I've asked myself the same thing. I would love to work with an expert but I do not think they will tell me anything different than my doctor here (and what I learned at the TMA conference) taught me.

Perhaps talk to your doctor about it and see what they think. Most doctors are very comfortable with a second opinion.

Roxanna, I have never been to Mayo Clinic. I believe in finding good local doctors that know what they are doing. I know some people swear by the big hospitals and that is fine. I think my local doctors are world class!

I know you are a nurse. If you believe that there is a special procedure that you need and only Mayo can offer it then it would be worth the trip. I would need a special reason to spend the money. You could discuss how your long-term care would be handled before going to the clinic. The main thing is what happens when you leave and are the meds any different?

Make some phone calls to the clinic. Find out the costs. Be specific with a plan. Compare the doctors with the ones you currently visit.

Keep us posted.

Hey Roxan,

I like on the East Coast USA in New Jersey, there is an amazing clinic here in USA in Baltimore Maryland. Called the John Hopkins Myositis Clinic.

I worked with Dr. Lisa Christopher Stine. They took all my information and put it together and basically certified that I def have DM, which I already knew, looked at all my lab tests and saw what my doc did in the past and gave her directions on where to go.

Since the Hopkins visit, I have restarted IVIG and my CK is now the lowest it has ever been 582.

They continue to work with me and are giving me a personlized chart system so I can work directly with Dr. Lisa w/o having to frequently go there.

They also told me they have done studies there using DNA and our blood to be able to tell us if we are more susceptible to ILD, lung disease from the DM. I really was encouraged going to the Myo clinic At John Hopkins and if you can make it out there I totally would recommend it.

Mike

My neurologist had voiced that maybe I should go to the Mayo clinic. For what? What can they do fo rme that they can't? What test can they order? I am sick of expensive bills, even after the insurance discounts. I also have started taper my prednisone again. i am going down 1 mg per day. Left up to me, I would have stopped taking them at once. I am beginning to realize that we are a money making machine for doctors who have us coming back over and over each month or every few weeks, knowing that there really isn't anything that they can do for us. I am always getting bills from third party providers who bill under the incorrect provider ID or who do not send in the requested info. Or I get my wonderful percentage that I now have to pay. Mayo clinic is probably a great place, but since I have a diagnosis that is not curable, why spend the extra money that will also include transportation and housing cost while I am there.

I too have done research and was wondering about the myositis clinic in Baltimore Maryland. My reason would be that I have had DM for almost 1 yr.(diagnosed) on mtx 30 mg, 5 mg pred. and still having night sweats. However, swallowing much better.
My rheum. says that I have overlap disease. He also feels while the mtx is controlling some of my symptoms, it is also bringing other autoimmune diseases to the forefront. Looking like RA, lupus?, he is not sure.
I was wondering if Mayo could offer any opinion as to DM and what else might I have. For every symptom that has gotten better, I am still pretty fragile.
Sorry, wish I could be more help.

Hi Roxannak. Don't live in America so know nothing about the clinic you want to visit. Getting down to 5 mgs of Pred is great but if you are feeling weak it may be best to see your local Rheumatologist now. I too am down to 5mgs. I have muscle and joint pain and feel really miserable for the first week or ten days of the taper. This is not a flare its just withdrawal symptoms from the steriod. If I felt weak or my swallowing changed I would call my Rheumatologist as this may be start of flare and should be hit soon, hard and aggressively. Best wishes to you. Autumm

I invested a week last december at the renowned Mayo Clinic in MN, and it resulted in no diagnosis and more "we don't know what's causing your muscle weakness". I found it to be very frustrating, but that was my own experience.
Tricia

They are supposed to be one of the best facilities for mysoitis in the country. I thought about going there but ran into insurance issues. I went to the University of Iowa Hospitals instead and I am glad I did. it turns out my old rheumatologist was kind of messed up. He wasn't following the regular protocol and I am doing much better now. I would want to thave a pretty definite idea of what I wanted as an outcome and an idea that things currently weren't right before I would invest a bunch of money in going to Mayo.

Thanks you everyone who replied to this post! Very much appreciated and you have confirmed what I think. My general practitioner is my co-ordinator and she works nicely with me. If I want something she does it and I make sure all my results go to her. My CK is about 90. It has been creeping up bit by bit since I started the prednisone taper but is still good. I am thinking my changes are due to the taper and withdrawal from prednisone not a flare as the bloodwork is good. Had some done yesterday and my GP called me at home to tell me everything was good. I am very lucky to have great rapor with some of my docs and they call me at home, they don't get paid for phone call by the way! My general surgeon call me at home as well with the results from my chest CT scans! She called me at the lake last summer too. I consider myself blessed that way.
My rheumatologist is pretty good and from what I have read here appears to be up on the treatment of DM and I am satisfied with her as well. She could do her summary letters a bit better but that is something I will have to request from her!! :)
Thanks for the input and unless I start to deteriorate and feel that I am not being cared for here in good old Saskatchewan I think I will keep plugging along.
As an aside I am one of the very lucky ones. I have been off work since last May when I was diagnosed and will be off until September of 2014 when I think I may try to go back to work! We'll see what the next year brings.
Enjoy the last week of July, hope everyone has the weather they like and time to enjoy it!
talk soon
Roxanna :)
May look into going to the TNA conference!

Hi Roxannak. Just watch the labs. My Rheumatologist tells me he can spot a flare from the labs about three weeks before I notice anything. Hope all goes well for you. Autumm