This Is MS Multiple Sclerosis Community: Knowledge & Support

I've been diagnosed with MS since '98...I've had 2 serious exacerbations in that time...the first when I was diagnosed and another one two years ago (2008). I have not taken any drugs to this point. When I was first diagnosed I was 25 and wanted to see how I was without taking drugs. Turns out I've been very fortunate.

However in the last exacerbation (2008) I was told to once again go on Copaxone my husband and I got pregnant with our second child...so I didn't at that time

Just recently I went back to a new doc and he is strongly recommending I go on Copax as well....to quote him "You don't have a quiet disease"

My concern is I have been fine to date...my worry is what the future holds.... and such is MS

Has anyone else struggled with this and if so where did you end up?

Hello Hillrom,
I also was diagnosed in '98; I had already been sick for about 15 yrs, just not a fan of doctors. My diagnosing neuro advised against meds, saying that they have awful side effects, including osteoporosis. He sent me to a naturopathic doc, who advised me about diet, nutrition, allergies. I've never taken disease modifying drugs. I have read in many articles in various ms magazines which said that with this disease, progression is happening even when one is not experiencing exacerbations.
At the beginning I thought I was going to beat this. All went well enough for the first 8 yrs, but things are progressing for sure now. I do have a friend with ms who was avid about taking her meds. A lawyer. Another friend, who worked with her on the county mental health board, told me that she had lost her office. I emailed her to find out what is happening and learned that she is now is an assisted living facility after losing her practice, office, home. So there is no guarantee, no matter what you choose to do.
I wish you the best of luck. And now there is an alternative (CCSVI) to explore. You can read about the people on this site who have had their CCSVI treated. Click on forums. There are several threads on the subject.
Happy Spring.[/list]

I was diagnosed in April 2005, declined Rebif, and took part in a phase III clinical trial from July 07. I'm now struggling to decide what to do. to continue the trial drug, to take LDN or to pursue CCSVI.
I suppose it comes down to deciding what you believe.
I like my neurologist. I respect him as a person.
I find myself feeling like a teenager fighting what he recommends for me (he says stay with the new high-tech immuno-modulator drug). I'm trying to figure out why I don't necessarily trust his judgement. I wonder if this is silly non-technical thinking by me!

This reminds me of a line in Alice in Wonderland, the recent Movie. The Hatter says: "When you finally have to face this monster, you will be alone."

This darn disease affects each of us so differently and evolves at different speeds and manifests itself differently in each one of us. I think whatever you decide is a crap shoot. I refused the CRAB drugs and my neuro thought I was out of my mind. I was diagnosed in 2006 and have enrolled in two clinical trials. Neither of these trials have done much for me. I have pretty much decided that I need a fresh look at MS apart from how the mainstream has placed it into this nice tidy little box. My advice is to get as much information about this disease and it's treatment options both fda approved and off-label like LDN. Learn about CCSVI. Decide for yourself which options are most appealing to you then go back to your doctor with your choices narrowed by you. Not by the drug rep of choice that frequents your doctors office. Unbiased information is very hard to come by so take it all in but all the different drugs and treatments try to paint the rosiest of pictures for what is an unpredictable and sometimes very grim disease. Knowledge is power so learn all you can.

Marcia

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Marcia