Home from the Mayo Clinic

Well after a week at the Mayo in AZ, they figured out what has been making me sick and well I wasnt surprised or shocked when they said it was MS.   I took two separate sets of MRI films and with in about 30 mins they came back and said that the radiologist was wrong.  Instead of one lesion I had two since last yr.  We are still waiting on the LP results to come in but they said that everything else they ck'd for came back normal or neg for what they were testing for.  And said that it was MS.  So know we know.  They have me a script for some meds to help with the fatigue. 

Because they are over 2,000 miles away suggested I find a neuro i can trust closer to me for monitoring.  They did say that they didnt feel that "MS" meds at this point would help with and that the lesions are stable.  Im just concerned that if i dont get on meds to at least "slow" the progression down that I'll just get worse.  I will talk with the new neuro once my reg dr get it scheduled on my concern.  To me if i can take a med that will slow it down its worth it, than not taking a med and in 6 months a yr have twice as many lesions because i didnt take any meds.    Any advice or thoughts would be appreciated.  Thanks.

The Mayo clinic has done a study some time ago -- I tried to find it on line, but couldn't (probably because I'm not real skilled at that!)

that led them to the conclusion that they, as a matter of practice, won't prescribe one of the CRAB's early in the course of the disease, but rather wait until a larger exacerbation occurs, "justifying" the drug. They looked backwards at a number of patients with MS, those severely impaired, those with only mild impairments.  According to their study, some folks never got significantly worse, never had a large exacerbation, and the cost (physical and financial) of the drug might not have been warranted.

I'm of the belief that the earlier one starts the drugs the better. Why risk a large exacerbation that may leave you with significant disability?  Sure..there's a chance that you won't have such a flare...but is it worth the risk?  Not for me, it isn't.

Note, though, that none of the meds promises to stop ALL exacerbations, or stop ALL progression. It could well be that even if you do start on one of the drugs immediately, you could still, 6 months from now, have new lesions, or have suffered an exacerbation.  All that they're promising is to *reduce* the number of flares.  The Mayo clinic doesn't support that promise.

Indeed, talk this over with your new neuro, but in the end, it really should be you who makes the choice. Good luck!

whtedragons78 said...
My gut feeling is to start meds as soon as i get a new neuro. I too feel that why wait until another lesion appears. Haven't we all been told early detection is the key in most diseases anyhow. Im also think they might not want to start me is because im 2,000 miles away and they wouldnt be able to monitor or change the meds as easily. Of course that part is just speculation on my part. lol But I am deffinately going to be talking to the new neuro about meds. Thanks for ya'lls input i appreciate it ver much.

Any neuro can monitor or change the meds. For that matter, it's my regular family practioner who monitors me, and who I would go to, to change meds, if I thought (or she thought) it necessary.

Good luck with your new doc!