Should I start MS medication? What would you do in my shoes?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Should I start MS medication? What would you do in my shoes?

Postby zjac020 » Sun Dec 22, 2013 12:37 pm

Hi all,

First of all, I know this isn't a good question to ask as MS is so different in everybody that there is no "right thing to do" as such, but as usual I get more useful, practical and realistic advice from this forum than from any of the number of neurologists and doctors ive already spoken to.

As some of you know, i had my first minor (or so id like to think) first bout back in May this year, consisting of a weak right arm and leg, and a dropped right foot. I started recovering in 8 to 10 days, and in the MRIs that they performed as part of the diagnostic they found one active lesion on the cervical spine (which explained the bout) and old lesions in the brain, approx 6-7 small lesions on the right side, and another 2 on the left side which were even smaller. I had a lumbar puncture which also showed the usual bands associated with MS.

Although I recovered, those limbs are still now slightly weaker (and im right handed/footed), but its only noticeable when doing exercise and after a fair amount of it. I dont think I have had any more relapses, and I have only suspected of some back pains, but given the exercise regime I follow and changes in posture, most physios dont associate the muscular pain ive had to MS.

Since this all began I have made immediate changes to diet, exercise, vitamins&supplements (a very long list) and rest/sleep...all of which had major room for improvement in my life. I try to follow the key principles outlined by Wahls, Swank, OMS, etc. I also started LDN in October,and am currently on 4.5mg daily (night time dosing).

A follow up MRI 5 months later revealed no progression in lesions and no active lesions.

My doubt is on whether to start taking the usual CRABs. Out of three neuros ive seen, the one I consider to be the worst of them thinks I should have started on the usual meds. THe other two (very well known in their field and simply more up to date than the other), think that a conservative approach is not a bad idea given the small relapse, the fact that im still CIS and that im taking care of myself. However, everytime I read that something like Copaxone (i choose Copaxone as its more compatible with LDN) can help slow disease progression, I start wondering whether I should be atleast trying it. At the same time, it worries me that I will go from feeling the fittest/healthiest I have ever been, to "sick" due to having to inject myself and maybe put up with the injection side effects (which seem to be pretty common).

Given that doctors here (in Spain, Madrid) are very eager to look at MS as a likely diagnosis I am having to pay out of pocket for Lyme tests (will write up on that in another post) and other blood work. I guess Im not really hopeful about this being something else other than MS, rather that simply I want to be sure that I am definately dealing with MS.

So, my question to all of you is, would you start with Copaxone given my situation? I know, its a silly question, but i give a lot more thought and value to your opinions than to any doctors who are locked in to their big pharma studies and drugs.

Thanks in advance to all,
zjac
zjac020
Family Elder
 
Posts: 137
Joined: Tue Aug 20, 2013 11:50 am

Advertisement

Re: Should I start MS medication? What would you do in my sh

Postby vesta » Sun Dec 22, 2013 1:47 pm

Hi: I would consider treating the blood/cerebrospinal fluid circulation factor through massage, Tens self accupressure, acupuncture etc. Coupled with optimal diet and suppléments, you may be able to keep the disease under control without drugs. If I had known about the CCSVI issue, I could have stopped all progression. I'm quoting here an excerpt from the blog post "CCSVI: Three Treatment Options" taken from my site MS Cure Enigmas.net.

"In my opinion this gives rise to potentially THREE SOLUTIONS to the venous blood reflux phenomena associated with MS.

1) Relieve body tension or 2) Correct skeletal pathology or 3) Open blocked veins with venoplasty.


OPTION 1) RELIEVE BODY TENSION

This treatment option is the easiest and most accessible for most MSers. My site MS Cure Enigmas.net is meant to address principally the body tension factor which I believe in itself can trigger the veinous blood reflux leading to neurological damage. My approach is more practical than theoretical. I have a problem, I needed to find ways to deal with it. I trust my own experience, research and yes “radical” thinking can serve as the starting point to help others think through their own issues and find appropriate solutions.

DIET: My first healing beginning 1984 came through the treatment of a Kinesiologist/Nutritionist who determined food intolerances (to glutens, lactose, chemicals etc) and prescribed DETOXIFICATION, OPTIMAL DIET AND NUTRITIONAL SUPPLEMENTS. There have been many testimonies about impressive healing through diet alone. See Roger MacDougall, Dr. Roy Swank, Dr. Terry Wahls (You Tube: TEDx Iowa City “Minding Your Mitochondria”), or on the site This is Ms.com jimmylegs and for diabetics lyndacarol (leaky gut syndrome aka intestinal permeability) and Leonard ( A new concept for MS).

Some vein experts have said they can’t understand how diet change could possibly stop CCSVI blood refluxes. STRESS is the key word. Some foods can act as toxins against which the body mounts a tension-inducing defence. Tension alone can cause the blood reflux. Once removed, the body can relax to allow the blood flow unhindered through the CNS. And too optimal nutrition will heal any damaged tissue.

Unfortunately diet alone is not enough for me. I need other therapies to relax tension and enhance fluid circulation such as acupuncture, acupressure, kinesiology, French osteopathy or massage. (Dr. Wahl does more than diet as well since she electrically stimulates the meridian on her back which enhances blood/fluid circulation through the CNS). Swimming the crawl is by far the best therapy for me. A severe emotional trauma in 1987 triggered an attack even though I was scrupulously following my diet and now I realize I could have stopped it with blood circulation enhancement. In some circumstances optimal diet alone is insufficient.

When I read about “Liberation Therapy” summer 2010 I immediately requested an upper back/neck massage to send blood flow from the head towards the heart and it worked, I could stop an attack. Subsequently I treated myself with TENS Acupressure to open the blood flow, again with success. I’m convinced had I known this 20 years ago I wouldn’t need a cane to walk today.

Emotional stress, ANY stress, can force the blood into the CNS leading to an attack, at least in my case.

It is strange to me that vein specialists should doubt the power of emotion to impact veinous blood flow when one considers how blood rushes to the sexual organs given the slightest provocation." end of quote

Since I began doing Tens Self Acupressure summer 2010 I feel much better. It fills me with such regret that I didn't know this sooner, but if you have a form of MS similar to mine, you may be able to nip it in the bud.

Best of luck, Vesta
vesta
Family Elder
 
Posts: 347
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France

Re: Should I start MS medication? What would you do in my sh

Postby cheerleader » Sun Dec 22, 2013 3:10 pm

Hi zjac--
Sounds like you're doing all the right stuff. Good on you!
Here's neurologist Dr. George Ebers discussing the MS meds in a recent presentation
https://www.youtube.com/watch?v=OqY-_K1fYJY#t=859

Please notice that Ebers shows that relapses have no bearing on time to reach SPMS or the 6,8 and 10 markers on EDSS.
And they do not prevent disability....there's no science behind that marketing claim.
The real biomarker is not white matter lesions, it's gray matter atrophy--that's the one thing tied to disability and MS progression.
Keep your gray matter healthy, your mitochondria healthy, keep moving--
(a caveat here--my husband continues to take copaxone, and hasn't had any problems with it. But it was his venoplasty and lifestyle change that reversed his gray matter atrophy on MRI.)
hope the Ebers video helps!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5073
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Sun Dec 22, 2013 3:40 pm

Thanks vesta. I do believe there is a connection there somewhere. There is a history of family neck/cervical issues including my brother where doctors believe it causes him light dizzy spells. My masseur always comments that he finds my cervical neck area tense. I also have a rectified "lordosis" and very light scoliosis that an osteopath I saw a few days ago pointed out initiates at the head as in a radiography my head is slightly twisted to one side.

I have an acupuncturist who I will consult about this. I'd definitely like to learn how to use the device on myself.
zjac020
Family Elder
 
Posts: 137
Joined: Tue Aug 20, 2013 11:50 am

Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Sun Dec 22, 2013 4:07 pm

Thanks Cheerleader. I do want to find out more about CCSVI and should be speaking to someone who has successfully had it done here in Spain. But it's a pity I can't even find a doctor will to "scan" those veins.

Can I ask when (how many relapses etc) and why your husband started taking copaxone?
zjac020
Family Elder
 
Posts: 137
Joined: Tue Aug 20, 2013 11:50 am

Re: Should I start MS medication? What would you do in my sh

Postby centenarian100 » Mon Dec 23, 2013 9:33 am

cheerleader wrote:Here's neurologist Dr. George Ebers discussing the MS meds in a recent presentation
https://www.youtube.com/watch?v=OqY-_K1fYJY#t=859

Please notice that Ebers shows that relapses have no bearing on time to reach SPMS or the 6,8 and 10 markers on EDSS.
And they do not prevent disability....there's no science behind that marketing claim.
The real biomarker is not white matter lesions, it's gray matter atrophy--that's the one thing tied to disability and MS progression.


That's a good video. Unfortunately, I think one thing that is indirectly preventing the development of drugs which are effective in progressive MS is the use of ABC drugs in progressive MS. If you're a pharmaceutical company, you don't see an unfilled niche. If you can convince doctors to prescribe inneffective drugs, why bother spending billions on R&D to make effective drugs?
centenarian100
Family Elder
 
Posts: 350
Joined: Mon Apr 15, 2013 9:51 am

Re: Should I start MS medication? What would you do in my sh

Postby centenarian100 » Mon Dec 23, 2013 9:42 am

Actually, I just watched the full video carefully, and at ~11:55, he presents data suggesting that early relapses in multiple sclerosis do have an effect in increasing disability and shortening the time to secondary progressive multiple sclerosis. He also states that early relapses increase the chances of being >/= EDSS 3 earlier in life which may make a big difference to a lot of people. His main point is that the relationship between early relapses and very long term outcome is very weak.
centenarian100
Family Elder
 
Posts: 350
Joined: Mon Apr 15, 2013 9:51 am

Re: Should I start MS medication? What would you do in my sh

Postby daverestonvirginia » Mon Dec 23, 2013 11:00 am

This is a easy call for me. I started Copaxone almost 9 years ago, my sister almost 12 years ago. yes we both have MS. I also am on the best bet diet and a bunch of vitamins, the main one being vitamin d. When I was dx with MS, I decided I was going to do everything I could meds, diet and vitamins as soon as possible. You see one of my Uncle's also had MS and I watched him die a terrible death. Being older than my sister and me he never had the chance to use Copaxone, or the internet to find out about diet and things like vitamin d. Good luck, Dave
User avatar
daverestonvirginia
Family Elder
 
Posts: 182
Joined: Mon Apr 09, 2007 2:00 pm
Location: Reston, Virginia

Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Mon Dec 23, 2013 12:04 pm

daverestonvirginia wrote:This is a easy call for me. I started Copaxone almost 9 years ago, my sister almost 12 years ago. yes we both have MS. I also am on the best bet diet and a bunch of vitamins, the main one being vitamin d. When I was dx with MS, I decided I was going to do everything I could meds, diet and vitamins as soon as possible. You see one of my Uncle's also had MS and I watched him die a terrible death. Being older than my sister and me he never had the chance to use Copaxone, or the internet to find out about diet and things like vitamin d. Good luck, Dave


I'm guessing you tolerate the injections we'll? How many relapses did you have before starting on copaxone? What about after starting?
zjac020
Family Elder
 
Posts: 137
Joined: Tue Aug 20, 2013 11:50 am

Re: Should I start MS medication? What would you do in my sh

Postby daverestonvirginia » Mon Dec 23, 2013 12:20 pm

Yes, I have not had any problems with the injections. I have never had a relapse. I was dx after my one and only MS event with a MRI. I do not have any side effects from the Copaxone. It may be the Copaxone, it may be the diet, it may be the vitamins I am not sure, but I am doing well.
User avatar
daverestonvirginia
Family Elder
 
Posts: 182
Joined: Mon Apr 09, 2007 2:00 pm
Location: Reston, Virginia

Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Mon Dec 23, 2013 1:18 pm

You were diagnosed with MS based on just one ms event and MRI lesions? In that case I'm guessing your CIS technically speaking? That is the same with me (for now...fingers crossed).

