ya know?!

I will say, when I first read into what CCSVI was, my heart dropped. and this is why.

After I was diagnosed, I was scooping out the litter box. I was not crouched down because that causes my legs to instantly go numb, so I was bent over. Within seconds of being bent over, the pressure started building in my head. It got so bad within a few seconds that I literally thought if I did not stand upright immediately my head was going to explode. Didn't think too much of it until about 3 weeks later I read on here what CCSVI was. and THAT is why my heart dropped. I honestly feel that my jugular is narrowed and that is why that pressure was building, because I was almost upside down and my blood in my brain had no where to go, it was just building up in my head. That makes sense to me. But I am too afraid of the balloon procedure to have it done

Also, why do our doctors and big people shrug us off like we don't know what we're saying? We are the ones experiencing it! We know what neuropathy feels like, they (the healthy people) don't and have a very hard time understanding what it is. So why not listen to what we say? It's just not fair.

ALL of my MDs tell me CCSVI is in no way the cause of MS sx, but then I see so many videos of folks who almost jump off the recovery room stretcher to sprint to the parking lot. I want to see more videos of them 3 months out and 6 months out and 12 months out. I have seen several that have had it done 2 or 3 times and keep having to have those veins reopened. Its so scary! I want so badly for this to be a real answer, but I too am chicken and want better answers. I want to see more research being done, and not just searching thru youtube videos to find info.

MS has been a big money maker and there is no profit in a cure, but I simply cant imagine that if a cure existed that they would hide it. That the humanitarian side of those folks in R&D wouldnt win out and find a way to get that study published.

I hate this stupid disease.

I'm not so sure those in power might be a little evil (nice never makes money it seems) and only whistle blowing employree might leak the news.

Big Pharma won't hide it, because they are not looking for it, or researching for it, "The Cure."

All their research is going into treatment only drugs. Which people take, and then are afraid to stop taking them. They suffer the side effects yet aren't really sure the drugs are working, or if it is the nature of their MS to run this course.

Psychological blackmail. "Are you darned if you do, and darned if you don't?" Then you better take some more meds to help with the side effects of the drug you are taking, then another side effect, and another drug, until you are taking an arsenal.

I have been there for most of my 30 years of MS. Avonex, Copaxone, drugs to help with these side effects. Add Neurontin by the bucket load, Zanaflex, anti-tremor meds, Provigil, Amadadine, Mysoline (sp?), and tons more. I have all the receipts.

My Liver and skin-sites hated these drugs. I was more cog-fogged, or in a drug hangover all day too. I just gave up and weaned off everything. Nothing happened. Hmm

I waited a few years and then went on LDN. It was my choice, mine. I still can't spell, or type well, for crapola, but I was never good at those, so I don't think I will win any spelling bee's in the future either. Lol

I was given many scare tactics to stay on Copaxone even tho I felt horrible, dented and had attacks of pancreatitis. They kept telling DH that if I quit taking the meds within six months I would be in a WC. well, its been 9 months and I am not in a chair. I felt simply horrible on the stuff. I couldnt think, function and I was losing the ability to participate in my own life. They didnt seem to care about that, they cared that I "stay on program" and I got lectures about how I was "preventing damage" Well...kiss my grits! I reached a point of ENOUGH! I kicked many out of my boat, and DH was freaked out, but I told him that he too could swim for the shoreline if he didnt like it. I feel TONS better since stopping. TONS! Big Pharma has very little hold on me now.

You know, You all talking about how much you hate your DMD, honestly, makes me feel slightly better about my harsh, negative feelings towards my DMD.

What I am saying here..
Is that I literally have to do hours of talking myself into taking Rebif (It usually comes down to my boyfriend harassing me about it so badly that I go crazy and take the darn thing), I hate it with a passion, and feel so guilty for hating it because years ago there was no 'DMD' and I am ever so fortunate to have been diagnosed in the time era of us having this drug.

But here's the thing..
I honestly don't believe it's working.. I have been on Rebif for over 2 years now, and have had MULTIPLE flares each year.
PLUS it really bothers me that I am stabbing myself and injecting a horrificly painful drug 3x a week, that's damaging my skin, and organs, and it's so new still that they have no clue what it is going to do to the human body after 15-20 years of it being inside of that human body. its scary.

