Calling all Canadians

[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

[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]

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

[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]

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 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

[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.

[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]

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...

[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

[missms2009]

Hi
I was told that I have MS May 2009. I am taking Rebif, STILL not use to it, will I ever be... , i haven't met anyone with MS yet. I live in Woodstock, near London.

[FLAW45]

I'm Canadian

Hi There

I was diagnosed with PPMS in Oct 08. The last year has been a real drag. Was told there was nothing I can do for PPMS. Would like to try LDN though. Will have to wait and see at next neuro appt in November.

Fiona

[clark49]

HI THERE

I HAVE LOOKED ON MANY FORUMS FOR PEOPLE WITH PPMS!THERE ISN'T MANY OF US!WE'RE SPECIAL!MY WAY OF LOOKING AT THINGS.EMAIL ME WHEN YOU HAVE TIME.

[Oggel]

Hi from Markham, ON

Hi Folks,

Like Kid1971, I too found out I had lesions on my spine accidently. I had an MRI done cause my arm is numb and it was suspected that I had a neck injury. I do! That was approximately 1 1/2 years ago. my neuro sent me for a brain MRI and guess what, found lesions there too. ****, that was a total shock!

I was having other symptoms too but she said that in her opinion she felt I have MS but could not give me a definite (clinical) diagnosis until I have an attack.....Incredibly frustrating to say the least.

Well, in August I lost my vision in my left eye and both eyes were aching like crazy. My neuro was on holidays. Anyway, long story short, she sent me to see Dr. Paul O'Connor at St. Mikes, he did an evoke potential and determined there was imflammation to the optic nerve and diagnosed me with RRMS.

I went back to my neuro the next day, she perscribed prednisone; 50 mg. for a week and ageed with the diagnosis. So, currently I am always exhausted but trying to work, plus I have many other symptoms as well.

My neuro perscribed modafinil; 100 mg's to help combat the exhaustion. she gave me dvd's and literature on the five modifying therapies available in Canada and asked me to research them and decide which one I think would be best suited to me. I think I will start this treatment in January 2010, unless I have a relapse before then. I am seriously looking at Rebif....What are your thoughts and experience with this med?

I live in the York East chapter of the MS Society of Canada and it appears that there is not much happening here. I think I would really benefit from a support group at this stage. Is there anyone out there who also resides in this area? If so, any suggestions of where to go?

I am hopeful and I wish all of you a wonderful Thanksgiving.

Oggel

[Oggel]

Hi,

I'm living in Markham, a little south of you.

I am newly dx and am currently researching DMD's to determine which on will fit into my daily routine of life.
I have a neuro appt. in Jan and will most likely start then.

I've been reading posts of peoples' personal experiences with side effects. I am concerned about that. I am still working and my job is very demanding. Has anyone had to take time off work due to side effects from Ribif or any of the other Beta Interferon meds?

I am so glad this site is available. Now I don't feel so alone with this.

Please excuse me if I have posted more than once. I am still trying to navigate my way around here.

Kinda like learning how to drive on a highway with so many exits to take. LOL!

Cheers,
Oggel