It's cases like yours that make me wonder whether I should start copaxone, but I've also read several cases where a lot of people feel worse on copaxone/interferon and even experience more relapses...
zjac020
Family Elder
 
Posts: 137
Joined: Tue Aug 20, 2013 11:50 am

Re: Should I start MS medication? What would you do in my sh

Postby DrGeoff » Mon Dec 23, 2013 2:32 pm

First off, don't expect Copaxone (or any of the other first-line drugs to slow disease progression. All they are supposed to do is to reduce (on average, please note) the strength and frequency of relapses. Now you can argue this both ways as to whether this is slowing the disease, or just minimizing the symptoms.
I was offered Copaxone three years ago, took six months to make up my mind, and had three relapses in that time. Since starting Copaxone I have only had two relapses.

I wish I had started those few months earlier.

No side effects, the skin-site reactions reduce and after a few months they don't even happen at all. You could be one of the people who does have reactions and side effects, and you will never know until you try.

Don't neglect the good diet, don't neglect Vit D3 (and some magnesium), do get your bloods checked regularly. I know at least one person who has had an effect similar to ODing on Vit D3 (10,000 iU daily was too much, but other people need more than that. "Your gas mileage may vary".

Geoff
DrGeoff
Family Elder
 
Posts: 112
Joined: Mon Aug 05, 2013 2:44 am

Re: Should I start MS medication? What would you do in my sh

Postby want2bike » Mon Dec 23, 2013 8:41 pm

Diet is the most important part of treatment for disease. There was a study done in England showing those who did the drugs did worse. Dr. Swank saw people doing the drugs and determine they did worse. Roger MacDougall and Dr. Wahls gave up the drugs for diet. Most of the studies done on the drugs were done by the drug companies. Do not see how anyone can believe anything the drug companies say. They are just trying to sell their drugs. If you want to see what people taking Copaxone have to say Check out the ask a patient web site. All drugs have side effect so why take the chance if you don't have to.

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

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

http://www.askapatient.com/viewrating.a ... e=COPAXONE
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 8:15 am

Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Tue Dec 24, 2013 12:14 am

want2bike wrote:Diet is the most important part of treatment for disease. There was a study done in England showing those who did the drugs did worse. Dr. Swank saw people doing the drugs and determine they did worse. Roger MacDougall and Dr. Wahls gave up the drugs for diet. Most of the studies done on the drugs were done by the drug companies. Do not see how anyone can believe anything the drug companies say. They are just trying to sell their drugs. If you want to see what people taking Copaxone have to say Check out the ask a patient web site. All drugs have side effect so why take the chance if you don't have to. e

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

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

http://www.askapatient.com/viewrating.a ... e=COPAXONE


This is the path I have been following up until now, and really do believe in it. I had some mayor changes to make, that I only saw in hindsight when this all started happening. I barely ate greens and had suspicions for years that I didnt tolerate wheat/milk well. I didnt sleep well (usually 5 hours and staying up late for silly reasons) and never exercised regularly. I have changed all of this and am doing my upmost to stick with it.

I am taking LDN and am considering a high dose Vitamin D protocol (I have believed firmly from the start Vit D is involved, and am seeing that despite big pharmas resistance some studies are starting to show its relevance. I also believe in what is being told in the blog mentioned in the post general-discussion-f1/topic23907.html). Similarly I have also worked for bigpharma so i know what goes on and what their true intentions are (there is a lot of money in lifetime treatments, and very little in cures).

However, I do believe that for some (as have mentioned here) the drugs do help. I have a feeling that this disease has so many facets/factors that one of them is controlled by the drugs in some cases, but for others that is not one of the key factors, and so the drugs simply dont help.

I guess I just cnat stop thinking that if my lesions did progress on MRI or I did have another relapse I would try Copaxone, and so then I start thinking "then why not start it now...".

Sorry for rambling, just trying to express my confused thoughts.
zjac020
Family Elder
 
Posts: 137
Joined: Tue Aug 20, 2013 11:50 am

Re: Should I start MS medication? What would you do in my sh

Postby NHE » Tue Dec 24, 2013 1:22 am

Zjac,
In case you missed it, I've linked to a post about my experience choosing a DMD.

avonex-f5/topic16456.html#p163704
User avatar
NHE
Volunteer Moderator
 
Posts: 3393
Joined: Sat Nov 20, 2004 3:00 pm

Next

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service