Looking for advice/sugestions on what to do next

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Re: Looking for advice/sugestions on what to do next

Postby vesta » Wed Jun 12, 2013 6:38 am

You are right, I should change my post to read:

"Delay Drugs One Year OR re-inforce your healing WITH drugs by optimizing your nutrition and treating the blood reflux.

Learning about the blood reflux changed my life by allowing me to stop attacks. I do insist on this, had I known it 20 years ago I wouldn't need a cane to walk today. More later.
Do read my main paper to better understand what I'm saying.

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ReLooking for advice/sugestions on what to do next

Postby Ladymac » Wed Jun 12, 2013 7:09 am

Good morning Vesta,

I did read the whole paper. Like you, it's been a long and hard battle. With the Internet, which didn't exist back then, we can now review and stay on top of different research and studies. That is a blessing.

I do know one thing. Many things we now I didn't think would be in my lifetime. Nutrition is a fight for me and all the years that have taken away things from me cognitively, physically like you and I with a cane, I know that I am doing the best I can with the information I can gather, as long as I don't mess up the regimine I personally agreed to do with my MS Specialist. And with that, I am doing well considering all the other issues physically that have come about.

Did you see that there is going to be an online webforum in June on CSVI on the National MS Society Website? I am going to email them today and try to find out more about it and some of their other free seminars.

We are in charge of ourselves. I am glad we have this dialogue.

Blessings,
Blessings,

Ladymac
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Re: Looking for advice/sugestions on what to do next

Postby Rick1866 » Wed Jun 12, 2013 8:12 pm

I will have an appt.(just have to set it up) with an MS specialist very soon. With all the research I have been doing in the last couple weeks Theres really only 3-4 dx's these issues could be. But I will leave that to the specialists instead of my regular doc's DX'ing without the proper tests and just guessing.

I need to get a definate answers from the specialists before I start thinking about treatment methods,but thank you for the last few posts it's alot of info I had not considered but I need to see what the spacialist find first.

Thanks
Rick



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Re: Looking for advice/sugestions on what to do next

Postby Ladymac » Thu Jun 13, 2013 1:25 pm

Vesta,

Just spent a few hours reading more research results re: CSVI. Dr. Zamboni's patients were all on DMD while having their testing of CSVI. Also, just found several of the results from various tests of Zamboni's theories and review of his submitted reports from Italy, France, UK, Germany and England. You may want to follow the links on the National MS site to reading some of the papers just submitted by the various testing. Not only does it prove unfounded, no difference between people with or without MS with the blood reflux, but also several severe dangerous consequences. Here is a recently published link into the National Library of Medicine with from a group with testing and collaborative research from Germany, UK and the Netherlands. It's a slow complicated read, because it is a Scientific Published Paper of the Results, however, it is very enlightening.

http://www.ncbi.nlm.nih.gov/pmc/article ... 01331a.pdf

Still reading other articles, will pass on more under the more appropriate forum you started about "delaying drugs for a year" rather than crowd newbies brains with some of these technical research issues. I know when I started down the path of trying to figure things out, I would have appreciated making sure that I was being properly diagnosed before looking into what I was going to do about it.

Thanks,
Blessings,

Ladymac
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Re: Looking for advice/sugestions on what to do next

Postby vesta » Sat Jun 15, 2013 7:14 am

Hi Ladymac:
I've looked at the site you suggested and will comment on it soon. Thanks.

For Rick1866:

Please read the following exchange re the article I posted separately from my response to yours: Delay Drugs One Year OR...
I realize telling someone who is already on DMDs that it might be a mistake could be seen as both unhelpful and offensive so I changed to title.

Quotes from post Delay Drugs One Year OR... on Drug Pipeline

Hi dlynn:
Thanks for the comment. I realize that if someone is on DMD's it isn't helpful to suggest that taking the drugs might be a mistake, especially since there is so much fear related to the disease and so many variables. If one hasn't yet started the drugs, I would hope one seeks alternative thérapies, but usually it's best to find a healing "Partner" - a naturopath or kinesiologist ? because it's easier if one has some guidance. I also know it's hard to believe removing glutens from the diet could make a difference. I have been "liberated" by the blood reflux theory because I've figured out how to stop setbacks.