Like I said I am thankful they have these dmd's, but I am just not seeing good results, so it really makes it very hard for me to stick with the drug. I have talked with my neuro about it multiple times and he freaks when I say I am considering dropping off the DMD and seeing what the au naturel route does for me. And I still to this day experience side effects for my Rebif, shouldn't my body be used to this drug by now!?!

I felt sort of guilty when I first started "bad mouthing" the DMD's I took but not anymore. They were not helping me and the medical community couldn't even give me an answer if they would ever help me! It was a total crap shoot and they knew it! But they didn't have anything else to offer me (medicine wise) so they kept trying to scare me into using it.

Once I took charge of my own body and what I do (or don't) put into it I felt so much better. Physically and mentally.

I don't care how nice my Neuro is......or how many patients he has.......I am the only me that he's treating and I have to be my own advocate. In my situation I am the only person I have to speak up for myself and decide what I feel is best for me. I'm not trying to be selfish or self-centered but my own health is what I'm focusing on when I speak with my Neuro. Not his paycheck or the success (or not) of the pharmaceutical industry. Lots of folks feel like they must do something....anything....to try and stop the progression of the disease. And while that is true....it doesn't have to be something that will produce it's own set of problems in the long run (like side effects from meds). It can be as simple as treating your body well and feeding it what it needs vs what it wants.

Everyone is different and will respond differently to various kinds of treatment. For me....I have found that less is more. Less meds and more holistic treatment. Better food and more vitamins/nutrients. Less processed things and less meds. It's working for me so I'm sticking with it. If my Neuro doesn't like it he can tell me to take a hike. I'll find another doctor. I'm in a partnership with my health care provider and he works for me.....not the other way around.

Beautifully stated Kitty!

What you are saying, confirms what I have been thinking about instead of the dmd.

What I was thinking was throwing out the DMD, getting on a good diet full of antioxidants and anti-inflammatory foods. Filling up with the right vitamins/nutrients. Maybe eating right would slow some progression of the disease.

The way I see it.. is.. MS literally has a mind of it's own. If this disease really wants to attack me (which it apparently likes to do so every 2 months or so), it's going to do so regardless of DMD's.

So why constantly keep putting a drug in my body that the disease is not afraid of. Maybe natural products like healthy food and herbal remedies will make my MS comfortable with being lazy and NOT attacking me all the time.

So with knowing that you have done well with a proper diet and no DMD, I will stick to Rebif until I have my next appointment with my neuro, but I will discuss with him (again) how I am not okay with drugs that don't work and I want to try my OWN way of medicating withOUT harmful drugs.

And you are so right, WE are the bodies, it's OUR health, we should be able to approach our disease the way WE want to and a way that makes US comfortable. After all, we are the ones that live inside our bodies EVERYDAY, unlike them....

I do take LDN and have for several years now......without my Neuro's blessing I might add. But, I've been healthier than I was while on a DMD. And I don't have to contend with all the side effects. Lot's of folks here have been "DMD-Free" for years. Even if I didn't have MS I believe I would still take LDN for all the other benefits it offers. Even the pharmacist where I get my LDN filled takes it and he doesn't have MS. Plus, it costs me out-of-pocket less than $200 per year while the DMD can get into the tens of thousands of dollars.

I simply couldnt take it anymore. I felt horrible! I couldnt think, my skin was in horrific condition, and the dents were getting larger by the day. I have constant attacks of pancreatitis, and gastro paresis, and so many other issues. I couldnt think, I was so exhausted I couldnt get out of bed most days and if I did I was back in it by noon. PJs were my uniform. I begged for more than a year to be released, and got stories about how risky my behavior was, and scare tactics to my DH who really isnt educated on this...I feel soooooo much better since laying down my needles. Ask ViseeYou. She saw the dramatic transformation.

If you feel your DMD is working for you, then keep taking it. The side effects are worth it. No one else can tell you what this will or wont do for YOUR MS. they say MS is like a finger print. no two of us have the same one. For me I am so relieved to have some of my life back! I can walk down the street without being winded and suffering chest pains. SCary how far gone I was.

Did my MD keep me on it to make money? I would be quite angry if I thought that was true. I think he seriously kept me on it because its the ONLY tool he has to offer me. Past that, im flying blind, and riding bareback and the only thing he can do is treat my sx. I think he wants to offer me better things, but thus far, none have arrived.