Exploring my options

[sundancer]

Background: I started with symptoms a little over a year ago. Exacerbated by heat, my left hand and left side of my body up to my bra-line went numb. Since my mother has MS and was diagnosed about 15 years ago, MS was really the first thing we checked for. I was diagnosed three months later after MRIs and a LP at the age of 23. I started Copaxone two months after being diagnosed (I was doing some traveling and didn't want to start while I wasn't at home.) I have been taking it every night (only missing three times - forgot once, lapse in mailing once, and fell asleep once while waiting for it to get to room temp) for the past seven months.

I was diagnosed even though I'd only had one exacerbation. This past July, after taking multiple vaccinations in preparation for a trip to Malawi (I'm mobile, the numbness going away with steroid treatment), numbness crept back in intermittently. It normally happens when I've walked for a while. I'm not worn out, but I'd get some tingling. I had another MRI and they found "new activity" in both my brain and spine. I'm to continue on Copaxone until I reach the 9 month mark and I'll have another MRI to see what's going on. That appointment is November 1st.

So here's my dilemma: I don't think Copaxone is doing its job. Sure, the live virus immunizations may have triggered something, but I'm wary of injecting myself every night for no reason. I've always distrusted too much medication, opting for things to run their course. I know MS is different from a cold or menstrual cramps, but I'm getting to the point where I don't want to take it anymore. I don't want to keep injecting this foreign substance into my body, especially it's not working.

The other CRAB drugs are not appealing to me. My mother was on Avonex for 10 years and she had her weekly "shot day" where she felt like absolute s#!+ for 24 hours. I refuse to go on Avonex and I'm hesitant about the others with their side effects.

I haven't seriously curbed my diet or exercise routine, partially because I still feel like I did before (other than my heat sensitivity and fatigue when I get too busy). I feel that if I make serious changes in my life (I'm thinking yoga and an appropriate MS diet) then I'd really like to stop taking medication. I'd also start a vitamin/supplement regimen. (I do already take Vitamin D.)

What are peoples' experience with natural treatments of MS? Suggestions? Resources?

Please don't dismiss my concerns because medications work for you. I plan on talking to my doctor in November, but I'm worried she may be unhappy with me going off medication. I feel like the majority of those I know with MS believe in medications, and I'm not sure it's for me. I'd like to find a treatment that I'm comfortable with and I'd really appreciate some guidance.

Thanks!

[Sequoia]

Welcome to MSWorld, sundancer!

We have a special forum here for diet & supplements as they relate to MS. You might want to look it over.

http://www.msworld.org/forum/forumdisplay.php?f=70

[Toomnyhats]

Why choose?

Use of DMDs & diet/supplements does not have to be mutually exclusive.

There are some here who use only DMDs, others who use only diet/supplements and then there are those - like me - who use both!

DMDs don't repair damage or cure, they only slow progression. Diet/supplements can do the same. IMHO the combination gives me the best fighting chance of making my MonSter the slowest it can possibly be!

Something important to remember about side effects of any DMD: they are only a POSSIBILITY, no where is it written in stone that you will get them! If that is the only thing standing between you & a DMD, don't let it stop you from trying.

[momof8]

I haven't seriously curbed my diet or exercise routine, partially because I still feel like I did before (other than my heat sensitivity and fatigue when I get too busy). I feel that if I make serious changes in my life (I'm thinking yoga and an appropriate MS diet) then I'd really like to stop taking medication. I'd also start a vitamin/supplement regimen. (I do already take Vitamin D.)

What are peoples' experience with natural treatments of MS? Suggestions? Resources?

Please don't dismiss my concerns because medications work for you. I plan on talking to my doctor in November, but I'm worried she may be unhappy with me going off medication. I feel like the majority of those I know with MS believe in medications, and I'm not sure it's for me. I'd like to find a treatment that I'm comfortable with and I'd really appreciate some guidance.

Thanks!

I am recently diagnosed and after doing quite a bit of research on the different drug treatment therapies and the diet/exercise route, I am leaning toward not treating with a DMD.

I don't have any answers for you, except to say that there are others thinking the same thing and if it makes you feel any better, I have found this road to be largely unpaved. There is a lot of internet info out there, but much less in the way of "official" or "scientific" information (like support/info coming from a doc) out there when it comes to just using diet/exercise to manage MS.

Also, my doc is pretty unsupportive of not doing the DMD's. I know there are docs out there who won't treat you if you choose not to take the DMD's.

Not sure where you are, but being in the PacNW with Virginia Mason Seattle in my "backyard", so to speak, I just found out that they have an MS clinic with a naturopath as part of their MS team. So I am pursuing a referral there to see what I can find out. If you are near any type of large city, I would definitely look at some of the larger medical centers or teaching hospitals to see if they have something similar.

