recently diagnosed and scared out of my mind.

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recently diagnosed and scared out of my mind.

Postby lovetabitha » Sun Nov 04, 2012 2:48 am

My name is Tabitha and I am so thankful this message board exists.
We know when something is wrong with us. But try explaining knowing something is wrong with your brain and not look like you're insane. It ain't easy. Inexplicable fear of heights, panic attacks and anxiety replaced the fearless, stubborn girl ready for any challenge. Now I can't walk up stairs and escalaters make me sick from vertigo.

The first sign that I knew something was wrong was back in '07 when my right hand felt swollen to the point of pain and numbness simultaneously. It was so bizare, but despite the slow progression down into the left side of my body and the dozen or so doctors I went to, the refused to believe anything was wrong with me. But I knew and was therefore ridiculed by my family. Called paranoid and crazy often. Especially by my sister who blamed me for ruining my birthday for her when during my first flare up and vertigo experience she took me to six flags and expected me to ride roller coasters. I thought Batman gave me whiplash, I know now what it was. But it was a painful, nauseating experience nonetheless.

Then, winter 2010, after many mild episodes (I know what they are now!) I had my first real episode. It hit hard and fast. Pain, then anxiety, when dizziness followed immediately by vomiting any time I tried to move, and numbness over more than half of my body. After years of being turned away by doctors who refused to work, my mother told me she wouldst take me to the emergency room despiate something being very visibly wrong with me, and still I wasn't diagnosed. And told there wasn't anything wrong with me by not only doctors, but my mother as well.

This last July, end of summer classes I had another attack, and this one was worse than he last by far. It started as pain again, but in my ear. I knew immediately it was like last time so I told my mom and she told me I was paranoid because there wasn't anything wrong with me other than ridiculous panic attacks and not worth going to the emergency room yet again. At first, she was right- the er doctor couldn't see a gun shot wound, so there wasn't anything they could do, but then he passed me off to internal medicine, and after almost 24 hours in the er, the internal medicine doctors had an idea of what might be wrong with me and introduced me to the spinal tap doctor. It was horrible. Curled into a ball, dizzy and wanting to vomit while beige stabbed unnecessarily in the back over and over again, just to be told it wouldn't work without a special machine that exrays the injection to hit the spit just right because I'm too fat. So I spent 5 days in the hospital, luring my speech because my tongue and throat were numb on the right side, until my tests came back positive for MS.
Made my mom felt like shit fir not believing me and making me suffer, but that was no comfort to me. I had 3 lesios on my brain that will eventually going to cause ne to become paralyzed. Taking away my ability to do the things I love- play my guitar, write, draw. Many tears were shed when I found out that my future holds.
I'm terrified constantly. I can't shake the anxiety anymore now than when I didn't know. I don't want to feel the vertigo, the semi paralysis. It scares the living hell out of me. I couldn't do the things I used to- brushing my teeth, using the bathroom, bathing were all done by my mother while I was in the hospital and a few weeks when I came home because I couldn't take care of myself physically.

I'm being assured by my neuro and primary that the medication I'm taking, betaseron, will help, but there's a 33%chance I won't get any better. I just don't know how to wrap my brain around the entire situation and deal with it. I feel so lost and alone.
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Re: recently diagnosed and scared out of my mind.

Postby jimmylegs » Sun Nov 04, 2012 5:35 am

welcome to the forum - you're not alone :)

at one time i couldn't play guitar and it sucked. i couldn't type, write, anything. i had to fix my diet. i have some permanent damage and i'll never be as good at guitar as i could have been. but i can still play. and i'm typing normally right now. so, there's hope :)
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Re: recently diagnosed and scared out of my mind.

Postby lyndacarol » Sun Nov 04, 2012 11:42 am

Welcome to ThisIsMS, Tabitha. Jimmylegs is absolutely correct – YOU ARE NOT ALONE! You have found a group of people who understand and want to help you.

You are right – we know when something is wrong; you did the best you could to get help, unfortunately the medical community let you down. In my opinion, the basic problem is that the experts have not identified the CAUSE of MS. Until they know the underlying problem, their "treatments" are simply stabs in the dark.

There are many different suspicions at this website; MY own revolves around visceral (internal) fat and the excess insulin it causes. In describing your experience with a spinal tap (lumbar puncture), you mentioned "being fat" – unless you are eating a diet FILLED with carbohydrates, I suspect that your pancreas is producing excess insulin (a.k.a. "the fat storage hormone"). My standard recommendation is "ask your doctor for a 'fasting blood insulin test' (this is NOT the same as the simple blood sugar test done for diabetes);" the optimal result for this insulin test should be 3 UU/ML or below. (My first test resulted in 12; nothing later has been below 9.)

I think most, if not all, of your symptoms are due to insulin resistance in the muscles resulting from the excess insulin. I think the symptoms can be reversed – back to normal – if the insulin and insulin resistance can be reduced. I think this is what happened to Dr. Terry Wahls, after following her diet and exercise regimen for about three months. (http://www.TerryWahls.com)

All the best to you, Tabitha. We are glad you found us.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: recently diagnosed and scared out of my mind.

Postby want2bike » Mon Nov 05, 2012 7:36 am

Check out the diet section. Our health is the result of the food we give the body. Drugs are not the answer.

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

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu
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Re: recently diagnosed and scared out of my mind.

Postby leetz » Mon Nov 05, 2012 5:02 pm

jimmylegs!!!! so good to hear your improving:)) Newbie...may God bless you, you are not alone. It is very scary. Keep on top of your research and trust your body at all times :)

Welcome:))

Leetz
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: recently diagnosed and scared out of my mind.

Postby jimmylegs » Tue Nov 06, 2012 3:05 pm

hey leetz :D yeah i am SOOOO much better off than i was in '06. night and day!
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