Aa
Aa
A
A
A
Close
Avatar universal

To Mayo or not to Mayo

Ok - so short backstory is that I had to go to mayo for another illness (the one that inadvertently lead to the finding of ms later) and it was helpful in regards to diagnosis and they found a drug interaction my docs missed. (Eight specialists do have a hard time coordinating communication the way out health systems work.)

The follow up was awful.  After I got home they called to tell me that the meds aren't working and to increase the dose.  Two weeks later again meds not working (blood test results) and their plan of action was "You need to find a specialist In your area.  Good bye."  Those specialists are rare.  I was pissed.  I finally called and complained that they lied to me about their "team approach" when they won't even consult with their own huge pile of doctors and leave patients out to dry.  I guess that caused some ruckus on their end because all of a sudden they wanted to see me right away etc.  

In the meantime I found my own doc nearby (the specialist who btw hates Mayo) and I started the hunt for a neurologist that I felt I could trust.  Was seen at Barnes Jewish MS clinic.  

So niw have appts at mayo to see neuro, and MS neuro, and infectious disease, and pulmonology and psychiatry.  I'm wondering if I should see neuropsychology too there.  They are good diagnosticians right?  I don't trust them for good aftercare but I do think they have the data and experience that are only found there.  I can't get neuro and Inf disease, and pulmo, and psychiatrist to communicate here.  They don't have a system for it.  I'm on some major meds for infectious disease.  I want to make sure that the ms meds and all the other things - anti depressants and infection meds - and anxiety meds all work correctly and won't destroy my liver.  

That leads me to think I should go to mayo.  The travel is a cost that will be hard but what do you guys think?  I've heard good and bad.  If I do go to mayo who should I NOT see?   (For MS that is.).  Or who do you think I should see?  Or should I cancel.  I'd love your advice.  Thanks!
6 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I don't think you need a second opinion regarding MS. For better or worse, it's in the bag :-(

For medication coordination, an excellent source is your pharmacist. He or she will be willing to research all your meds thoroughly to find interactions, etc. After all, it's what they do, much more so than MDs do. Unless you live in a total backwater with 4th rate everything, pharmacists are a wealth of info. Your pharm. very likely will not be handling your MS med, though, because this is generally filled and managed by a specialty pharmacy, per your insurance. However, this would give you one more place to run everything by, and that's a good thing.

If you don't absolutely have to go to Mayo, why go and spend money you don't really have? It's not as if they'll be treating you, at least I think not. On this forum, Mayo gets a big two cheers.... A lot of times hotshot places are
really impressed by their own reputations, and so are 'raters' such as US News and World Report. I've found that to be true about Hopkins, which is huge and bureaucracy-bound, though regarding MS care I can't complain. And I have only to drive downtown to get there.

BTW, you are not 'old' in MS terms. I was past 60 when diagnosed. Although this is fairly unusual, it certainly happens, and there is good research data to show this. We get people here whose neuros tell them they're too old for MS. Hah, red flag to find a better doctor.

ess




Helpful - 1
Avatar universal
Ps Alex,

I get it - Mayo has disappointed me in the past non-related to ms.
Helpful - 1
667078 tn?1316000935
We have a joke around here for MS "Hold the Mayo". Many people on the forum have not had success being diagnosed at the Mayo. May be you would have better luck, I don't know.

Alex
Helpful - 1
Avatar universal
Local Universities are much better than Mayo.  Mayo is too greedy.  
Helpful - 0
1831849 tn?1383228392
I'm not sure I would go out of my way to be annoyed/frustrated :-) There must be first rate MS care available in St. Louis.

As to age, I was 51 when I was diagnosed. And I'm a guy! two reasons I would have been misdiagnosed by unknowing non-MS specialists.

Kyle
Helpful - 0
Avatar universal
Thanks Alex

I already have the diagnosis.  I would only go for:

1.  Second opinion
2.  Medication coordination between several specialties

Do you think that it's worth it for that?  How do I get my several specialists (in 4 different systems) to collaborate at home?   I'm having some difficulty with that.
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease