[catie]

Hi!
My neurologist has suggested going to Mayo for an evaluation. Has anyone been to any of their facilities? If so, what was your experience?

A little background on my situation. I'm not diagnosed w/MG, but have been on Mestinon for about 2 months. It has mildly helped my double vision, although symptoms of arm/leg weakness have resurfaced. I had testing a number of years ago when symptoms started. At that time test results were all negative, although clinical symptoms pointed to MG. Neuro is reluctant to proceed further with treatment options until a definitive diagnosis is established.

Being seen by an MG specialist would require traveling and the neuro felt Mayo was the top place to go. Any thoughts?

Cate

[AnnieB3]

Cate, Do you want info from a patient's perspective or what doctors "might" think, now and in the future?

Once you've been to Mayo, you'll be "a patient who has been to Mayo."

If the Mayo neurologists proclaim that you're fine, and you're not, no one will dare oppose their opinion. Well, there are probably a few neuros who would.

Mayo doctors don't think outside the box and are very rigid in their diagnostic techniques. That can be either good or bad. The doctors who do the SFEMG's are "learning" how to.

It can be expensive to go there, mostly due to the air fare, hotel and food costs. They may not have your appts. scheduled in a few days. Sometimes you can be there a week.

If you can find an expert in your area, that would be better. It wouldn't cost as much and you need someone to follow your care anyway. Can you post where you're from, in case someone knows of a neuro close by?

You can look at the MDA's website to find a neurologist/MG expert.

Mestinon doesn't necessarily help with double vision. Depends on how bad your MG is or what "type" it is. They're starting to realize that there are "subsets" of MG like people who mainly have bulbar symptoms.

What tests were done for you?

I won't go into my experiences there because it was so horrid and I don't want to color what you do. Erin had a good experience. There's no way to predict what kind of experience you will have. Which Mayo would he send you to? There are three: Minnesota, Florida and Arizona.

Whatever you decide, I hope you get some concrete answers.

Annie

[catie]

Annie,
Thanks so much for your reply. Yes, I very much want a patient's perspective. I've had my own horrid experiences with "experts" and realize how difficult it is to get an unbiased evaluation after that. And I do have reservations that Mayo could be a repeat nightmare.

I've had most of the diagnostic tests a number of years ago, but the neuro who follows me now feels it would be beneficial to repeat them. They are looking at the Mayo in Arizona.

So what does one do? The MG expert in my area is not an option, so if I'm evaluated again I do need to travel. I will check out the MDA website. That may prove to be helpful.

Cate

[BillF]

I have been there (MN) twice. Both times I had mixed results. The first time I was in fair control of MG, the second time right after plamsapheresis and huge doses of prednisone, when I was going into remission. So maybe they didn't have much to work with. The first time they recommended going off of the immunosuppressants - this was good and I felt better. The second time they told me after a muscle biopsy, that I had an odd type of MD which is usually progressive. Who really knows. I think that difficult cases remain difficult and that the same conditions that confuse local docs also confuse Mayo.

It cost a lot but there was some benefit. I don't think I have MD and I think I am in remission from chemically induced MG. One of my neuros agrees and the other is unsure. Bottom line is that I am doing fine right now and even reinvented myself after I got better after almost dying several times from drug complications, line infections, shock etc., losing my wife of 37 years and shifting everything I had known in my life.

Bill

[AnnieB3]

Bill, I am so sorry you have been through so much. My heart goes out to you. I've had those brushes with death too and they are hard to deal with. That was a nice, honest reply you gave about Mayo. I hope things get better for you.

Cate, What does one do? Proceed with caution. Sometimes there are experts at Universities or places you may not expect. Call around and see who is in your area. If you can't get anyone, you may have to roll the dice and go to Mayo. You deserve to have the best care possible.

Annie

[dog lover]

Bill,
Your story is very touching. When you say you reinvented yourself are you referring to coming off the immunosuppressants? I sooo want to give that a try but I know my Neuro won't be on board with that. I am sure 90% of my problems are med related. It is so frustrating because everytime I tell the dr about a side effect they just give me another pill or two. I feel like I am fighting a losing battle. I am seriously considering meeting with a nutritionist and trying more of a holistic approach. I won't make any changes without talking to my neuro but definitely think it is time to try some new things. I would love to hear how long it took you to get off the meds and how quickly you started feeling better. I know sometimes there is no choice but to take medications but at this point I think my body is being poisoned by the high doses of so many different things.
Kendra

[catie]

Bill, Thanks for your response. It really helps to hear from people who have been there for an evaluation. Good or bad, I want to hear it. And I'm so glad that you are doing well now.

Annie, yes I agree with you about proceeding w/caution. I have always been a self advocate and that has occasionally resulted in a tense relationship with a few of the specialists I've seen. I now have a PCP who is supportive and will coordinate the referrals and personally follow up with the specialists I see. I am planning on being evaluated at a smaller facility and am hopeful that I get the answers I need.
Cate