For the newly diagnosed - from a (sorta) old timer

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For the newly diagnosed - from a (sorta) old timer

Postby Sweezo » Sun Jul 01, 2018 1:37 pm

This post is for the newly diagnosed. I remember being where you are and feeling scared as hell, thinking that my life as I knew it was over. My mother also had MS and it was very severe. She couldn't walk, feed herself, take care of any of her needs, and could barely talk. She was almost bed ridden. She died from MS four years after I was diagnosed. That was 18 years ago.

I just wanted to give some reassurance to the newly diagnosed. Your life isn't over. Treatments today are so much better than they were even five years ago. When I was diagnosed, there were three options: Copaxone, Avonex, or Betaseron. Today, there are over a dozen and some really promising ones fairly far into the pipeline.

I got on medication almost right away and have stuck with it. I am doing very well. I have always worked full-time in a more than 40 hour a week job. We had only one child when I was diagnosed and we went ahead, on faith, and had a second child. She is now 15 years old and we are so glad that we did. I have had a few flare ups over the years, but they were all manageable and they have all mostly resolved. In addition to taking a disease-modifying treatment, I took care of myself with diet, exercise, and stress management. Nothing in particular - just tried to live as healthy a life as possible.

This is far from a scientific observation, but the people I have known who did not take any DMT have not fared well. Don't fool yourself into thinking that doing nothing or just doing "natural" treatments is going to keep this disease at bay. It might, but the odds are not with you. Why not do all that you can to keep yourself well, including those things that have evidence-based information to back them up? I am not against natural treatments, but I wouldn't do them without also doing something that a controlled, clinical phase III trial has shown to be effective. Just my two cents for what it's worth. Take it or leave it.

I just wanted to give some peace and hope to the newly diagnosed that this disease can be managed and you can have a full, wonderful life even with MS being along for the ride. Keep your chin up, educate yourself, advocate for yourself, take your medication, and give the rest to God. You will be okay.
Sweezo
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Re: For the newly diagnosed - from a (sorta) old timer

Postby Kittie » Mon Jul 02, 2018 1:42 am

I agree diet, exercise and stress management are a good way to lead a healthy and long life.

As far as the MS drugs are concerned I never touched them and never will. I am here today because I didn't take them! I have found vitamin D3 to be my saviour.

I was diagnosed in 1980 and had MS way before that, probably in my early twenties, and I am now 70 years old. I am still walking, just about, and last year felt the MS was really starting to take hold. Last November, 2017, I started on the D3 protocol with Michael Cawley who was trained by Dr. Coimbra in Brazil. I feel so well now and would recommend it to anyone as it is a natural way of healing and giving the body what it needs. You do need a protocol doctor though.

Kittie.
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Re: For the newly diagnosed - from a (sorta) old timer

Postby Zyklon » Mon Jul 02, 2018 2:21 am

Welcome :)

+1 to every word of you. DMD Diet Exercise LessStress
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: For the newly diagnosed - from a (sorta) old timer

Postby ElliotB » Mon Jul 02, 2018 6:32 am

"This is far from a scientific observation, but the people I have known who did not take any DMT have not fared well."

Many people who do not take DMDs do well, it is just the nature of the illness.

I take a DMD and yet I am aware that there is no compelling evidence that the one I take or for that matter any of them really, really work. It is believed that they do, but there is truly no way to know for sure. My brother also has MS, has for almost 20 years, follows no special diet, does not takes and has never taken a DMD , is overweight, eats all the 'wrong' foods, doesn't exercise - you get the picture. And is doing extremely well!!! Frankly I wish I had his energy!
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Re: For the newly diagnosed - from a (sorta) old timer

Postby Zyklon » Mon Jul 02, 2018 11:20 am

ElliotB wrote:"This is far from a scientific observation, but the people I have known who did not take any DMT have not fared well."

Many people who do not take DMDs do well, it is just the nature of the illness.

I take a DMD and yet I am aware that there is no compelling evidence that the one I take or for that matter any of them really, really work. It is believed that they do, but there is truly no way to know for sure. My brother also has MS, has for almost 20 years, follows no special diet, does not takes and has never taken a DMD , is overweight, eats all the 'wrong' foods, doesn't exercise - you get the picture. And is doing extremely well!!! Frankly I wish I had his energy!


MS is one heck of a disease. It is kinda like Joker. Laughs all the time, occasional jokes, evil inside and this famous quote fits extremely well for MS:

"Do you wanna know how I got these scars(lessions)?"

Every MS story is huge and different...
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
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Posts: 242
Joined: Sun Apr 16, 2017 1:45 pm
Location: Turkey


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