girl from Laval in Québec Canada

The more I read about different people's experiences with MS and drug therapy, the more I question it. I'm not advocating for people to stop their existing treatments. You do have to educate yourself though.
A few years back I stopped my Avonex injections under my own gut feeling. I talked to my neorologist about this when I met him next and he just got mad at me. He basically told me that there's no sense in seeing min further if I won't stay on the treatment. I'm sitting there thinking " so the only reason I can see you is if I stay on drugs" I was ripped offv at that idea. I did return on the drug therapy as I have stayed reasonably stable through the last number of years. I'm not thinking it's the drugs keeping me that way. I think it's the changes I've made in my life to reduce the stress.
I'm going to check into some of the recommendations some of you have given. There's a saying that goes "you are what you eat"

Betaseron left huge scars and I lost 97 lbs while on that drug. I have had this for 16 years and have been drug free for almost 8 of those. When I told my neurologist at the time that I wasn't going to take them anymore he told me not to come back since I can take care of myself.

CCSVI is the most important thing in my life right now. Letters and phone calls consume my day. I can almost hum all holed music now My experience from diagnostic technicians and Universities I have spoken with has been a cold one. I feel like they are putting the phone down while I am speaking.

Why is everyone so afraid of this? There is a lot of money to be lost but there is even more to gain.

I'm fighting for help and survival and people are just walking by and ignoring me. I am The Little Match Girl.

We have to support each other! This forum, his a safe place for us and it is also invigorating nourishing, and much more!

With all the work a lot of us is doing in his own place we can inspire the other... this is going to make the ''Butterfly effect'' ...

I'm speedy, anxious nervous with all this expectancy... My husband is trying to calm me with all this... He tells me to stop think i wont be able to be tested and operated if i need to...

I'm with you all... we can all together do great things!
The girl from Laval city in canada;)

I think part of our focus in the new year will need to be to really keep this issue of CCSVI a hot topic so all the public knows whats going on. It will be interesting to see what preliminary findings come out of new studies at UBC , Saskatoon , Buffalo ect.
IF CCSVI is found to be predominent in MS (and I'm sure it will) , we are going to have to really put pressure on our governments to speed this process up in our health care systems . We can't have research
drag on for years before action starts for everyone. I know there will be procedures to iron out as far as what works best, but that will always be improved with time. It's not as if this is truly uncharted territory as far as work with veins and stents. Perhaps thats one of the messages that really needs to be conveyed to the public to increase pressure on governments to take action on this. We can research this untill our feet turn blue and will not probably have all the answers. If CCSVI is a valid condition then treatments will have to start while research continues.
I'm not satified with current treatments and I'm sure 90 % of us aren't.
If somehow we have to organize demonstrations in front of our parliament buildings to keep this a hot topic and put the pressure on , I'm all for it.
Merry Christmas all and Best Wishes for the New Year!

Oh come on everybody!

There is nothing better in this life than the MS drugs! Ok, there might be one: neurologists. They know everything! I have used mine as a calculator:

What is the square root of 195364? 442! Wow!

It is said that St. John who wrote the apocalypse was a neurologist. So was Nostradamus.

Seriously now. There are NO MS therapies. Just treatments given to people with MS. Give me a sack of flour, 4 billion $, 500 idiots and 4 statistics gurus and I could make you a drug for ANYTHING. This is just ridiculous!

Therapy comes from the greek word "θεραπεία" (pron. therap'ia) which means "cure".
Treatment is translated as "αγωγή" (pron. agog'i) in greek, that comes from the greek verb "αγάγω" (pron ag'ago) which means "to lead, to guide smbd or sth.

So treatment is guidance to the "correct" path. But MS guidance is for sure towards a wrong path. Not to mention about cure...

What can really be done for MS? Symptom relief? NO! Cure? LOL, no! Slowing down of progression? Hell, NO! Then what?

Anything is better than what the specialists say (what makes a neurologist a specialist in MS? Something that would make a seismologist a specialist in house building, perhaps?) but what pisses me off is that they show things as if there has been real progress while there has been NO progress in MS drugs at all. I don't care how difficult it is. My job is difficult, too. But the end user DOES NOT CARE about it. End users demand solutions and whoever can't provide any to them is U-S-E-L-E-S-S.

