Random question: Treatment at Mayo Clinic?

[v]

I'm so sorry to hear that.

I think these are questions you need to ask your doctor/the doctor at the clinic/your insurance company. It isn't a one-size-fits-all situation, and answers will vary by disease/prognosis/insurance program/etc.

[BioNerd]

My aunt has been living with MS for almost 20 years. So has my childhood BFFs mother. I have watched both suffer. I have no advice but certainly offer my prayers for you during this time.

[rikki]

I am so sorry. My aunt and best friend both have MS. My aunt was blind and in a wheelchair and now can walk and see thanks to her treatment, Avonex. Thankfully, there are a wide variety of drugs that are very good and I hope your husband finds one that works well for him.

I would suggest going to this website and calling one of their patient coordinators. www.msactivesource.com

My XH worked for Biogen (the maker of Avonex, Tysabri and some new MS drugs they have developed since we have divorced that I don't know as much about) and I know that they have a whole team in NC that take calls, will send you literature, and answer any questions about the diagnosis that you might have. I called them once to get info for a friend and they were incredible.

I am not sure what Mayo you'll go to, but I have been to both MN with my dad (epilepsy) and Jacksonville with my XFIL (prostate issues) and both were fabulous. I was very impressed. My aunt with MS sees a neurologist in Green Bay where she lives . I would assume that would be your husband's course, to see a doctor nearby for most treatments, in conjunction with someone at Mayo.

[orangeblossom]

I would imagine he would likely need to still have a local doctor, for flares that may pop up, or at the very least a good relationship with his GP.

Are they any MS specialists/centers or doctors close to you? I know when it was suspected that I had it, I was referred to the center two hours away. I much preferred that experience than the neurologist, mostly because they had a tandem approach, and I could get all of the tests in one place. Fortunately, it ended up being a non-issue, in that I didn't have it, but had tests been positive, I would have gone to them in tandem with a local person.

I'm sorry to hear this, and hope that is appt at Mayo is fruitful and they can give him a workable treatment plan.

[Deleted]

Sept 16, 2014 18:04:40 GMT -5 @abbycobb said:

Sept 16, 2014 17:50:39 GMT -5 v said:

I'm so sorry to hear that.

I think these are questions you need to ask your doctor/the doctor at the clinic/your insurance company. It isn't a one-size-fits-all situation, and answers will vary by disease/prognosis/insurance program/etc.

I know... I suggested to H we talk to the local neurologist first and ask them about treatment at Mayo. He's concerned that the local doc will just try to tell him they're every bit as good as the Mayo clinic, can do the same treatments, etc. The clinic doctor will I'm sure say they're the best of the best. It's sort of like we don't know who to ask, exactly?

I'm sure no one here can give me exact answers, I guess I'm just interested in any general experiences.

That's not necessarily true. In general, I think doctors are pretty good at assessing their patients and deciding if they should pursue additional or different treatment elsewhere. The doctor should be completely honest with you. Obviously they're not going to say I suck as a doctor and you should go to the Mayo Clinic, but they might say I can offer X treatment, but the Mayo Clinic has clinical trials or experimental medicines you might be interested in.

I just say that to not discount a local doctor from a community or even university hospital. I think in general doctors are good at wanting to coordinate the best care for their patients and that includes getting consults and working with doctors from bigger institutions.

I hope your H's appointment goes well. 

[nomad100]

Sept 16, 2014 18:00:38 GMT -5 @rennido said:

My FIL attended the Mayo Clinic for cancer. He had his doctor at home, and then doctors at the clinic (1500 miles away)that communicated with each other to decide the best course of action. Basically the doc at Mayo would tell the at home doc what to look for/how to give treatment. FIL would still go see the Mayo Clinic whenever they wanted him, sometimes every 6 weeks.

This is exactly what a good friend of the family did.  The local doctors (which are very good so quality of care wasn't the reason he went to Mayo) and the docs at Mayo consulted with one another to determine the best course of treatment. 

It was also because he had familial malignant melanoma and the docs at Mayo had more exposure to this particular type of cancer than the local docs. 

I would keep the appointment at Mayo since it is a ways off and meet with the local doc(s) to put together a treatment plan that loops in the staff at Mayo.

[dr.girlfriend]

So sorry to hear about your husband's diagnosis. I can imagine it must be terrifying for him, especially after watching his father struggle with the same condition. I can understand him wanting to see a specialist, but I would worry that if his insurance company penalizes for out-of-network care it may be pretty devastating financially to just jump to a tertiary care center like that. At the very least, I would also meet with someone locally who is a specialist. The MS Society has a finder for people in your area:

www.nationalmssociety.org/Treating-MS/Find-an-MS-Care-Provider/Partners-in-MS-Care

As others said, if there is specialized care that he needs that can't be delivered locally, he will be referred out, and then it will be more likely to be covered.

[my3bears]

So sorry about the news. When my DH had a stroke last October we definitely sought multiple opinions. He went to so many doctors and each one had another idea. I felt much better knowing we had so many different perspectives trying to figure it all out. Honestly 2 of the doctors dismissed it as a pinched nerve or restless leg syndrome, which is ridiculous. One of the hematologists from the top hospital in the area was the one who said it was a pinched nerve, completely ignoring the latest bloodwork results. Our neurologist was top-rated but at a more regional hospital network and he nailed his diagnosis, in collaboration with a hematologist he recommended. So you never know which doctor is going to get it right. I would get multiple opinions, and any good doctor worth working with will be collaborative. Good luck in the journey ahead.

ETA: We nearly drained our emergency fund paying for the elective 2nd opinions, and definitely went out-of-network at times. So you'll have to see what works in your financial situation and with how your health insurance works.

[Susie]

I agree with what wandering said! You may want to seek a 2nd opinion at the Mayo Clinic to confirm your comfort level with the treatment you're getting locally (or to change something about it, as the case may be) but I wouldn't necessarily discount local treatment options. I definitely wouldn't hold off on treatment until December.

When a good friend of ours was dx'ed with breast cancer, she got an opinion locally, then went to Sloane-Kettering for an app't to review the dx and proposed course of action. It confirmed she was already on the right track. Being treated locally made her a lot more comfortable in the intervening months, kept her near her doctors, the commute short, etc. Those considerations are not without merit. Going with "the best" just because it's "the best" isn't necessarily always the best choice for the circumstances.

Good luck to you guys.

[imojoebunny]

I have three friends who have gone to Mayo after not being able to get good diagnostic or treatment with regular doctors, even in a big city, with world class medicine (Atlanta). The huge advantage of Mayo is the that multiple specialist work together, not in isolation, which is what happens generally. My three friends still received treatment at home, but the diagnosis and/or treatment plan was designed by the Mayo doctors.