[sundancer]

I live in the Shenandoah Valley of Virginia. My neuro practices at the University of Virginia, which is about an hour away from where I live. I am starting the Swank diet, about a week in so far. It's a little frustrating, but I'm encouraged with looking up Vegan recipes for baking. Baking is one of the great joys in my life and I'd hate to bake and not be able to eat some myself. But it's actually opening up a brand new world.

The idea of not taking any medication isn't just based on side effects. I'm not quite comfortable with my body running on medication. I'd rather it run on natural substances. This is why I'm cutting out processed foods with my new diet. I'm also checking into which vitamins to take on a regular basis. It would bring a lot of peace of mind for me.

[Tracy42]

My experience

Hello Sundancer,

I wrestled through the same issues and thought I would share my experience.

I was misdiagnosed 10 years ago and admitted to the hospital as having a stroke (they were suspect of MS). I went on blood thinners, no CRAB drugs since I was misdiagnosed. I went 5 years before having another exacerbation and my diagnosis was changed to MS.

I was started on Rebif, and then switched to Copaxone. Like you, I was not comfortable putting chemicals in my body, but I did and started doing research. I sought out and fully committed to every alternative therapy I could find. Each alternative therapist said I could be “cured”. I did acupuncture, went to an author who cured herself and did her protocol, did all combining therapy including colonics, some type of brain wave work, massage and on and on and on.
I then went further and was directed to a Nutrition expert who had a 100% cure rate. We even had documentary film interest following my daily healing journey. I went off ALL medications including Copaxone. I went through a rough detox period and then felt amazing. BUT after 2 months, I was hit hard and ended up in the hospital. My guru disappeared. I started on the Copaxone again.
My family then heard of another healer who could cure me… His criteria for helping me was I must go off all medications (again). I was hesitant, but after he talked with my family I decided to dive in again. I had exactly the same experience…did great, then another relapse. My doctor said I was doing better than he thought for being non-compliant.

This was a very brief outline of an expensive journey (my entire savings), but one I needed to take. The ups and downs of having complete and total faith in God and each therapy believing I could be healed only to have rough relapses was devastating. It is tricky with relapsing and remitting MS because the alternative therapists wanted to think my remitting period was due to the therapy and “I” must have done something wrong to have relapsed.
In summary, I did learn an immense amount, but it was hard schooling.

I radically changed EVERYTHING in my life, and the journey continues. I continue to practice all I learned but will not go off the Copaxone again. With my complete lifestyle changes I hope my healthy habits counteract the chemicals I inject each night.
I do take a vitamin regimen, eat organic, exercise (yoga), pray…and go day by day.

Hope this helps you some on your journey…
~Tracy

I'm pretty much a newbie, so the only advice I have is do what you feel in your heart is best for you. I'm on Rebif and have been for three months, but I'm still skeptical about the dmd's. I'm in wait and see mode, but I have not ruled out the possibility of going CRAB free at some point.

Good luck in whatever you decide.

[SNOOPY]

It is important to understand there is no cure for MS.

The DMDs are to hopefully slow progression, hopefully decrease the severity of relapses and hopefully decrease lesion load.

There is no guarantee even if you take the DMDs. Some still progress and feel worse on the DMDs and some seem to do quite well on the DMDs. Even on DMDs relapses, symptoms and lesions can still happen.

Many use Complementary, Alternative Medicine (CAM) in conjuction with DMDs or instead of DMDs. I have never used a DMD nor do I have any intention of starting one of them.

Each person has to do what they feel is best for them.

[0485c10]

I don't know of anything that treats MS other than the Crab & newer FDA approvced meds.

snoopy has a good situation with her neuro that he is willing to treat her even if his recommendation is a med, and she chooses not to use a med, that is her decision and he continues to treat her....that i hope you will have with your neuro, if you chose to go against her advice.

I think its great that your plans are to be upfront & truthful with the neuro..there is a member here Redwing, that cautioned someone who felt her doc was putting too much pressure on her to start a med, that she put her decision in writing because a doc has a legal obligation to go to all efforts to get a patient to use the best treatment the doc believes is necessary for the condition...and a doc may have to prove they went to great efforts maybe before an ethics committee or a court of law.. by writing a letter of her decision she releases him from legal obligation. you might want to do similar? so the doc can continue to treat you after you inform her of your decision against a traditional med.


a while ago, there was a study that showed there was not that great of a benefit from the meds for what they cost..here is a link to that thread that has links to those articles...something for you to discuss with the doc if you decide against her advice.

http://www.msworld.org/forum/showthread.php?t=113074


and first get the mri, find out what it has shown, listen to what she advices before you make your decision.

