Calling all Canadians

[The Wonderer]

Sick and tired of being sick and tired

OK no diagnosis of being sick but tired all the time. A couple of episodes with balance problems and constant muscle twitches.

The waiting is the hardest part. 1 year wait to see neurologist. He ordered an MRI but one month later no call yet. Sometimes it sucks having to wait in line. Oh well at least health care is paid for by our taxes.

It still sucks though.

Sorry, just had to vent!

[venice]

More Canadian content

Another Canadian, from Toronto. I do wish more of the discussions were relevant to us, in terms of resources and the health care system.

I also wouldn't mind sharing thoughts on our MS clinics and neurologists -- it is a small community, that, so it is harder to talk about more openly and requires a bit more in the way of discretion.

Not sure I have any answers ... just throwing up some thoughts.

[lharalampopoulos]

Seeking information on LDN for progressive MS

Hello,

I just read the book Honest Medecine by Julie Schopick and the information on LDN(low dose naltrexone) sounds extremely promising for progressive MS.

I called a pharmacy in Toronto that carries the drug, which is extremely cheap because big pharma does not have a patent on it, and the pharmacist told they have been selling a lot of it lately. She referred me to the LDN website for more information and it sounds very effective and the bonus is that the only side affect is vivid dreams and a deeper sleep.

Has anyone tried it?

Warm regards,

Kris from TO

[hunterdog]

Where are all the Canadians.................

I am from Calgary. There are a few Canadians on her but mostly Americans. Surprising because Canada has the highest rates of MS so there are a lot of us out there. I notice on chat discussions mostly centre on US health system and insurance. Not much information for Canadians

Hey - Yes Canada has highest MS rate; we all seem to know someone who's been diagnosed with MS! Prior to receiving my dx, I personally know three others who've been dx'ed.

Agree, most of the active members are from USA; thus reading post(s), as helpful as they are, mostly refer to USA medical.

Finding resources in Canada can be a challenge within itself. Most places I call prefer to pass the buck to another organization. The way I've been spoken to, makes me feel like MS was just discovered, and I'm the first patient asking for advice/guidance!

Gotta stick with it!

[NRJ]

Hi from Calgary

I am from Calgary. There are a few Canadians on her but mostly Americans. Surprising because Canada has the highest rates of MS so there are a lot of us out there. I notice on chat discussions mostly centre on US health system and insurance. Not much information for Canadians

[Tapdancer]

Reliable Canadian mail order pharmacy

I am in the US, unable to afford provigil here. Can any of you recommend a safe, reliable mail order pharmacy (Canadian)? I have used PharmaWeb, but would like to try another. Thanks so much!

[shararch]

North Western Ontario

Hi There! I am in a tiny town in north western Ontario...5 hours from Winnipeg, Manitoba & 4 hours from Thunder Bay. Those are the two closest centres with MS Clinics and neurologists.

[truestory]

Toronto...

Hey there....

Finally a place to talk about stuff close to home. There are many posts about treatments and drugs that don't apply to us, so it's nice to see some relevance.

I was diagnosed at the beginning of September this year. Although, my symptoms have been around since 2002. I've read some posts about how to determine the prognosis for PPMS and are disappointed to hear there is none. It really is scary to think we have no treatment and no drugs either. Lots for RRMS...not so much for PPMS.

My symptoms have been progressing fairly rapidly since April this year. I worked hard this week so today is a "recovery" day. This is the hardest day so far! Extreme fatigue, sore legs and arms....not to mention the weak legs that buckle under me while walking. It's been a real thrill.

Unfortunately, I've had to use my Accessibility Parking Permit a few times this week. I always feel guilty for doing that because, as we know, it's not a "visible" disability at times and I don't always need it.

I don't know what the future or progression will be, but it scares me to think where I am now and where this could lead next year....

[artfan]

West Nipissing Area

Hello everyone!

Just wondering if there is anyone from the West Nipissing area of Northern Ontario...Please advise.

