Life with MS & EDS

January 7, 2009

To Wait or Not to Wait…

Filed under: Uncategorized — by mseds @ 1:04 pm
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I just got back from the neurology visit. He confirmed was I already expected, although it was the first time he said “you have MS.” The blood tests ruled out Lupus, Lyme, and Sjogren’s Syndrome. My sed rate (Erythrocyte sedimentation rate or ESR), which measures inflammation, was just out of normal range at 36. So, it doesn’t look like there is anything else I can blame for the optic neuritis or white matter besides MS.

We talked about the various medications and I explained why I was leaning towards Copaxone. He did say that the interferon companies will say that it isn’t as effective as their medications, but that there is long-term data (mainly from Israel where it was developed and in use sooner) showing that Copaxone is effective. It was FDA approved in 1996 and its track record here looks good.

We (my husband came with me) asked how we’ll know if it’s working and the doctor admitted that we won’t really, at least not for a long time. He reminded us that starting medication won’t get rid of this instance of optic neuritis, but that it could delay another relapse of it. I guess we’ll know next October (that’s when it’s come on every year since 2001.) He also said we’ll monitor the white matter on the MRIs each year. If I develop any new symptoms, he may want an MRI sooner.

All of this is so very vague. It is reassuring that tons of research is being done. Hopefully one day someone will be able to explain MS better. Right now the goal is obviously to stop relapses and to keep the progression rate as slow as it has been for as long as possible.

I let him know that I have an appointment at Penn in early March. Then he gave me the option of waiting until then to start medication, saying that perhaps the specialist has a drug preference or knows of some new research that would point in one direction or another. The idea of waiting was quite intriguing! I’m not exactly rushing to start on shots, I must admit. I asked about any disadvantages of waiting another month or so (I’ve already waited 5 years) and he admitted there aren’t any since this is really treatment for the long haul. Then I asked about any advantages. He said I’d have that time to know if I can deal with Copaxone’s side effects and could then reevaluate in March, if needed. Humm, that is something worth considering.

He faxed something over to the Shared Solutions folks that provide the training and support for Copaxone. Someone from there should be calling me soon. He also gave me the prescription.

I guess I may as well get started and see how things go. I’m kind of dreading their call, but I can’t think of a reason not to start now. If anyone else has a suggestion as to why waiting until I see the specialist in March would be a good idea, please let me know!


1 Comment »

  1. […] the neurologist shortly to see if the office has already sent over the new script.  My “to wait or not to wait“  decision is being made for me!  It’s difficult to get all psyched up for something […]

    Pingback by Slow Process « Life with MS & EDS — January 22, 2009 @ 3:31 pm

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