[mjan]

First of all I am sorry for all you are strugging with..yet I admire your attempts to find YOUR answer, in YOUR time for YOUR health.

I probably have had MS for 20-30 years but it was missed. I also have several other diagnoses and terrible reactions to meds or interactins issues.

Went from being diagnosed with a "MILD" case to unDX to diagnosed again just last year. All those years I was raising 3 kids alone, in a very stressful time, going to school and working. I have no idea how I made it through.

Now that I am finally DX I chose NOT to do DMDs. I had relief too by a wholistic, amazing specialized nutritionist that helped with inflammation and getting my broken body in shape enough to improve a whole lot. My neuros were amazed at how he helped me as well...often recommended I see him again.

Personally do not trust Big Pharma and their claims. Heard of an independent study (separte from the pharmaceutical studies) that said, in 20 years you end up with about the same EDS (disability) scores if you had DMDs or not. I believe that.. FOR ME. Now If my kids were younger and I was dx THEN, I do not know if I would make the same decision NOT to do DMDs.

But trust yourself..and you can always change your mind

Its YOUR body..your life.

Hugs and good luck, Jan
P.S. I also think my mother had MS and that got missed along with other things wrong with her.

[0485c10]

Hygiene Hypothesis "Worm" Theory

Since you are exploring all options--there is the hygiene theory, now in clinical trial with the support of the MS society, that speculates the rise in incidents of MS in the first world countries is because we have gotten too "clean"

and our immune system has not learned to tolerate substances without over reacting causing an auto immune
response, a mis directed immune system....

the theory carries some weight because while MS is increasing in 1st world countries, it not increasing in 3rd world countries that have fewer hygienic systems( lack of hygienic systems kills more--so they are not optional)

the Helminth-induced Immunomodulation "worm" hygeine hypotheses is in trial to induce immune tolerance in people with autoimmune diseases..not only MS but others too...

here are some links to read on it, and a link to the government trial on it...AGAIN SOMETHING TO DISCUSS WITH YOUR NEURO IF YOU DECIDE AGAINST CONVENTIONAL MEDS.

http://en.wikipedia.org/wiki/Helminthic_therapy

http://www.helminthictherapy.com/

http://autoimmunetherapies.com/candi...c_therapy.html

http://www.uwhealth.org/neurology/mu...rosis-ms/13248

http://clinicaltrials.gov/ct2/show/NCT00645749

[KyleW]

I went off ALL medications including Copaxone. I went through a rough detox period and then felt amazing. BUT after 2 months, I was hit hard and ended up in the hospital. My guru disappeared. I started on the Copaxone again.

This is the same story as a friend of my sister's. She was doing well on DMD's and then found an MS Whisperer. She ended up in the hospital for weeks and nearly died. She survived, but is functioning at about 50% of where she was prior to going off her meds.

[oso49]

Sundancer...

I don't want to discourage you from the DMDs..but I have decided to hold off taking anything until I feel it's absolutely necessary.

Below is an excerpt from results of a study posted to the WebMD site concerning the "cost" of DMDs and the value to the individual taking them. I'm not a real fan of WebMD, but.......

Something to think about.

http://www.webmd.com/multiple-sclero...ss-of-ms-drugs

A quality-adjusted life year is a measure that tries to account for both the length of time a person could expect a treatment to extend life and how good he or she feels during that time.

For example, the study found that on average, patients taking Copaxone for 10 years could expect the drug to add less than one quality-adjusted month to their lives compared to patients who were only getting supportive therapy to control symptoms.

Patients taking Avonex, Betaseron, and Rebif gained about two quality-adjusted months compared to those getting supportive care.

Hang in there and let us know what's up...
__________________

[KyleW]

This was also taken from the WebMD article.

"So here is a trade-off between national policy or population-based policy and individual patients."

The study looked at averages. I'd rather take my chances that I'm the one dragging those averages higher Policy is based on averages and individual patients make choices.

[Spydre]

I would say give the Copaxone some time. With me, ALL of my MRI's showed increased lesion load while I was on Copaxone, but I went the longest period I've ever gone without a flare. Prior to Copaxone it was every six months. Once I started the Copaxone, it was 16 months. I figure if I still had increased lesion load, that without the Copaxone it would have been worse. Granted, there were times when I had to psych myself up to give myself that injection, but it helped. Yes, eventually I did start having more relapses, and was eventually changed to Tysabri. But many people here have had success with Copaxone longer than I have.