[misslux]

Hi and welcome.

I have been to one support group and it was awesome. Go! It isn't really formal like a 12-step or anything and you'll meet people who understand.

Contact the MS Society and go to any educational events. You'll meet people there too.

[Anneke]

From Calgary

Hi Every one,

My name is Anneke (or Ann which is easier), I am only 48 and I live in Calgary. My biggest hobbies are: reading, cooking/baking and meeting people.

I was formally diagnosed with MS this January. My first serious symptoms started in 2011, problems with my bladder function, fell a sleep at work, balancing problems, back pain. Those symptoms did not ring any bells but caused enough problems to loose my job.

In 2012, I lost eyesight on one eye (which is better now, phew), this was the first "real" MS lesion and in January they noticed other spots as well in my back.

I find it very hard to be at home and some times feel very lonely. We immigrated from The Netherlands 10 yrs ago and all the kids are grown ups (well supposedly ) so I am home alone a lot.

My symptoms have worsened a lot, I have a lot of trouble walking, pain in both my legs and my back. Nut I am otherwise fine

I spend my good hours (which are not too many at this point) with my family: husband and 4 kids, plus 2 dogs and 2 cats and I am starting a new foundation called Meaningful Meals.

My psychologist at the Optimus Program would like me to go to one of the MS groups and meet other MS'ers but I am a bit apprehensive, I'd rather meet people in a less formal manner.
Does any of you have experience with these type of groups?

Well, that was a hole lot about me hope to meet other Canadian/Calgarians here!

[canadiankait]

Hello there from North Bay! My name is Kait and I am 22 years old in the process of getting diagnosed. From the looks of many people's stories I've gotten pretty lucky after my diagnosis of optic neuritis in June as my doctor decided to pick me up as a patient after seeing me in emerg (previously I had had no doctor for about 4-5 years). Since then I've had 2 MRI's showing active lesions in the head and neck and I'm currently being sent away to an MS specific neurologist, once they set me up an appointment. My doctor seems pretty confident in my diagnosis and after what he's calling a flare up I've been put on high dose steroids. Hopefully things can get moving along but I'm feeling very lucky with how this whole process has turned out.

[canadiankait]

Hello there from North Bay! My name is Kait and I am 22 years old in the process of getting diagnosed. From the looks of many people's stories I've gotten pretty lucky after my diagnosis of optic neuritis in June as my doctor decided to pick me up as a patient after seeing me in emerg (previously I had had no doctor for about 4-5 years). Since then I've had 2 MRI's showing active lesions in the head and neck and I'm currently being sent away to an MS specific neurologist, once they set me up an appointment. My doctor seems pretty confident in my diagnosis and after what he's calling a flare up I've been put on high dose steroids. Hopefully things can get moving along but I'm feeling very lucky with how this whole process has turned out.

[Surlysomething]

Hey, what's up, Canada?

[misslux]

The gentleman I saw made me feel like I was a doctor-, diagnosis-chasing lunatic :-P. Plus the clinic was SO unorganized and unprofessional -- the receptionist actually rolled her eyes behind this neuro's back when he was being particularly unorganized. I was left with the words, "It's not ms. If it's not ms, it's not our department." (i.e. we're done). Two of the other neuros I observed there seemed VERY good, however, so it's not the whole clinic, and perhaps it was just a Very Bad Day at the office :-).

Thankfully, I had one more referral, and used it -- I was seen in Kingston yesterday. I had many more neuro tests than they did at St. Mike's (in 1/4 of the time!). He is bringing me back for a whole day of tests, because "although your mri doesn't look like ms, there's something definitely wrong and we need to figure it out."

Night and day experiences between two ms specialists, for sure. I didn't even want to go yesterday; I was done after the last appointment. So glad my family doctor convinced me to give it one last try.

So sorry you had a bad experience at St. Mike's. Mine has been the opposite -- professional, caring, etc. from everyone involved.

Having said that, I am glad you found a place that you are comfortable with and like!