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    Old 07-16-2014, 06:51 PM   #1
    carbo29
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    Seriously, what's the point?

    If all the testing the doctor is requiring does nothing why do it? The results will not change anything. It's not like by knowing that there is a change it will affect the outcome. The dmd's have a 30% help rate. I do not say success because there can not be a success if it can't fix things, dmd's can cause cancer, liver damage and a few other nice things. There are no long term studies to prove anything. All the posted results from any trials are useless because the study time is short enough that the test subjects could just as easily gone two years without experiencing any major changes. Everytime I ask no one can give me a straight answer as to what these drugs are doing. They are not cures. They are cocktails of crap we are blindly putting in our bodies because we are told to do so. They don't stop ANYTHING.
    Doctors are in it for the kick backs. We are simply guinea pigs. We have no control over the course, so again I say, what's the point? To shell out thousands of dollars so you can tell me the results to nothing you can fix? No thanks. I'm good.

     
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    Old 07-16-2014, 07:18 PM   #2
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    Re: Seriously, what's the point?

    carbo29,

    There is no cure for MS, but those who choose to use a DMD and stick with it are often those who get a benefit from them. Others who are progressive have zero DMD use. The testing the doctors do is to get a diagnosis. There are over 400 MS mimicries and many of them are completely reversible with treatment. 15% of those presenting with MS like symptoms are in fact Vitamin D deficient. This is an early test and intervention is successful. Lyme disease, another mimicry, requires early intervention to be the most successful.

    MS is also not an exclusive disease and will often be accompanied by another disease.

    The cure? it remains elusive. The long term side effects have to be considered and weighed by each MSer. The DMDs are also accompanied with symptom relievers. On the positive side, the symptom relievers have fewer problems, but due to the elusive nature of MS, the success rate remains low.

    My own remedies which I have shared with others has helped some, but has done nothing for others. My MS Specialist has shared my remedies with other progressive MSers who have nothing available. Thankfully, some at the clinic now have success too.

    Sharing our experiences, our triggers, our remedies is the best thing we can do, I think. Until there is a cure, we just have to keep on keeping on.
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    Old 07-21-2014, 05:47 AM   #3
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    Re: Seriously, what's the point?

    We have no control over the course, so again I say, what's the point? To shell out thousands of dollars so you can tell me the results to nothing you can fix? No thanks. I'm good.

    I couldn't agree with you more. I haven't had an MRI for 9 years (11 years since official diagnosis) because it didn't make any sense to me to allow them to expose my body to radiation when the results of those tests will do nothing for me expect to reconfirm what I already know. If it showed more lesions..was I going to change what I was doing..NO, given there is nothing to stop it so why know? You are also right in the fact that DMD's do not stop MS. I have read a great deal over the years and they all still tell me the same thing...they can help slow progression but only truly effective for the first 3 years. I remember the specialist in Chicago telling me this and was very clear to tell me that everyone's MS journey is completely individual and whether it will progress or not is not within our power to change.

    With that said, everyone has to do what their body responds to via diet, exercise and what supplements we use or don't use. If everyone responds differently to everything then it's a crap shoot until you find what works for you. Jayhawk has shared great things based on his years of experience with MS that have helped me and a few others I have shared them with.

    Doctors can do nothing for MS except prescribe drugs to help people cope but often times..the side effects of those drugs just set people up for more problems. The doctors can not stop the progression and they can in no way know what your own personal journey will be. I remember the doctor handing me brochures that told me how to pick out a wheel chair and the right exercises to do in bed 11 years ago...I just laughed and said "you don't know me very well do you?!" Eleven years later..I'm a still standing!

    Why give the doctors and hospitals so much money when they can do absolutely nothing to stop what is going to happen? Your money is better spent on figuring out the best nutrition, exercise and spiritual/emotional support that works for YOU. IMO

    Wishing you peace and hoping you have some real support in your life. This board is a great place to find those who understand. Take good care!
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    Old 07-21-2014, 10:09 AM   #4
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    Re: Seriously, what's the point?

    Thank you prayer warrior. I am relatively young and only recently diagnosed (4 years ago). But I have been to several neurologists all of whom have different opinions as to whether or not this is what I have. I can't say I've had very good experiences with doctors and I feel like it is just pushing me further away from taking a medicinal route. I go back and forth through phases where I want to do whatever it takes but then I think "whatever it takes to what?"
    I had a horrible experience with copaxone and no desire to research the other options. I feel like I have not been able to find a doctor who agrees with my decision to hold off on putting chemicals in my body.
    I don't feel like I'm being stubborn, I feel like I am educating myself on what all of this really means. And I am yet to find anyone who has been able to give me any helpful information on what is really going on with these drugs
    Even more frustrating is all of these doctors telling me to educate myself but then getting agitated with me when I ask questions. It's like I can't win.

     
    Old 07-21-2014, 12:25 PM   #5
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    Re: Seriously, what's the point?

    My experience has taught me that one must educate one's self through reading fair and legitimate sources, personal trial and error and standing by ones own beliefs. My neuro was so very angry with me when after a few months of Rebif, I refused to use it any more. I knew with each shot it was the wrong thing to do. He was physically red faced and frustrated with me. My body...my decision. He disagreed strongly.