Unfortunately most Neurologists seem incapable of reasoned discussion on the issue. It's "I'm the boss, shut up and submit." It's like entering a penal colony and the fellow inmates seem bent on enforcing conformity to the rules. Thanks again.

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dlynn wrote
vesta,
When I mentioned Dr. Zamboni and CCSVI to my Dr., he was not interested (end of discussion!) but wanted me to go on Tysabri.
That's when I decided to move on...

vesta responds
dlynn,
I have the impression Drs are getting some kind of incentive from the Drug company to put patients on Tysabri. It can lead to a brain infection and death. I think it's the last thing to try if going on a DMD. Also, there is a drug which causes the bones to dissolve? a necrosis? Do you know which one? If one does go on a drug, one should avoid anything that causes a permanent injury. Well, that's my opinion.

dlynn
vesta,
That's the impression many have re. drug companies. I do not know which drug causes bones to dissolve, is it an ms drug?
My dentist would not prescribe steroids because they weaken the bone. That is how I understood it. Maybe you are thinking
of steroids. Actually, that was what my neuro. prescribed for ON, that made me so very sick. For 15 of the 20yrs. since my ms dx,
I have not taken any of the DMDs. I had the procedure for CCSVI and It was the only treatment that alleviated my symptoms, thank God

vesta writes june 15, 2013
Hello dlynn:
I found the drug, yes, steroids, marc stecker reports that he developed Avascular Necrosis in his hips after prolonged dose of IV Steroids and this is a very painful condition.

"Avascular necrosis (also osteonecrosis, bone infarction,[1] aseptic necrosis, ischemic bone necrosis,[2] and AVN) is a disease where there is cellular death (necrosis) of bone components due to interruption of the blood supply.[3] Without blood, the bone tissue dies and the bone collapses.[2] If avascular necrosis involves the bones of a joint, it often leads to destruction of the joint articular surfaces. (see Osteochondritis dissecans)." (quote from Wikipédia)

I would avoid both steroids which might lead to this condition,
as well as Tysabri.

Recently Doctors have been calling in patients to begin Tysabri, even bullying them into taking it, and it gives the impression they are getting some kind of "kickback" from the drug company. That might be too strong a term, but forcing someone into taking a potentially harmful drug against their will deserves a strong condemnation. I am curious about your CCSVI treatment if you want to discuss it. Note (I subsequently found exchanges on the subject dlynn made with Dr Sclafani on the "Dr Sclafani answzers some questions" thread)
Thanks,

here is info put up by want2bike

Want2bike Feb 24 2013 this is ms

Why me. It is because you have a gene which is related to MS and something in your enviroment has turned it on. It is important that you listen to the right doctor. Dr. Bergman and Dr. Hyman can explain it to you. The wrong doctor will give you toxic drugs which will make you sick. The Lord helps those that help themselves. If you listen to the wrong doctor the Lord cannot help you. Check out the diet section and get a healthy diet and you can heal yourself.

http://www.youtube.com/watch?v=zGmyUppmt-g

http://www.youtube.com/watch?v=THddIqz9 ... re=related

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.facebook.com/notes/ccsvi-in- ... 1295097210

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&


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Re: Looking for advice/sugestions on what to do next

Postby Ladymac » Sat Jun 15, 2013 9:41 am

Vesta,

Rick has not been diagnosed yet! No one should mess around with anything until they are properly diagnosed. Please give those that are not diagnosed a break and let them find out what is what from a Specialist at a MS Center here in the USA which there is none I know of that is forcing and pushing people onto any drug, including Tysabri. Sometimes people just shout out at the mouth and there is no proof.

If someone is going to an actual MS Center, not a Neurologist who "sees" MS patients, an actual center and sees an MS Specialist Neurologist who is calling people in and telling them they have to go on any specific drug, let's see actual proof. It can easily be checked out.

And again, enough with the CSVI no drugs issue. I already gave you the actual proof that Dr Zamboni had his people on DMD and his research has been reported by several research centers around the world to have unsubstantiated claims that are still being vetted by 5 different Countries involved in this Global Research to get to the bottom of this. We are all waiting for the research to be completed and reported properly from each of the 7 Teams.

Let's stop scaring people and before we write something, we need to check it out and put it on the proper posting area and in the proper context. It's just too much data coming in pieces without the whole story from different places.

Thank you.
Blessings,

Ladymac
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Re: Looking for advice/sugestions on what to do next

Postby vesta » Sat Jun 15, 2013 10:40 am

Ladymac wrote:Vesta,


And again, enough with the CSVI no drugs issue. I already gave you the actual proof that Dr Zamboni had his people on DMD and his research has been reported by several research centers around the world to have unsubstantiated claims that are still being vetted by 5 different Countries involved in this Global Research to get to the bottom of this. We are all waiting for the research to be completed and reported properly from each of the 7 Teams.

Thank you.


Hello Ladymac:


I will discuss your "actual proof" later. Below is a good example of how MS Societies go about disproving CCSVI

"RnRrider of the French ForSeps.org wrote a summary of the Italian
MS Society's (AISM) 2 year "controlled" study of CCSVI which was recently
presented at the Lyon ECTRIMS conference. Directed by the Neurologist Dr.
Giancarlo Comi of the University of Milan and his colleagues, given the name
CoSMo, 35 clinics in Italy participated while 107 clinics were excluded. Early
on Dr Zamboni participated in the study but then pulled out, denouncing the
protocols which he felt would lead to inaccurate, biased results. Apparently the
only diagnostic tool was a Doppler Sonogram undertaken on 1,874 participants,
1,165 with MS, 376 controls and 226 other neurological diseases. Only 3 % of MS
were "positive", slightly less for the controls. Conclusion, the CCSVI MS theory
was pronounced dead and finished, this was their final word. (Interestingly, 89%
of the positive results found at local clinics were declared invalid by the
central examiners.) The Italian MS Society spent $2 million on the study.
This is the first time that a national MS Society has definitively declared the
CCSVI link to MS theory of no further value. (All but one of the principal
researchers have links to major drug companies List to follow.)

It looks like the Semmelweis reflex is alive and well in Italy.

Comi declared having received consultation fees for participating in consulatitive comittees
for Novartis, Teva, sanofi-aventis, Merck Serono, et Bayer Schering. Des
honoraires de conférencier de Novartis, Teva, sanofi-aventis, Merck Serono,
Biogen Dompé, Bayer Schering, et Serono Symposia International Foundation .
Mancardi declared having received honoraries for conferences and
fees for attending meetings as well as financial support for research with Bayer
Schering, Biogen Idec, sanofi-aventis, Novartis et Merck Serono.
Stolz declared having no concerned financial interest."

I posted this on ThisIsMs.com on Oct 20,2012. "phlebologist" commented that the report was given a standing ovation by the Neurologists present. Weren't they happy to believe that a study designed to "prove" Dr. Zamboni wrong had fulfilled their desires. This just goes to show the uphill battle MS patients must fight to get effective treatment.

We can all decide for ourselves, why object to information?

PS. I have a better idea. Check out: You Tube "Minding Your Mitochondria: Dr. Terry Wahls at TEDxIowa City"
She was treated at the MS Center Cleveland Clinic - Chemotherapy, Tysabri etc and finally turned to nutrition. Good visuals. One thing she doesn't mention there but on another interview is that she also stimulates her back muscles which in my opinion stimulates the blood circulation from the brain - thus using nutrition plus treating the blood reflux.

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Re: Looking for advice/sugestions on what to do next

Postby Rick1866 » Sat Jun 15, 2013 1:58 pm

vesta,
Honestly I look forward to reading all related articles to help better understand & educate myself more on the causes & symptoms of my issues. It has been very exhausting research up to this point and has my mind spining out of control in many different directions looking for answers about the many possibilities.
Looking into treatment type articles is also helpful to an extent but is difficult to treat the unknown and acually seems to be abit on the dangerous side to ones health.