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

I hate to sound ungratefull for the medical advances that we have made with MS. Obiously some of these therapies have made a difference in peoples lives. These therapies come with side effects . These therapies are not proven to guarantee results for people with MS. Every person that tries an MS drug is an experiment. If one doesn't work we try the next.
All I'm basically trying to say is that current medicine relies on drugs so much to solve our problems that they too often overlook new ideas like Zamboni's for the wrong reasons. The drug I'm taking has a 29 % chance of helping me . I don't even know if it's helping at all. The medical community is ok with this though. When someone mentions a procedure to them that has basically been done before with quite reasonable success (liberation treatment), there is hesitation to accept it.
We should be jumping all over this concept and giving it a true chance. I know research is starting on this, but with all the political crap that surrounds getting the process going............ the process is just too slow.
We should be able to do better.
Here's an interesting comparison to make. THe drug I take only has a 29 % of stopping further progression. The medical community accepts this because there isn't too much better than that. If procedures to help CCSVI were 29 % effective how will the medical community react? Interesting to compare that way huh? I think procedures to unblock our veins have a higher rate of success. If I can take that higher rate of effectiveness compared to my current 29 %, I'm going with it.

Merry Christmas to all
With our persistance I think we're in for a fantastic 2010

Mechanic,

You and I must be on the same DMD drug. I have often thought that the drug does not work for me since I seem to be on a slow downhill gradient since July 2006. But I dutifully take the drug because I am advised that "it works" to reduce relapses and lesions. I don't relapse or remit. I just have waves of symptoms.

You just expressed my feelings about CCSVI vs the CRABS much better than I can.

ozarkcanoer

Hi All,

We lost my step-son-in-law's mother to the drug, GENERIC NAME: azathioprine BRAND NAME: Imuran, Azasan in 1996.

"Azathioprine is an immunosuppressant, that is, a drug that is used to suppress the immune system. Azathioprine is used for preventing rejection of transplanted kidneys. Azathioprine also is used for the treatment of severe, active, rheumatoid arthritis. Non-FDA approved uses for azathioprine include multiple sclerosis, where several clinical trials have shown decreases in relapses but no slowing in progression of the disease. There also is limited data on the safety of azathioprine in multiple sclerosis."
"SIDE EFFECTS: The most common serious side effects of azathioprine involve the cells of the blood and gastrointestinal system. Azathioprine can cause serious lowering of the white blood cell count, resulting in an increased risk of infections. This effect is reversed when the dose of azathioprine is reduced or temporarily discontinued. Azathioprine can cause nausea, vomiting, and loss of appetite, which may resolve when the daily dose is reduced or divided and taken more than once a day. Azathioprine can cause liver toxicity (for example, in less than 1% of rheumatoid arthritis patients). All patients taking azathioprine require regular testing of blood for blood cell counts and liver tests to monitor for side effects of azathioprine."

And that is what her Neurologist had her on! She was informed and willing to take the risk because her exaserbations were so sever. That is what we all face with these drugs and so far that's all we've had. Possible help with symptoms, possible help with slowing progression with some of the drugs but NO CURE with any of them. She ultimately died from the side effects of the drug, namely, she deveoped lukemia. She was in her early 40's, in good physical shape until MS, an excellent tennis player and never got the chance to see any of her now four grandchildren.

Then when my sister was diagnosed with rheumatoid arthritis, in her early 50's, they put her on an immunosuppressant, but I'm not sure just which one, but she ended up with an infection where they couldn't bring her temperature down and she litterally boiled to death while I held her hand in the ICU ward.
This is why I have been so leary of taking ANY immunosuppressant MS drug. They are not cures and though I got talked into injecting Avonex by my FORMER Neurologist, after 2 years, I said ENOUGH!! I'm not willing to supress my immune system any longer! To me, that was and is just plain crazy. I went off the shots and turned to diet and supplements instead. And my continuing search for answers has lead me here and now I have hope that research into CCSVI may be the start of some real answers for MS treatment.