yes there are alot of us around lookin for answers.hi im vinny and i live in lively ontario 4 hrs north of to.
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Calling all Canadians
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hello,
I live in Idaho U.S. I'm new to m.s. and new to the computer,so please don't think I'm dumb.I was diagnosed a year ago.I have been so frustrated with the u.s. medical community! I was hoping it was better in canada.sounds like we are all in the same boat-wherever we are.this website is like a miracle for me.I know only 2 people with this disease.
God bless you all
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male Canadien ms'er, BC always
after looking at all the posts I have only found 1 outher male so I think I wiil stick to the mens board.
I was dx in 1972 and had an 8 year remission period and then ms reared its ugly head, a very slow progression but bad enuff to make me quet work.
I was a structurel ironworker so having a good balance was essential.
I stopped wo rk in 1980 and have been doing volunteer work ever since, I don't know were I found time to work.
I am not on any ABCF drugs and just doing my best, wife left 6 years ago because she could no longer handle the ms, after 33 years for better or worse is a joke.
I have been on my own since, there are problems once in a while, but they can be solved, the next day everything is fine.
I still drive and walk with a walker in the house and use a scooter outside, my van has a lift so that I can take my scooter with me.
I would like to find some thing to stop the progresion, most drugs have side effects that I don't like, oh well.
good luck to everybody
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Happy Holidays! I haven't been on the board for awhile. Creativity has gotten the better of me. It's my survival. You're invited to check out my brainspace site Brain Angles which was created to show my online art exhibit 'A brain from all angles'. Wishing you all a great 2008! Links disabled for me, so just replace the (dot) with an actual . in the www address below. Hope you'll visit to see my Brain Show.
www(dot)brainangles(dot)zoomshare(dot)com
MichelleEach smile, each laugh, each tear, is a moment lived.
Moments tend to expand when shared.
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Dx but denied DMD's...WHY??
I am from Edmonton and I was first diagnosed with MS in 1993 with an MRI and a spinal tap that showed banding.
I have been in remission until February 2007 when I was diagnosed with Paratrigeminal Neuralgia by Neuro #2. I had to see neuro #2 because I couldn't get in to see Neuro #1 and was having severe pain that needed treatment NOW!
Neuro #2 agreed to treat me as long as I saw no one else (I still don't know why but I agreed). I was "treated" by neuro #2 with I.V. steroids, prednisone, tegretol, topamax, Lyrica, neurontin and still had symptoms of a relapse. I finally had to ask him in Nov. 2007 what was causing all of my problems and he told me under his breath that they were underlying symptoms of MS. By this time I had presented with leg and hand pain, nightly leg spasms (which he felt may be caused by a tumor on my spine but the MRI I paid for came back negative),
neuropathic pain in my feet, difficulty expressing myself, stuttering, paresthesia, and it wasn't until a year after I started seeing dr. #2 and developed severe vertical double vision that he decided that an MRI was in order.
The MRI was done 3 days later and the results were given to me over the phone by his nurse stating that the MRI shows numerous lesions that are indicative of MS. This same nurse advised me then to get a second opinion.
I then began seeing a new neurologist which was the one I had been seeing originally, neurologist #1. This neurologist has stated that she does not feel that these symptoms are due to MS, that she will not be giving me any of the DMD's because I am not have a relapse (according to her) and I do not qualify as the criteria required for coverage for these drugs is that I have two relapses in two years.
I would say that the Paratrigeminal Neuralgia in February qualifies as one relapse and the severe Vertical Double Vision would qualify as the second however she doesn't agree.
I am so frustrated about all of this...I have read so many articles including the ones from the drug makers themselves that states that the sooner these drugs are started the less likely a patient is to have a relapse by slowing the progression of the disease. What would make this neurologist decide that I don't qualify for these drugs that are so important to me. Avonex even states in their information that it is approved for treatment of a single event suggestive of MS to delay the onset and to decrease the number and volume of active brain lesions on MRI.
Anyone out there have any suggestions?
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I live in Barrie too!
Originally posted by littlebelle View PostI am sure there are many out there. I have met a few. So Where in Canada are you from? If you do not want to say that is fine. Just pop in and say Hello.
I think since our insurance issues and medical supplies issues are different from our US friends we should have a place to discuss how our system works. What trials we have going etc.
Looking forward to meeting you all
I live in Barrie Ontario 100 KM from Toronto.
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