I am P***ED!
 

I guess I'm going to Die with MS. Big Pharma have no intention of showing us a cure until they've bled us dry of all our wordly goods, first.:rolleyes: That probably means, we will all die with MS.:mad:

Not that MS will cause our death, just that it will be our companion in death, just as is is in life.:rolleyes::mad:

Where do we protest this unfairness? To whom do we complain? From where will we get truthful answers? Aren't you a little P***ED?

It's probably not in Big Pharma's "best interest financially" to offer us something that would either cure it or otherwise keep us from having to depend on some sort of med. It's all about the big bucks. :mad: Makes me mad, too.

Yes, but I want answers, Kell. I want someone to have the guts to come forward and tell me that I am wrong or right, in my assumption and what they intend to do about it.:mad:

The only way that big pharms is going to come up with something that really works is to stop taking the meds that aren't working.

Well, I've done my part..........:rolleyes:. None of the meds they've offered so far have done me any good.

I've stopped taking anything for my MS. Including the baclofen. I'm now using exercise, physical therapy, and beating up the Mii characters in my Wii, as a way to deal with spasticity. (I really enjoy beating on the Mii characters in the sword fighting game)

Now the only medications that I take are the occasional migraine pill and some Tylenol or ibuprofen.

I'm still wobbly walking a bit, but not as bad as I had been. I had a really good day friday. Went to PT, and when I walked in, I was carrying my cane, twirling it like a baton, and did great on most of my exercises. Today I'll be dragging myself in there, but at least friday I was able to walk nearly normally.

My neuro kind of ruined any faith I had in any of the MS meds when he told me once that he didnt think any of the injectibles worked. That was just before I quit stabbing myself with the C. (I pretty much quit it that night) At least he told me the truth about his personal opinion of the stabby drugs. (he's a very old neuro and is a bit old school. Doesnt order MRI's every time there's a change. He can figure out where my problems are coming from by my telling him what's not working right)

I try (not usually successfully) to avoid being angry. Some people can channel anger well, God bless 'em. My daughter, for example, can get her dander up and use it constructively. She becomes more articulate, more determined, more energized.

Me, not so much. If I let myself get really p.o.'d, it tends to spiral out of control, and I just end up with a stomachache and humongous anxiety. I totally agree with you, though.

I want to buy a paintball gun and go find every politician and corporate head that is making our lives miserable and get their suits ruiined with bright pink paint...or maybe I should use orange in honor of MS;)

They don't make enough paintballs in the world however:rolleyes:

Where would we picket big pharma? At their labs or at the pharmacy? The FDA?

Or maybe we could do a 200,000 Person MS march on Washington!!:eek:

If you did the march on Washington, I would march with you as long as I could.

I couldn't agree more!

I hate the shots, I don't feel they're working, I feel they're doing more damage than help. I hate the other drugs on the market that cause manic moods, depression, weight gain, thrush, and many other problems.

I hate that they charge so much for the medication when we don't know if it's going to work.

I hate that when money is donated to find a cure for MS, the money is used for paying employee's, for their luncheons and for more info on the drugs instead of RESEARCHING THE DISEASE AND UNDERSTANDING IT FIRST.

Why are we looking for a cure before we even really know what MS is?

Don't get me wrong, I want a cure for this lifelong disease, I really do, but I would much rather have a better understanding of what the disease is in itself before we get a cure.

I hate MS and what it's done to my body.
And I hate the pharmaceutical drugs for what they have done to my body.

It's genuinely a catch 22, and that's lame.

BOOOOO!!!!! to MS :mad:

I agree 100% with everything you just said! I no longer get excited when a new article or publication talks about "new research" because it seems to all be researching stuff that's been researched a hundred times before. Or they make a huge "announcement" that it's been determined that people with MS have pain. :rolleyes: :rolleyes: DUH! Tell me something I don't know. :mad:

I don't feel there will be a "cure" in our lifetime! Look at the $ that the big ppl would lose. How many years have "they" been working on a cure for cancer? Nah, I don't take their 33% chance of helping meds. I'll be with ya in Washington Sal!

You know what I hate most of all?

That the neuros, pharmas, etc. don't take what we bring to the table seriously...we have a base of knowledge too...don't talk down to us, don't tell us we don't know what we're talking about. We are some very sharp tools in the shed, you know...so don't dismiss our input.:mad::mad:

Now ladies, how can we be so greedy in wanting a cure for us and
others.
We would be taking away the life style of all the big corps., pharms.
and anyone else that might be involved to help us to have a normal life.

We would be taking away theirlarge mansions, luxury cars,boats,
world trips,personal service and whatever comes in that world. Now why
should they worry about us poor people that are suffering with this disease
and the many more diseases that people are suffering and dying from.

The money that is made from all kinds of fund raises all go into their
pockets not much into research.

This is what I believe and feel.

Jappy:(

MS was the only thing I got, that I wanted to give back so badly. All of it for 30 long years.

Why, because after 150 years they still treat people with all the wrong drugs. They rather give us toxins and get rid of us, imo. They all should stick a needle up....

Even the common cold, cancer, AD, ALS, PD, MD, CF, and tons more, where are all the medical geniuses? We live in a futuristic world, we've been to space and back, but still the big drug guys want all our money for their own pockets.

Just look at any drug store shelf. With the OTC drugs, and the prescription ones, what a fortune is made every nano second.

I can agree some drugs are life saving for some ailments, but so many diseases are out there. (sigh)

Sally, good thread to vent. Thanks! :grouphug:

We all seem to have computer access. On line getting e-mail addresses of goverment reps, etc. is fairly easy. I have sent e-mails to each. Found sending to president generates a general form reply, but sent anyway.


