Mayo or Cleveland Clinic?

[jumpinjiminy]

After doing a little thinking on this prednisone thing, it seems to me it might be a better option to go to a specialty clinic that runs all the tests in a week rather than piecemeal this thing together as my GP likes to refer to it.

I follow up with him next week after visiting the neuroimmuno, who ran two antibody tests and said come back in six weeks and follow up by phone in two or three to let him know how the new medications are working.

My question is: between the two, which is the better choice? One doc tells me that Cleveland Clinic has the better, more specialized immunology group, whereas Mayo has the better more specialized neurology group.

Since my symptoms are both and looking systemic rather than just neuro, I'm torn over which way to go. But I want this diagnosed and treated properly asap, so I don't end up ruining my bones while I wait for it to dribble through in bits and pieces every six weeks or so. This could go on for a couple of years.

How to choose? I've read both their websites, looked at all the docs, and still am having a hard time deciding. Mayo is closer, but CC sounds like they might be the better option for finding a seronegative autoimmune process.

[Redwings]

But I want this diagnosed and treated properly asap, so I don't end up ruining my bones while I wait for it to dribble through in bits and pieces every six weeks or so. This could go on for a couple of years.

Hi jj:
I don't have a recommendation about which clinic to choose. But as someone who's been at this autoimmune game for more than 20 years, I'd like to offer some perspective about what you might expect.

If you're lucky, there will be a quick ID and a quick fix for what's ailing you. But there might not be, and the treatment process might go on for another couple years anyway. At a minimum, if things follow a customary course, it will take weeks (as in months) for you to taper off of your steroids. It's the situation you and your GP bought into when he put you on a hefty dose of prednisone with no diagnosis and no end in sight. It was like going to war without an exit strategy.

And it may take weeks to ramp up on an immunosuppressant -- 4 to 6 weeks at a time, just as you're doing now with testing a migraine med as part of a differential diagnosis. If you're lucky, you'll do well with your first med and won't have to change because of side effects and start the process all over again. There are some things that just can't be sped up.

As an example, Just in the last 10 years, I've been on 12 different meds. For two of them, I've been on 2 different forms. That includes going back on oral prednisone last year and starting injectible methotrexate just last week after having intolerable side effects from the oral form last year. And I've run out of immunosuppressants I can take. Plus, my docs want me to go on at least two more meds to counter the side effects of other meds I've been on, and incur even more side effects, possibly culminating in having to discontinue them later as well.

That certainly doesn't mean that you'll have nearly as much trouble as I have. But it's healthy to be respectful of the kinds of things that could happen. So if and when things go well for you, you'll have a good perspective of the possibilities and be really happy about how things turned out. I really hope that's the way it goes for you.

[hosborne2000]

I currently go to the Mellen Center at the Cleveland Clinic, and I have been TOTALLY pleased with everything there. I was with a different insurance when I was diagnosed that did not allow me to go to the CC, and it was terrible. I love that all of the neurologists and nurses at the center only see MS patients and that MS is their only focus. I would highly recommend the Mellen Center at the CC.

[hunterd]

i`ve been to the mellon center too, and recommend it. they treated me well and with respect, and the drs listened and asked. it was a good expierience and i advocate the choice. i`ve never been to mayo, so i can`t comment on thier bedside manners. good luck.

dave