Just stumbled on this site and wanted to introduce myself

New members should feel free to introduce themselves here

Have you ever had a doctor "fire" you as a patient for attempting to be your own advocate.

Yes
3
43%
No
4
57%
You mean doctors can do that?!?
0
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Total votes : 7

Just stumbled on this site and wanted to introduce myself

Postby BarefootArtist » Wed Jan 08, 2014 8:42 am

Hi, I say stumbled although I am sitting but I do tend to stumble quite often so it seemed to fit :wink:
I am a 40 something female with a MS diagnosis for the past 19 years, although they said I probably had MS since my early teens. I was forcibly retired from nursing about 13 yrs ago, and went back to school for a degree in forensic psychology. Due to recurrent health problems I never finished my doctorate, but instead went to doing what I had wanted to do since my teens - ART! Besides being very therapeutic, it helps pay the bills.
I decided very early on in this journey with MS, that I would not let this disease have me, just because I have it. Staying in control of something as devious and tricky has not always been an easy journey. I spent just over 10 years injecting myself with Copaxone, which seemed to be working fine as far as I could tell. Sure I had a few exacerbations every year or two, but considering the number of lesions the doctors have said I have, I considered myself to be doing great. That is until the injections site problems became worse, and shortly after one injection I couldn't breathe, my heart was racing and my skin flushed and itched terribly. Being the typical stubborn red headed ER nurse, I promptly too an epi injection and drank down a bottle I f liquid Benadryl I had for my dogs. I kept a watch until the symptoms subsided, and reported it to Teva. They didn't think it was the Copaxone but told me to stop it immediately.
I went another 7 or 8 years on nothing except the occasional attempts to start Avonex or Betaseron, both with poor results as the same things were happening. It was finally determined that it was the diluent used to liquefy the medication, which is the same in all injectable MS modifiers (or so I was told the same) that was causing an allergic reaction. The end of December I started the Tecfidera. I was holding out waiting on an oral drug. So far, so good I think, but it am still wary of any chemical I put in my body. I had to fight all those years to keep off the others drugs, even being fired as a patient by one bull headed neurologist. But I made it to here and today, and I am still walking and stumbling through life, and it is a good life even when I get down and wish some of it to be different. I can live with what I want to see changed, and I will keep on working to change it. Not that I have typed far too much here and no one wants to read this much, I wish the best for all if us here, because life is a beautiful thing no matter what troubles follow us through it.
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Re: Just stumbled on this site and wanted to introduce mysel

Postby lyndacarol » Wed Jan 08, 2014 8:59 am

Welcome to ThisIsMS, BarefootArtist. We are glad you stumbled across us. You will be a great addition to our community.
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Re: Just stumbled on this site and wanted to introduce mysel

Postby ladygil79 » Thu Jan 09, 2014 8:58 pm

Hi I am new here too and newly diagnosed. I really admire your attitude and I hope that I will have the same determination also. Right now I am just trying to come to terms with the disease but I have also decided it wont have me! Nevertheless I am scared shitless.
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Re: Just stumbled on this site and wanted to introduce mysel

Postby want2bike » Fri Jan 10, 2014 6:15 am

You are right to be afraid of the drugs since drugs are a big problem to getting better. There is no reason to be afraid of MS or any other disease once you get the information. Once we understand the truth the cure is within each of us. All we have to do is get the information, stop putting toxins in our bodies, and give our bodies the nutrients we need to repair ourselves. It is so simple but we have to do it.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.youtube.com/watch?v=_dhlp8jSiiU

http://www.healingdaily.com/Doctors-Are ... the-US.htm
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Re: Just stumbled on this site and wanted to introduce mysel

Postby ladygil79 » Mon Jan 13, 2014 1:30 pm

Yes it is just going to mean for me to educate myself fully so I am aware of what I am putting into my body. Thank you for the links. I am much more hopeful this last few days. I think it was just a shock to me. My moms best friend during childhood had MS so I had a picture in my mind of what the disease could be. Now I know it really is not what I imagined, not for everyone anyway.
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Re: Just stumbled on this site and wanted to introduce mysel

Postby want2bike » Tue Jan 14, 2014 11:07 am

MS will be what you make it. When you get the information and do what needs to be done you get your health back. If you keep doing what made you sick you will not get better. It is up to you. You have control of your health.
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If you aren't scared when you are told you have MS....

Postby BarefootArtist » Tue Jan 14, 2014 8:50 pm

There is something even worse wrong than having MS.