A new anti-miscarriage drug (a progesterone) that has gone from $10 to $1500!!!! by new Pharma Co. owner (no, they did not do research and don't need to cover cost - Makera (?) from Thera-RX). Ten doses are usually needed and is beyond reach of most without insurance. Their babies seem doomed to die. I asked in my e-mail if their own mothers knew what they were doing to others. I generated a form letter reply. My next e-mail expressed the old Wendy/old lady line "I don't think there's anyone back there". Of course I got no reply but if I made one person think for one moment maybe that's as good as it gets. It did help amuse me for the day Maybe one day you'll see me on TV chaining my wheelchair to White House fence.

Sally, I've been to FDA (pre-MS) when I worked for Medical Export/Import. Not impressed, suggest going to Capitol or White House.

This new pill Gilena is $48,000 Per Year! its a pill that costs very little to make, but they are charging the "reasearch value" of this med. its insane! Now we are told to eat aprin everyday instead of green leafy vegetable. statins instead of oatmeal and fish, and boniva instead of calcium rich foods. I say we take our pharmacutical needs to the garden, instead of the drug store.

When I was "misdiagnosed" with SPMS and taking Avonex for over 2 years, my research led me to believe they (pharma and neuros) really didn't know if it would do any good.

I quit taking it saving me ruining my weekends with the flu symptoms side effects, not to mention having an intramuscular shot on Friday nights. Besides, they were charging my insurance company $3,500 a month for the med. A med nobody knew or knows would or is going to work. You tell me any one has patients in mind for any cure anytime soon?

Why do you think the drug companies are desperately trying to shove CCSVI under the rug?

They are scared silly that this may be the answer that puts them out of business!

I firmly believe from all of my research dealing with MS and my current diagnoses the answer is with allowing full scale stem cell research and immediate application. I would be the first in line simply based upon what I've read already.

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. :eek:

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. :cool:

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. :cool: 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.

Let's face it, Big Pharma has a lot of our Docs fooled too. They mean well, but, what ever happened to "first do no harm"?

It's especially nifty for the drug companies that whenever a patient complains that the DMD wasn't doing any good, they can say, "Ah, but you have no idea how much worse your MS would be if you hadn't been taking that DMD!":confused:

I've told my neuro that I'll be willing to go back on Copaxone if the MRI next December shows that the MS has worsened considerably since going off it (May 2010).

But when I said that I'd forgotten about the left groin pain attacks I used to have while on Copaxone. They were really crippling. I'm very glad to be rid of them.

Not to mention the bowel urgency problem, which was getting severe. Or the permanent lipoatrophy dents.

Amen to that! I told my MD the ONLY reason I was agreeing to this latest MRI was to show him that the Copaxone did NOTHING! for me other than drain my wallet. If the MRI shows no changes, no new lesions and so forth, it will be a long time before he can get me back in the machine, let alone get me on another DMD. I was just so sick, and they kept singing the same song. "just think how much worse you would feel without it!" and "you never know if THIS relapse that we just prevented, was the one that would finally take your eye sight." Scare tactics!

Thanks for the rant space. :cool:

Let's just say that I'm not unconvinced that the trials and and effecacy findings of the ABCRS were skewed and twisted to show possitive results, when there were none.

MS remits, remisses, progresses and doesn't progress on it's own and everyone is different. Some peeps progress fast, some slow, some get lesions, some don't, at speeds personal to each or at least to each group.

It would be easy to say that the old DMD worked for some and not others...KWIM? It musta been the kickapoo juice..:rolleyes::D:p Bahhh!

Ask yourself this question before taking meds like Tysabri, Gilenya and some Chemo drugs....Is the taking of a, possibly, life threatening drug worth the risk to, possibly, "treat" a disease that isn't??

I know that I feel better on Copaxone but when I tried the other meds they made me feel worse. If they all did that I would NOT be taking them. I feel better on Copaxone and my MRI's and exams prove that I'm better too. Sometimes diet and exercise is better than meds. :grouphug:

That is so true, Wiz and that's why I didn't include the ABCRs in my question. I took Avonex for 7 months and believe it helped me but, couldn't live with the horrible sides.:eek: I then took Copaxone for almost a year, but it did nothing for me and I progressed from RR TO SPMS.

None of the MS meds are cures so, for me, life and the quality of life is just more important. I have to say, I believe LDN helps me with that.:)

So, if the MS med you are taking is helping and the sides are not bothering you, killing you or interupting your life, then, I say go for it and woohoo for you..:grouphug:

Really and truly, the angioplasty was nothing. My c-section was a dozen times worse. BTW, I *used* to have that same pressure feeling in my head. I don't anymore! I'm 10 months out now from my procedure and still feeling much, much, much better than I was before it.

Started taking LDN a month or two ago and now feel even better.

I did Copaxone and felt that it was doing absolutely nothing for me. I stopped taking it a month after my angio.

I am convinced beyond a doubt that my improvements from the CCSVI treatment are NOT a placebo. The improvements have been too dramatic and long lasting to be placebo.

That and the fact that personally know others who have had the same experience.

Hi Sally
 

Sorry you have ms. My cousin does too. I think the drug companies could do alot more. Too much money is wasted. I was bled dry financially also. I believe science has the tools to do alot more than they do. I know there are studies out there for ms. Do you want to enter a trial of some kind? I just hope you will get some kind of better help soon. ginnie