After watching the video with Dr bergman (the other links have been removed so I could'nt watch/read them).
My take away is diet seems to be the number one cause and effect of all issues,and knowing the cause of the issue is needed to determine how to treat the issue by itself and the other issues will fix themselves. (Im not convinced)
So lets use MY personal experience on the treatment side of things.
A little over a year ago my PCP & neuro docs determined that my diet & weight were the causes of my symptoms so off to the dietrionist/nutritionist they sent me.
Now to be fair I learned alot about how a healthy diet is good,basically the the diet lady found that eating smaller meals during the coarse of the day and less red meat & eating more fruits & veggies was more benefical to me and it helped me lose almost 30lbs in that time. Good right?
Not exatcly last month I went for more blood tests requested by neuro.
The results of those findings are my B12 & vitamin D are extremly low, almost to the dangerously low level her words not mine.
So now lets back up a bit I have always been been a low energy type person since probally the age of 8-10.
and not a big fan of doctors exept when dealing with cuts(stitches) & broken bones because I really had no need for them otherwise because I felt relativly heathly with no need for concern.
So when I started having problems 6 yrs ago with sitting/walking I was looking for the reasons why,because prior to my issues begining 6 yrs ago ago I used to be able to walk and do things(chasing a trout stream,metal detecting,rock hounding) type activities without issues and only eating once a day when I was hungary and now I cant do any of them without issues for more than 1-1 1/2hrs.
So the big question is WHY?
Just in the last couple weeks I have been searching for the answers myself and that research has led me to basically force my PCP to let me go see qualified specialits to eliminate the many possibilities of the many things that could be causing the issues.

I do however think that finding the cause of the issues and treat them.
It seems to me a better way to approach things than to treat unknown facts and self doctoring.

Now back to Dr berman his approach seems to be knowledgable enough,but after watching the video,one thing I noticed was in the begining he stated that in each individual there are 25,000 DNA bands and only25,000,but later in his talk, on one of the pictures in his slide show it stated there were 30,000 bands and that seems contradictory and a bit manipulative to make poeple think he is the greatist gift to all mankind.
Now with out a doubt he has possibly helped lots of people with his approach.
But the question has to be asked.
Is his approach and healing certain issues possibly supressing a more dangerous issue that could be fixed or a different approach taken knowing the exact reason for the issue even though the individual gets relief from the symptoms of the suspected cause?
His approach seems to be more focused on healing the effect of the issue and his research seems to indicate he has possibly found the cause for alot of the issues and possibly ways to prevent future issues or even maybe cure them does anyone know for sure?
So back to my issues the diet approach they used actually depleted my B12 and vitamin D to dangerous levels and didnt help me one bit but infact made things worse.
So will getting my B12 level help give me more energy? most likely YES because that seems to be the cause of low energy,but what good is more energy and wanting to be more active going to do for me if my ability to walk causes more fatigue and weakness to my legs. Create even more discomfort and frustration?
Will adding more vitamin D help repair the nerves that are causing my issues? or is the damage to the nerves not repairable and my ability to walk & sit without issues permanant?
At this point all Im looking for is the cause as to why my legs dont work right when the used to work fine untill about 6 yrs ago.
Then figure out what I need to do to correct it which will be where the treatment aspect comes in to play.

Rick
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Re: Looking for advice/sugestions on what to do next

Postby Ladymac » Sat Jun 15, 2013 3:48 pm

WOW You get a standing ovation. You have your eye on the ball. Find out what, why and how to deal with things then. Nice!
Blessings,

Ladymac
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Re: Looking for advice/sugestions on what to do next

Postby Rick1866 » Sat Jun 15, 2013 5:24 pm

Ladymac wrote:WOW You get a standing ovation. You have your eye on the ball. Find out what, why and how to deal with things then. Nice!


Thank you,Thank you!!
But alot of the credit goes to you,because of the post that said that "I should wait and talk to a qualified specialist". at that point I was micro analizing every little symptom and causing my brain to go into overload mode Instead of thinking of the big picture.
Im sure there will be plenty of time for that later once things begin to get figured out.

Rick
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