Horrid story

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Lyon » Fri Sep 15, 2006 2:01 pm

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Postby bromley » Fri Sep 15, 2006 2:04 pm

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Postby Lyon » Fri Sep 15, 2006 2:10 pm

oo
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Postby robbie » Fri Sep 15, 2006 6:20 pm

thx for the help and info rob
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Postby Lyon » Thu Nov 09, 2006 7:44 pm

oo
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Postby JFH » Fri Nov 10, 2006 4:09 am

bromley wrote:... I should get my first infusion at the end of November. ...


Good luck with that Ian.
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Postby Melody » Fri Nov 10, 2006 5:32 am

robbie wrote:I was just wondering if your severity of ms has an affect on your neurologist’s decision to get you involved in some of these therapies. I know when I was in better shape my neurologist wouldn’t even think of these therapies. Do I have the last word in how I want to treat my ms or does my neuro have the last say in what I can try. i read all of these different treatments and all the people that are being helped and wonder why can't this be me, it would be so eaisy to miss the boat!



Robbie you need to go into your neuro like "YOU ARE IN CONTROL". If your neuro doesn't support your decisions try another one. Dr. Lee at Sunnybrooke is great. You need to go armed with the paperwork for what you are interested in and what little science there is to back it up. You need to tell them WITH CONFIDENCE the interest you are taking in your health and then you need to know if they are with you or against you. Even our family Dr. took some work but once I started ordering test through the labs and by passing him he realized NO was not an OPTION when I asked him to check something for us. John was more timid at first as he was taught the Doctor knows best. I come from a family disinterested in a Dr. telling me what's up in 1/2 hour visit when I live in my body 24-7. I know whats up he only knows what I'm able to communicate to him. End of story take Control be FIRM and No is not an option. :wink:
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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good one!

Postby jimmylegs » Fri Nov 10, 2006 3:12 pm

you ROCK mel i totally agree with what you're saying. how wrong is it for a doc to say no to tests just assuming you don't know what you're talking about! and yea the half hour vs 24/7 thing so right. gtg
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Postby Lyon » Fri Nov 10, 2006 3:45 pm

oo
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Postby robbie » Sat Nov 11, 2006 12:27 pm

Not sure i'm ready to fire my neurologist yet, all these drugs along with their stories "good and bad" it's so confusing to say the least. I admire the courage it must take to commit to one of them...
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Postby Lyon » Sat Nov 11, 2006 12:49 pm

oo
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Another course of action to consider

Postby lyndacarol » Sat Nov 11, 2006 5:14 pm

Robbie, as Lyon said:
Whatever you decide is up to you but don't feel that your only choices are the ones your neuro would agree with. It's too early to say but your best choices might be ones that your neuro wouldn't agree with.


Perhaps for some of us, the method of coping (I hate that word!) is simply to feel we are doing SOMETHING--whether it's reading up on research or books, watching those medical programs on TV, noting events in our own experience, trying diets, supplements, or something else that we are pretty sure will "First, do no harm." The key may be simply DOING what we are able to do.

Those of us without a scientific background are at a disadvantage, but we offer what we can. You can, too. You can think over your experiences and observations. You may find a likely camp here to join--EBV, hormones, helminths, insulin, antibiotics, or a new approach. Then read and research like crazy! YOU may be the one to find the article that makes everything fall into place. Just keep an open mind to any possibility. Prayers can help us all. Best wishes in your endeavor!
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Postby beyondms » Sun Nov 12, 2006 1:52 pm

Robin,

Thank you very much for posting this information. I will discuss Campath with my neurologist even though he was skeptical of its efficacy given the results of some trials.

beyondms

raven wrote:In my case there was no chance of getting a placebo, the trial was not blinded. Also, given the aggressive nature of my MS I was in the unenviable position of acting then or not acting at all.

The interim results give the effectiveness of Campath at 75% which surprised me when they were released. I know of no-one who has been treated who has subsequently relapsed (Those running the trial in the UK were also a little surprised when I discussed it with them).

Not only has my MS completely stabilised but is actually slowly reversing. Stabilisation was my goal, the reversal of my disabilty an unexpected but very welcome bonus.

Given the promising results of treatments in the pipeline, Campath, Rituximab, Tovaxin etc. the future for MS patients is looking much brighter than it was a few short years ago.

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Postby andyc » Thu Aug 23, 2007 9:21 am

Hi, my partner is female, 26, and has just been offered the campath drug trial. she has had 2 attacks in the space of a year. She is worried about the side effects. but surely the long term out weighs the short term?
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