Hello Soon to be Friends

New members should feel free to introduce themselves here

Hello Soon to be Friends

Postby Tisban » Thu Nov 03, 2011 1:47 pm

Well i hope we will be friends.

So I just found the site because I was wanting to be able to talk a little more about MS and I find it scares most people that don't live with it. I was told I had MS 5 or 6 years ago... I have never been that good with time. I am 32 now so I have been living with it for a while. I even think i was living with it for a while before i went to see the doctor. My first doc was not the one for me but my second one is great even though its been 2 years since i last saw her.

Back story, I woke up one day and noticed my face going numb. My mother tells me Aw its just a sinus problem. So i wait for a little bit and its not getting better. I go to the doctor and he doesn't see anything Sinus related but doesn't know why i would be numb. He finally breaks down and gives me some steroids and it clears right up. The week after the right side of my back and stomach go numb. That is when he sends me to a brain doctor. They do some scans and see some scars then they to a spinal tap and i think i had like 8 bands or 9 bands and that seemed to shock the doctor. She put me right away on rebif. This was the doc i didn't really like much.

Rebif was great but my lever doesn't like it. I get switched to copaxone and i get a new doctor which is a better personality fit to me. Over the next 3 or so years i have small attacks an arm would go numb or i would get dizzy spells (it seems my white blood cells love to chew on my cerebellum.) I might add i hate needles so i have stopped taking my meds again (i know its bad of me to get me on them last time my doc had me taking Xanax thats had bad i hate needles) I am starting to look at the new meds but i just worry about money. These last 3 years i have had two Son's and kids these days cost alot of money.

So in the last year my eye site has gone phoey and i wear glasses. I also get headaches all the time but the MS doc keeps telling me talk to the eye doctor and the eye doctor says wear the glasses and you will be fine... but i still get headaches.

The other part of the story is i am very dyslexic and ADD (sorry i know the story jumped around a little bit). But before i did anything else or start talking or asking questions i thought it would be better to introduce myself. So Hello I am Zak.
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Re: Hello Soon to be Friends

Postby lyndacarol » Thu Nov 03, 2011 6:04 pm

Welcome, Tisban (Zak), you have definitely found a group of new friends! You will discover that each of us may have symptoms in common, but we are each very, very different. We have different suspicions on the cause of MS, different ideas on how to treat it.

I, personally, do not think that MS is an "autoimmune" disease. I tried three of the injectable medications for many years, but saw no change, except continued deterioration, in my condition. I do not think it is possible to develop an effective medication until the scientists KNOW the cause of the disease. So I choose to use no MS medication at this time.

I currently think that diet is the best way to manage the disease; many people have had dramatic improvements on diet (http://www.TerryWahls.org).

All the best to you. We are happy to answer your questions as best we can (for the most part, we are ordinary people fighting this disease).
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Re: Hello Soon to be Friends

Postby Tisban » Sun Nov 06, 2011 9:33 pm

I have to say the Diet thing sounds interesting and i would love to be doing something about my MS not just waiting for the next problem. I can't say that i really have the money to pay 40 bucks for a dvd... wow that is pretty crazy costly. Do you know if there are any less costly or maybe even free resources on the topic?
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Re: Hello Soon to be Friends

Postby NHE » Mon Nov 07, 2011 4:25 am

Tisban wrote:I have to say the Diet thing sounds interesting and i would love to be doing something about my MS not just waiting for the next problem. I can't say that i really have the money to pay 40 bucks for a dvd... wow that is pretty crazy costly. Do you know if there are any less costly or maybe even free resources on the topic?


You could try getting her book from your local public library. That would be free!


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Re: Hello Soon to be Friends

Postby mgreenham » Mon Nov 07, 2011 10:14 am

I manage a neurorehab clinic have applied for an NIH research grant to study stem cell therapy in combination with hyperbaric oxygen for neuronal disorders such as PD, MS and anoxic encephalopathy. This is basic research with neural stem cells under various conditions during the production, differentiation and implantation processes. We will follow that with pre-clinical and clinical studies in 2012.

The reason for this grant is due to a publication showing HBOT increases stem cell mobilization in the body 800%
[http://ajpheart.physiology.org/content/290/4/H1378.full.pdf+html], plus clinical results from both HBOT and stem cell therapy independently, with the hypothesis that combined therapies might improve the function of SC therapy.

I have a family member and several patients with MS, and am following advocacy boards for reports of both successful and unsuccessful treatment experiences, and scientific publications.
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