hello and g'day from toronto, ontario (30, male)

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hello and g'day from toronto, ontario (30, male)

Postby kiwee » Tue Aug 03, 2010 4:09 am

hello all!
just found the forum and love the layout. seems like you guys have an educated group and i'd love to be a part of it (if you'll have me). :lol:
i've been an ms sufferer since 2002. started with tingling and optic neuritis.
in 2005 i had my first attack. playing in a golf tournament that resulted in me being in the sun for 3 straight days. felt really bad and went to the hospital where i was clinically diagnosed by the hospital's neurologist. started on a 5 day cycle of steroids then rebif.
been on rebif since then and i have been having site reactions since they changed their formulation in '08 (i think).
1 site reaction turned into an infection. been getting more and more lately and will be switching over to avonex in the next few days (waiting for training).
as far as my physical state, i would say i am fairly lucky and blessed. my issues are as follows;
- weakness in legs (still walking but limited) unassisted
- constant tingling in hands and feet
- optic neuritis
- poor bladder control
- constant fatigue
- the 'fog'
- forgetfulness
- do a lot of word searching
- leg spasms
- shaking in my left hand when doing fine movements.
i have had a few 'flare ups' where i have slurred my speech, trouble writing or holding a pen, spasms, paralysis.
30 year old male, raised in southern ontario. married, 2 kids. i am pretty active (workout 4-5 times per week, weight training), eat pretty well, taking fish oil, vitamin d (2000ius), veggie greens everyday.
been giving serious thought to getting the liberation treatment done in india. my only thought on this is i feel that i am at a pretty crucial point in my ms case and this could help me. but at the same time, i can't imagine leaving myself further incapacitated with a family from either the ms or the procedure. scared is an understatement.
any input on any of this would be greatly appreciated.
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Postby jimmylegs » Wed Aug 04, 2010 8:21 am

hi kiwee welcome to TIMS!
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Postby sbr487 » Wed Aug 04, 2010 8:51 am

kiwee, lot of similarities ... 2 sweet daughters ... not very much disabled ... i still work though I have had MS since 1995 :(

I am waiting for more clarity to emerge from ccsvi and one of the reason for that is that I am still not disabled, but I can see my health going down every week ... I am just going to hang on for now ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby L » Wed Aug 04, 2010 12:34 pm

Hey there.

Why not Egypt? Dr Sinan would be my first choice if travel weren't so difficult for me.
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Hi Kiwee

Postby Andie » Fri Aug 27, 2010 7:54 am

hello from Calgary

just wanted to say hi and made a connection

i was dx in 2005-- about 2 years or so to dx--

i was taking copaxone for about 5 years- neuro didn't think was helping so i started rebif about a week ago- going ok- so far- i'm not running marathons-- but still work full-time-volunteer and am mother to a fabulous 8 year old daughter.


hope to hear from you

Andiem
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Re: Hi Kiwee

Postby kiwee » Fri Aug 27, 2010 10:25 am

Andie wrote:hello from Calgary

just wanted to say hi and made a connection

i was dx in 2005-- about 2 years or so to dx--

i was taking copaxone for about 5 years- neuro didn't think was helping so i started rebif about a week ago- going ok- so far- i'm not running marathons-- but still work full-time-volunteer and am mother to a fabulous 8 year old daughter.


hope to hear from you

Andiem


hey hey!
as long as you are happy with the rebif. i am on my 3rd week of avonex and am loving it. once a week is amazing and the actual injection hurts LESS than the rebif with NO site reactions.
how are you liking rebif so far? i am sure going from once a day to 3 times a week is amazing.
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Kiwee

Postby Andie » Fri Aug 27, 2010 10:42 am

only had 4 rebif doses so far-- only .22 of the full dose--injection hurts way less than copaxone?? no idea why-- smaller needle perhaps? mild heachache and sore legs-- but r minor so far

has the toronto heat been bothing you?

A
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Re: Kiwee

Postby kiwee » Tue Aug 31, 2010 7:35 am

Andie wrote:only had 4 rebif doses so far-- only .22 of the full dose--injection hurts way less than copaxone?? no idea why-- smaller needle perhaps? mild heachache and sore legs-- but r minor so far

has the toronto heat been bothing you?

A


oh yeah!
pumping the ac like crazy.
i am on the home stretch, i'll be in india in 3 weeks for ccsvi! leaving on the 18th.
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ccsvi

Postby Andie » Tue Aug 31, 2010 7:46 am

wow-- you are getting ccsvi - good for you

please let me know everything about it

thanks
Andie
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Re: ccsvi

Postby kiwee » Wed Sep 01, 2010 4:21 am

Andie wrote:wow-- you are getting ccsvi - good for you

please let me know everything about it

thanks
Andie


are you on facebook?
i'll be posting a link to the group i made. i'll be doing daily video updates while there.
Last edited by kiwee on Fri Sep 03, 2010 10:14 am, edited 1 time in total.
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facebook

Postby Andie » Wed Sep 01, 2010 12:22 pm

Hi

no I have never been on facebook- but i guess i better figure it out so I can watch your progress.

all the best to you


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