Calling all Canadians

[nepcan]

Mistake with name at the bottom of my message.

Hi 'kid',

Welcome to the Ottawa group. I'm so glad to see someone else here from Ottawa. I'm 49 and in 2 months the big #50eeek.

I've been diagnosed in 1987 but had it much longer than that. Took 10 years to finally get the diognoses right. Thanks goodness because they were ready to give me electric shock treatments because they thought it was just in mind. I had said no at the time and just kept the struggle of finding out what was wrong at the time.

I do have to say that 'Rebif' is a great therapy. If you know the EDSS scale, I was dignosed at one point as a 6 but put on 'Rebif' I managed to get my sight back (triple vision) out of the electric chair (Ido strength training at home) and I had a good 8 years. Used a cane a lot of the times and sometimes without my cane. I ended up having to go off that therapy because it started to affect my liver. They have me now on Copaxone and I'm not convinced that it's working quite as well. I have a doctors appointment tomorrow that determine what changes have happened since last MRI was done.

As far as summer goes....I'm just enjoying it as much as I can since it is so late. The only good thing about summer being so late was the heat and humidity kept the MonSter at bay. I always seem to have a great deal of problems when the humidity is high. I sometimes think I would like to move somewhere with less or no humidity but I always stick close to home and my medical team here in Ottawa.

Take care of yourself and keep informed with what is available for MS. Always best to keep on top of things as doctors don't always know everything. How can they keep up with everything available.

Take care 'kid' and hang in there. Glad to see someone from Ottawa.

Sheryl

[kid1971]

summer

Yes it is beautiful here right now Thanks for the warm welcome. This is a MonSter for sure. I'm originally from Northern Ontario and moved to Ottawa a year ago. Considering moving back...

[laurakim]

Hi kid,
Sorry you've got MS but you are in an elite group
We've several things in common: I was also diagnosed thru MRI, looking for something else, I lost hearing in left ear (did yours come all the way back?) and although I don't live in Ottawa now, I was born there and have lived there 17 yrs on and off.

Glad you and your dmd are getting along for the most part You've got a good attitude, so important in dealing with this MonSter.

Hope to see you around. Very few people ever post in this forum, I generally hang out in General Questions and Progressive forums. There is a lot of good info and knowledgeable, fun people.

Again, welcome!! Maybe introduce yourself in the General Questions and Answers forum, too.

PS I hear Ottawa has been having their summer in September.
Laurakim

[kid1971]

another of the Ottawa contingent

Hi there. 38 years old and diagnosed several years ago in an MRI for another reason. No problems until June 2009. Relapse consisted of severe vertigo, loss of hearing on left side and left side facial paralysis. Thankfully I'm all better!!!!

I just started Rebif on Sept 11th. So far I am dealing well with it. The injections don't hurt and the side effects aren't horrible, just annoying. Trying to keep a positive attitude and not let this horrible disease get me down. I'm only on 20% of the 22 mcg though. I hope the worst isn't yet to come.

Nice to see fellow Canucks, and especially from Ottawa.

[harleychicky]

I Laurakim,
Thanks for the wish for a good retirement...I had a complete other plans for it...After 29 yrs serving and just 47, I taught I'll be free of doing what I want..but NO..The MonSter got me..
I was Dx in Feb 09...I am doing OK as Sx but scare how it will turn to be...Don't know how long I have this but think it been about over 15 yrs when I was in Pet...
Hope all is good with your new acc...
Later

[laurakim]

Hi harleychicky,
I'm not a member of the military, but an ex- dependant. Hubby retired with almost 35 yrs service, 5 yrs ago.
I just wanted to say hello, there aren't many answering here. I hope your transition goes as easy as ours did, enjoy your retirement!
Laurakim

[harleychicky]

I am wondering if there is any canadian military members in here or retired...with MS? I will released in Nov for other medical and was dx MS in Feb...No advantage from VAC about the MS..

[laurakim]

Edmonton is home

Hi SherryO,
I sure hope you didn't receive any of that wicked weather we saw on the news yesterday.

Congrats on finding a good neuro! Respect and trust are so important. Throw in liking the person and that's a contented relationship. It took me 16 years, we moved a lot, to find my ideal neuro.

I'm fairly new to the forum. Not to MS. Symptoms in '90, diagnosed in '92, became secondary progressive in 00. We very recently moved into an assisted living condo. Life has changed but I'm actually looking forward to having more independence.

Husband and I can account for 29 years together. We have a 21-yr-old son, amazing how he gets older while I never do

Look forward to talking with you again,
Laurakim

[SherryO]

Oshawa is home

I haven't been on in ages, lots of health issues on top of SPMS.

I recently requested that I would like to change neurologists. I had originally been referred to Dr. Marica Hohol at St. Mike's. I have no doubt that she probably is very compatent but, wasn't really impressed. Very clinical in the way she spoke, same exam everytime, only difference was the time it took me to walk down the hall eg. took 2 seconds longer this visit. My husband and I would joke about whether we could mess up the seemingly robotic visit-never happened!

Now as it turned out, I was extremely blessed to get into Dr. Anthony Feinstein @ Sunnybrook. I can't begin to say what a difference his approach to me was, actually left feeling like he knew I was human. Dr. Feinstein is a well known neuropsychiatrist; major research on depression in people with MS; deals with my cognitive issues which I find more difficult to deal with than the physical. He also teaches at Univ. of Toronto and lectures all over the world. I cannot articulate how extremely blessed I feel to have him as part of my health care team. Refers me to all kinds of programs to help with my many symptoms.

I was also able to get a referral to see the dr. I refer to as my Gen. Prac. Neurologist, he actually smiles, talks and listens, go figure! My first visit involved a 2 hour assessment with an intern and then a 1/2 hr. consult with Dr. Lee. Unbelievable!!

I have also bee asked to articipate in 3 studies for conitive issues.

The real jewel of my health care is our new family doctor. Extremely kind, caring and respectful. I was so worried when my family doctor of 14 yrs. abruptly retired. She died about a year later due to cancer. I knew that Dr, Rahman and I were going to have a wonderful relationship when he said to me, shortly after taking our family on as his patients. "Sherry I don't know alot about MS but, we will learn together.." I can't ask for more than that and his has been true to his word and, I'm so very happy to have him as part of my care team.

Born in Chatham and spent my whole life trying to escape. Left for college at 18 and never came back except for family visits. Finally made it to Toronto after getting married. For the first time, I felt I was home, The city is so alive, diverse cultures, the theatre, the Blue Jays, we bought season tickets in 1983 the year we were married. Our families literally lived 2min. from each other and we went to the same high school but, being an "older man" we didn't hang out with th same crowd. He knew who I was long before we actually met. We started dating the summer of 1977. I was heading to college in Windsor and he was going into his 3rd year at Western Univ. in London. we only lived in the same city one year in the 6 yrs we dated. I was finishing my last year and he was starting the first toward his 3rd degree. Alot of travelling on the weekends.

We celerated our 26th wedding anniversary this week add that to the 6 years of dating and we've been together 32 years!! I can't figure that out, I'm too young to have spent 32 years with one man!!! We were married 10 years when we were blessed with our first son and 22 mos later we had a second son I think God knew we were going to need them.

After the birth of 2nd boy we had to move and it eas too expesive to buy in T.O. so, I;m back where i started! Oshawa is just a bigger Chatham! The good thing is I can be in T.O. in 1/2 hr. Always up for a road trip!

I will stop for now. look forward to getting to know some of you.

Warm regards,
SherryO


*** Moderator's note - line spacing added to enhance readability. Many members have difficulty with large blocks of text. ***

[laurakim]

becoming progressive

Hi Nolleez,
Secondary progressive ms is characterized by a more steady progression of symptoms and disability and fewer or no relapses. For me, I can mark the exact moment of the beginning of my 'slide'. Going for a walk, I noticed my foot making a curious slapping noise. This was the beginning of weakness in both legs. I continued to have occasional relapses which steroids didn't help as they once had, not uncommon. It's a different road for everybody, I know SPMSers who are still on their feet, walking without aid, after many years. Some people with many lesions have relatively little progression/debilitywhile others, like me, have non-definitive MRIs and more debility piling up. An MRI won't point out the transition to SPMS but can be a good baseline for comparison when taking meds. Listen to your body! You know you best. If you feel you should see a neuro, please do. Take care of yourself, Laurakim

[nolleez]

Thanks Laurakim. I think I'll ask for a referral to a neurologist at my yearly physical next week. How do they know if the disease has progressed? An MRI?
This is so daunting... but my body is demanding I start looking after it.

[laurakim]

SPMS

Hi Nolleez,
I'm from Edmonton. I've had MS since 92, progressive since 2000. Personally, I think it's never too late to try and slow the progression. I have to feel I'm proactive in fighting this thing. I'm presently taking Imuran, thinking of switching to LDN.
Be well, Laurakim

[nolleez]

New Member in Newmarket, ON

Hello,
I have been living with MS since 1996. Was on Copaxone for 2 years until I decided it was too painful (at the time, I would get injection site swelling due to my ultra sensitive skin) Silly, I know, and now, at 36, I'm starting to realize that perhaps it wasn't the best decision . I haven't seen a neurologist in a decade and my symptoms have worsened (numbness now affecting multiple areas, muscle cramps, cognitive issues etc) Would it make a difference if I went back on medication? All I have read tells me that it seems to work best BEFORE the disease has progressed (from RRMS to what I think now may be SPMS). Please excuse me if this has been answered. I have taken the 'denial' approach to the disease and am only now realizing what an idiot I've been. *smacks forehead*
Anyway, nice to see fellow Canadians here.

[PreciousOne]

New Member living in Ajax

Nice to see so many people in Canada on this website. Have had RRMS since 1998 and been doing very well up until this past year, had 2 relapses since Jan 2009, before that it was once a year. I have been on Avonex all this time and my neuro wants me to make a change to Rebif. Talked to alot of people and they say not to because you could get worse. I don't know, any thoughts from anyone...this is all very confusing again..

[harleychicky]

new member

Hello, I am originaly from NB but am leaving in NS. Just been diagnosed in Feb with benign MS..Am on Rebif..I am thinking to try if I can get LDN..Read on it and quit impressive..

Later: