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I Hate This...

I was diagnosed with MS the last week of May 2008.

My right side had gone completely numb; I couldn't keep my balance; and no matter how much weed I smoked, I hadn't been hungry in weeks.

The nuerologist immediately sent me to the ER to get an MRI and about two hours later I had confirmation of all my worse fears.

I started sobbing immediately because I had plans to study Arabic in Morocco this summer and I desperately wanted to go.  My parents didn't say no, but they seriously doubted my ability to go on such a trip.

After I was released from the hospital, I immediately began to do everything I could to ensure I would get to go to Morocco. I stopped eating gluten and dairy; i started to take tons of vitamins and met with  a nutritionist who specializes in MS and other autoimmune diseases.  I rested and rested, not allowing myself to be fooled on the days I felt better.  But even then I had to delay the start of my studies by a week.

When I finally arrived in Tangier after 20+ hours of travel, I was completely beat. Unfortunately, there were no taxis left by the time I and the other student managed to gather our luggage and- after waiting an hour, hoping one might appear- we were forced to walk 3.5 km in the fierce mid-day heat to a nearby bus. 

Even though we had very pleasant conversations as we wandered along the dusty highway, I thought I would die by the time we reached the bus stop. The guy who picked us up handed me a tissue and said, in this very matter-of-fact voice, "you look like ****."  I'm sure I did.  I felt like **** when I got off the plane, let alone after a walk with my over-loaded backpack.  I then passed out for the rest of the trip, waking only to switch buses and drink some water.

Fortunately, things got better after that.  I chilled the first few days, eating well, and sleeping plenty.  I even showed up an hour and a half late to my first class because I decided, as a sufferer of MS, I deserved to sleep in.

But once I allowed myself those few days of recovery, I had such an amazing time.  It was so wonderful to feel better, to not be stuck in my bed, resting all day.  Instead I was exploring the world and doing everything I had wanted to do long before I ever had this ****** disease.

I actually liked telling people I had MS because of the shock on their faces.  I often saved it for moments when they would appreciate how much I struggled to get to Morocco or how hard a hike to an amazing waterfall had been for me.  My favorite reaction was when I was getting ready to go out with a new friend of mine and we were discussing why I had all these perscription drugs and how much fun certain ones were to take.  She was shocked I had managed to convince my doctors to prescribe me all these things.  Of course I hadn't had to convince them at all.  I needed most of them, so I told her how I  had been diagnosed in May and she almost started to cry, but then she said, "I do the MS walk every year, but I never knew anyone who suffered from it.  Now I'll do the walk for you."  I know that sounds cheesy, but I really meant a lot to hear her say that....

After about two weeks of being there, I had almost forgotten I was even sick.  Then my mother reminded me over the phone that I had to start my Avonex injections when I returned.  I then began to dread returning home.

I spent the next three weeks trying to pretend I wasn't sick.  I stayed out as late as I wanted.  I ate lots of bread and dairy and tons of cafe con leche.  I forced myself to take long walks in the heat of the day.  I pulled all-nighters to finish my arabic homework, write letters to friends, and catch up on my reading.  I wasn't sick.

Then I traveled back to the states.

By the time I got to JFK, almost 20 hours after I left Morocco, I was a mess.  I was too weak to carry my bag to the skycap desk and I began to cry.  But there are good people in the world and a very nice woman (employed by AA) and a skycap helped me with my bag and put me at the front of the line because I was late for my flight.   I looked like **** and I was crying when this *****-- who has her perfect makeup on, her fresh clothes, her perfect hair-- tells me to get to the back of the line.  Things quickly fall apart and I end up screaming at her, repeatdly, "SHUT UP *****.  SHUT UP *****!"  She eventually shut up, but not after I had completely embarrassed myself with my uncontrollable rage.

I eventually got back to Chicago (home) but I felt terrible.  I spent the whole night puking, suffering extremely painful charlie horses.  I hate this disease.  My symptoms-- which had disappeared in Morocco-- immediately returned.  I was exhausted.  My right hand is numb again. I hate this.

I started the shots yesterday and I hate this disease even more.  I now feel like **** and the nurse made it very clear I would be in a wheelchair with a ****** up brain if I didn't take the medicine.  I hate them.

