hi all - new to the forum, my story

i'll try to make this as brief as possible.
i am a 29 year old male, living in toronto, ontario. athletic, 6'2" 190lbs.
back in 2002 i was playing basketball and noticed a small little black spot in my vision field. wherever i looked, it would move. a few months later, i started experiencing tingling in my hands and feet.
i immediately started googling these 2 things and came to the realization that i may have ms.
in july of 2005, i was playing golf in a family tournament and following 2 days of exposure to the sun and heat, i felt dizzy, couldn't walk straight and a general feeling of sleepiness.
after 3 days of this, i walked/stumbled into my area's hospital through emerg and was seen by their neuro.
he performed a clinical exam on me and stated that 'clinically' i appear to have ms and i was in the midst of an attack. i was partially relieved as i now knew what was wrong with me. he booked me in for some bloodwork, mris and immediately got me started on cortizone administered through iv for a period of 10 days.
following the ivs, i got started on rebif.
after the attack, i was left with blurred vision in my right eye.
now, in 2009, i have weakness in my legs, poor bladder control, poor vision (still okay for driving), lots of tingling in my hands and feet and a few other things i am sure i am forgetting.
here is my outlook on this, NO ONE will ever understand this disease unless they have it. trying to explain your body attacking itself vs. an infection sounds crazy, but is the truth.
i have heard numerous people say, 'yeah, my neighbour has ms. sometimes i see her in a wheel chair, sometimes she is walking.' my response is simple, unpredictability. not knowing what your body plans on doing when it plans on doing it. it is kind of like an 'x' in a math equation. FUN!
i am a very religious person. all i can do is hope that everyone affected by this disease will somehow and someway find the good in this.

[jensequitur]

I think it has a lot to do with where the majority of the damage is in your brain.  People with right-side organic damage tend toward unreasonable optimism, while people with left-side damage are more likely to be depressed.  

[sllowe]

Hi Kiwee,

Yea, you said a mouthful there ref. others and understanding.  It really can be such an invisible disease - it's so deceiveing! And, like you say a lot of folks make comparsions, but ain't two of us exactly the same.

Thank you so much for joining us - hope to see you around!

Oh, how long on the Rebif now? Besides your symtoms (symptoms) have you had any major attacks while on it?

-shell

[Military_Wifey]

Thanks for sharing your story! It is extremely misunderstood....often inspite of a person's best intentions. My own sister told me a friend of hers told her that her brother has MS and is doing pretty good, not in a wheelchair,etc.......so my sister says she decided she doesn't need to worry and I will be just fine too since we both have RRMS.

I am hoping she meant that to cheer me but it actually upset me. Why? Because it made me feel like if I was to have more disability then her friends brother that it would be like I made it up because he doesn't have it,therefore I can't either. Also, it made me feel like I was being told I am worrying for nothing and being silly. You are right, no one knows until it's them because we are all so different.

-Dee

[jensequitur]

I've had people tell me that their sister/brother/motherinlaw was diagnosed with MS, and they're 'getting along just fine.'  Great!  I say.  Then I say "MS is like Russian Roulette - you never know where it's going to strike."

[HVAC]

You hang in there we understand.
Alex

[Lulu54]

hi and welcome to the MedHelp MS forum - I hope you will come around often and share more of your story.

Siddy posted this link and it is in another active thread but I copied it here too because I want you to see this

http://www.youtube.com/watch?v=DvaJ9py-vOc

The hour video here is absolutely the best I have seen to explain MS and the frustrations you discuss here.  If you can, I would invite your family to view it as well.  And your friends, And your neighbors.  Maybe even the postman.  It is that good.


I love the math =X analogy.  Those mystery equations are always fun to discover the answer.  

be well,
Lulu

[kiwee]

thanks guys.
things got a little crazy and i haven't been able to check back in since my orig. post.
few things;
- been on rebif for 4 years now, no attacks since, just things popping up every now and then.
- i am very active. in the gym 4-5x's a week plus i have a 2.5 year old at home who keeps me pretty busy.
- my friends and family are super supportive. the 2 major things that have helped me is; 1) them not asking how i am doing (when people do ask, it bothers me as it seems almost too sincere)
2) if asked to do something, and i say no i can't/won't, them just understanding
having a son is awesome, but can be very frustrating as well. my legs get very tired right now. there are times when he wants to be carried and/or i can't do what he wants me to. in the future, i know that i won't be able to play catch, basketball, golf, etc with him as i can't even do those things now. all the father/son bonding things.

[kiwee]

best memory so far; falling up a set of stairs in ikea. AWESOME!
thankfully, i was fine.