I was reading through the replies here, and just thinking to myself how we are all in "the same boat" and it's no cruise ship, but it is what we make of it. Learning about the disease is not fun, in fact its a royal pain in the bum! So much info, and changing almost daily. It can be difficult to determine what information is accurate and what is based on certain persons course of the disease or the beliefs of some who may not be informed at all on what MS is and does. Even with a medical background, I found myself questioning where certain information came from and just how much credence I should give it.
It has to be an individual decision we each make. I spent the first two years determined to stay off any chemical modifiers and keep what was going into my body as "pure and organic" as possible. Then I started seeing a neurologist I could trust. It's very important to be able to trust your healthcare providers, and in this day and age that can be very difficult.
I started on Copaxone, but I couldn't see a difference in my physical health. I only saw the good it was doing after I had to stop. I spent several more years fearing a similar allergic reaction and letting my fear keep me from trying all the avenues that were available.
Fear is a completely "normal" and expected reaction to a diagnosis like MS. It's ok to be scared, but staying scared isn't. A person can stay scared, but that will destroy them as bad as the demyelination from MS lesions does. I really think an attitude of fear, anger or any negative emotion will just fuel the disease and strengthen it.
I think I am probably losing track of what I'm writing (another lovely side affect of the cognitive problems with MS), but hopefully I made some sense before the brain drain got me and the cog fog rolled in.
Life is a beautiful thing, nothing and no one can take that from you. Don't give anyone the strength to affect you that way. Your going to need that strength for yourself so you can be the strong one.
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Re: Just stumbled on this site and wanted to introduce mysel

Postby want2bike » Wed Jan 15, 2014 7:05 am

Life is a beautiful thing once you get your health back. Once you have been to the bottom and think being dead is better than being alive there is no more fear. Hope you never have to get there. Each of us is responsible for how we treat disease. We can listen to the doctors who push the drugs or we can take control of our health by finding the appropriate diet. Doctors with their drugs are a leading cause of death in our country. They tell us this in JAMA which is their own magazine. I get so tired of watching the advertising of these drugs on TV. Why don't they let the doctors push their drugs instead of marketing them directly to the consumer. People are waking up to this. Now they are trying to give the flu shots away for free. That is because they can't sell them. They have to force these flu shots on the medical community. Nurses lose their jobs because they refuse to take the shot. Too much information out there about what these chemicals are doing to our bodies. Our body are constantly trying to heal. All we have to do is give it the nutrients it needs and stop putting bad chemicals in it. As the father of medicine told us year ago, "Let your food be your medicine and your medicine be your food". Nothing has change. It is still the path to good health.

http://www.healingdaily.com/Doctors-Are ... the-US.htm

http://www.direct-ms.org/rogermcdougall.html

http://articles.mercola.com/sites/artic ... =398146886
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Re: Just stumbled on this site and wanted to introduce mysel

Postby NHE » Wed Jan 15, 2014 10:56 pm

want2bike wrote:Our body are constantly trying to heal. All we have to do is give it the nutrients it needs and stop putting bad chemicals in it. As the father of medicine told us year ago, "Let your food be your medicine and your medicine be your food". Nothing has change. It is still the path to good health.

I'm not saying that a healthy diet isn't beneficial, but there are some diseases for which diet can't fix. Sickle cell anemia is one that readily comes to mind.
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Re: Just stumbled on this site and wanted to introduce mysel

Postby THX1138 » Wed Jan 15, 2014 11:13 pm

Hey, don't all you guys know that sickness comes from drug deficiencies/imbalances? :roll:
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Re: Just stumbled on this site and wanted to introduce mysel

Postby jimmylegs » Thu Jan 16, 2014 7:35 am

our chat touched on sickle cell anemia and iron transport issues in November:
introductions-f20/topic22546-150.html#p218447
" 'Patients who have this combination of too much and too little iron are individuals with cancer, acquired or inherited disorders that result in faulty blood cell production or blood cell management. Some of these diseases are thalassemia, sickle cell disease, sideroblastic anemia, enzyme deficiencies, bone marrow problems, iron-transport protein problems.'
mention of acquired disorders, enzyme deficiencies and iron transport protein problems bring me straight back to my old friend zinc.. "

building on that thought, with specific attention to SCA:

Determination of Cu/Zn and Fe in human serum of patients with sickle cell anemia using radiation synchrotron (Canellas et al, 2012)
http://www.ncbi.nlm.nih.gov/pubmed/22364784
"It was possible to determine the concentrations of the following elements: P, S, Cl, K, Ca, Fe, Cu, Zn, Br and Rb. Moreover, there are evidences of an association among Fe, Cu, Zn and Cu/Zn in the SCA pathogenesis process. The concentrations of Fe and Cu in the serum samples of patients with SCA were larger, 120% and 20%, respectively, when compared with the CG. The serum level Cu/Zn ratio was significantly higher (60%) in the serum samples from patients suffering from SCA than from the CG"
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Re: Just stumbled on this site and wanted to introduce mysel

Postby saimamom » Thu Feb 06, 2014 3:34 pm

Hi, I'm an artist as well. Although I'm not actively selling or showing my work at this time. I'm raising three busy kids and two dogs. I just wanted to let you know that the dizzy/flushing issue with Copaxone is a side-effect. I was warned about it by a nurse. And it happened to me twice. But I also developed daily hives and frequent shingles. My neuro told me none of it was from Copaxone. But as soon as I quit it was all gone. And I haven't felt better in my life. I'm taking a holistic approach. And I know that seems scary and crazy. But I've been symptom free for 5 years.
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