    I congratulate you on standing by what you believe is best for your body and your life. As stated by others, MS can look like other conditions so it is important to have everything else ruled out as best you can. Until then, taking a medication for something that they still don't know is definitively MS doesn't make much sense to me. Keep looking for an MS specialist if you can find one in your area. If not...a neurologist can be of help but keep looking for one who will listen and respects your choices.
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    Old 07-21-2014, 02:44 PM   #6
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    Re: Seriously, what's the point?

    1/3rd less relapses is a good thing and worth every penny IMHO.

    I agree with you about the doctors visits. I had an appointment with my Neurologist tomorrow and cancelled the appointment last week for many of the reasons you give.

    MRIs are magnetic and do not give off radiation. A MRI machine uses strong magnets instead of radiation to make the images. But I tend to agree that their usefulness is limited.

    Copaxone has been studied over the long term and seems to have better long term results for those that use it for 10+ years. Although many do well without any medication anyway. My brother was diagnosed about 14 years ago and has never taken any DMDs, and is doing fantastic.

     
    Old 07-22-2014, 04:14 AM   #7
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    Re: Seriously, what's the point?

    Agreed..I misspoke. MRI's do not give off what everyone thinks of as "radiation" however for some like myself...the "radio waves" they do give off gave me severe headaches and nausea. Could have been the stress of it all but each time, same result. I was told that it was due to a high sensitivity to it thus wasn't worth putting my body through that given the results made no difference in my treatment plan.
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    Old 07-24-2014, 03:08 AM   #8
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    Re: Seriously, what's the point?

    Just to offer some more food for thought. SOME of the DMDs, like Interferon and even Copaxone, have been on the market for over ten years now and the studies are much longer than what was quoted. Some of them, are newer, and I would agree, there is no long term data.

    As far as the comment that DMDs only help for the first 3 years. "I have read a great deal over the years and they all still tell me the same thing...they can help slow progression but only truly effective for the first 3 years." There has never been a published review of this. And, having been dx for 10 years myself and originally put on Rebif for the first 5, I would argue that it kept me excaberation free for 99% of that time. The 1% was caused when my body developed antibodies to Interferon (Rebif) and started acting against me.

    From that point, I have been on almost every DMD on the market and have continuously taken low Dose Naltrexone ( a NON- FDA approved MS drug used in Europe and Australia as a DMD). Let me not forget to mention that I was diagnosed with over 50 lesions on my brain- not exactly a "small" case of MS to be diagnosed with.

    Over the years and over 8 DMDs, I have over 100 lesions on my brain. I have zero symptoms. I have never missed a day of work. I am 100% able-bodied.

    One could argue that obviously me being on something hasnt slowed down the disease- I gain lesions by the year. (I know this because I do have MRIs each year and I do so to see if the medication is working) BUT I would argue that if I have no symptoms and no dissability- the LDN or any of the other drugs Ive used are keeping me going from a physical standpoint. Which to me, is MUCH more important.

    Im also going to argue that MRIs and other "tests' which the doctors perform do actually do something. They give us statistics and studies, which hopefully one day will help to CURE MS. Without understanding this disease, without knowing who is likely to progress or even develop MS, without the statistics of what each drug does, what side effects it has, how it helps or doesnt- all of this is research towards a better future for our next generations. I wouldnt wish MS on anyone...but Im certainly glad that I was diagnosed in an age where we have drugs to help stave off relapses and tests where I wasnt subjected to sitting in hot water for an hour in order to see how my body reacts! (yes, before MRIs, they really did do that).

    To take a DMD or not, to have an MRI or not- these are personal choices and no one is forcing (or even suggesting ) that doing so is the "right" thing to do. But having choice is good....and being part of a bigger study, the study of MS and how to cure it- is something Im glad to take part in.
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    Old 07-24-2014, 05:10 PM   #9
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    Re: Seriously, what's the point?

    Quote:
    Originally Posted by carbo29 View Post
    If all the testing the doctor is requiring does nothing why do it? The results will not change anything. It's not like by knowing that there is a change it will affect the outcome. The dmd's have a 30% help rate. I do not say success because there can not be a success if it can't fix things, dmd's can cause cancer, liver damage and a few other nice things. There are no long term studies to prove anything. All the posted results from any trials are useless because the study time is short enough that the test subjects could just as easily gone two years without experiencing any major changes. Everytime I ask no one can give me a straight answer as to what these drugs are doing. They are not cures. They are cocktails of crap we are blindly putting in our bodies because we are told to do so. They don't stop ANYTHING.
    Doctors are in it for the kick backs. We are simply guinea pigs. We have no control over the course, so again I say, what's the point? To shell out thousands of dollars so you can tell me the results to nothing you can fix? No thanks. I'm good.
    Carbo... Again, I applaud the fact you don't just go along with anything the medical community tells you to do with your own body. Please continue to do your own research. That is how I found the article on medscape about three years being the effective time from for dmd's about 10 years ago. There was also a study released I read in the New York Time in July of 2012 that clearly talked about the inadequacy of dmd's. Please continue to protect yourself against the hopes of the medical community and the facts that are far more available via the internet than ever.

    It is ALWAYS your decision and I pray you will exercise your right to make decisions for yourself and not be bullied in to do something you feel is not appropriate for your own personal journey.

    GLTY!
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    Last edited by Prayer Warrior; 07-24-2014 at 05:11 PM.

     
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