I just want to forget I have this disease and run far far away to a place where no one would know what this weird disease is.

taliba85 taliba85 22-25, F 8 Responses Aug 13, 2008

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Hey, do you have silver fillings? Mine caused 70 symptoms of MS: from ataxia, numbness of my toes and fingertip, "a burning brain," loss of peripheral vision, hypoglycemia, depression/anxiety/mania, memory loss, chronic fatigue, chronic sinusitis, vertigo, bladder infections, and a host of other symptoms.<br />
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This is because silver fillings are 50-70% mercury, which is released into the body as ethylmercury vapor. Anywhere from 3-29 micrograms of mercury are released by these fillings every day. The symptoms of MS and mercury poisoning are effectively the same. I got them removed and most of my symptoms are gone, I just have to spend a few years getting rid of the residual mercury from my tissues. Believe me or not, I honestly don't care. It's not going to be the case for everyone. I just know it worked for me.<br />
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Also if you've been exposed to a lot of thimerosal from vaccines, this could have triggered it. Also the government is now admitting that Hepatitis B vaccines can trigger demyelinating diseases. Check out the FDA's website if you want to confirm there is mercury in vaccines. No level is safe, considering it's more toxic than lead and arsenic. It is the most toxic non-radioactive substance known to man. I have nothing to gain telling people this, only the hope that someone can recover the way I did. It's my hope.

Hi I was diagnosised in April 2008, and it still feels like yesterday. <br />
I hate MS, and hate what it has done to me, my family and my mind. I was the person who could figure out any thing, Now the smallest and most routine things are a constant strunggle.<br />
I now understand what they mean when people don't die of the MS but from th depression. I would never do that no matter how bad but my goodness what a fight every day to just get out of bed, move & try to appear normal! The littlest things set me off, stress me out & make me fell horrible & run down.<br />
I hate people that say " You look fine" when they find out I have MS. <br />
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WOW! who thought you were able to see someone's medical problems? Can you always see that a person has cancer or Lupus? <br />
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I hate the pain, feeling tired, and just plain old crankiness.<br />
I'm sorry how do you expect to me to feel and act when I'm in so much pain & tired all the time?<br />
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I was very positive in the begining and still push thru but it's so hard. I'm on Copaxone as the Beta Seron only made me worse & feel sicker. Copaxone is supposedly working (per my MRIs) but I don't feel any better just worse!. Yes I have good days but they aren't consisstant. <br />
I cherish the good days but still hate the days & sometimes weeks that keep me in bed.

Hi...I am too struggling with all the many new limitations this horrid disease has to offer,Hang in there and try to think of this as a new challenge .i think if we can just remember how good it feels to make a plan and and overcome we will be okay...am having the hardest time right now trying to type this ....i was crying my eyes out today and looking for some kinda support and came across your story and knew i wasnt alone. you sound like an amazing person to take on such an endeavor and with your strength of spirit i have no doubt you can you will take on m.s. like you did arabic.

Hi...I am too struggling with all the many new limitations this horrid disease has to offer,Hang in there and try to think of this as a new challenge .i think if we can just remember how good it feels to make a plan and and overcome we will be okay...am having the hardest time right now trying to type this ....i was crying my eyes out today and looking for some kinda support and came across your story and knew i wasnt alone. you sound like an amazing person to take on such an endeavor and with your strength of spirit i have no doubt you can you will take on m.s. like you did arabic.

I enjoyed reading your story. I have been diagnosed since 2001. Stay on the shots because they do help slow down the progression of the disease. Do whatever you can do without over doing it, body, mind and soul. Exercise as much as you can, challenge your mind as much as you can and stay strong spiritually.

Yikes! I'm sorry for your troubles. But do like you did before, stay off the wheat & dairy etc. If you read your story, you started all that stuff before you came back. That didn't help any. Your body was all messed up. I was diagnosed in '95 & just started Copaxone 18 mos. ago. Knock wood, it's working for me.<br />
That's interesting how you felt about that lady doing the MS walk & now she'll dedicate her time to you. My mom's friends daughters (back home in Denver) walk that walk & told their mom, they walk for me. I had NOO idea as I don't know them that well... it made me cry.<br />
Stay strong!! Keep doing what the doctors say. Eat healthy & exercise if you can. Even water aerobics or something easy like that. You don't have to climb mountains ya know!!! lol<br />
Hugs!!!

Things will get better, focus mostly on staying positive, like you said when you were away you were ok, but as soon as you got back you were reminded of your dreadful disease. So that should prove to you, that staying positive. One major thing you dont want to do is stress yourself out, stress will trigger your symptons. I know the shots are awfull, but what would happen if you did not take them. Do the things in life you enjoy whenever possible, dont let this monster slow you down. And always remember to always rest when you are exausted, just that five minute little cat nap can make a difference. Im glad you had fun abroad, and try not to let this get you down, from readind your story you are a go-getter, and keep that up. I've been diagnoised since 2004.

hi there and welcome. Experience Project started off as a multiple sclerosis support community. We adore MS'ers and have a soft spot in our hearts for anyone dealing with this condition. <br />
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Please let us know how we can help-- and we hope you enjoy EP.