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Need help getting a Multiple Sclerosis specialist to care for my wife.

Posted by timbop @timbop, Oct 11, 2023

My wife (Dee-30years old)was diagnosed with MS over a year ago after experiencing vision issues by the specialist at mayo clinic in Rochester. Quick history: wife had her primary and the kids primary at the mayo clinic in Austin. Shortly before the vision issues started her primary retired so was kinda in limbo when this all started. Went to mayo in Austin, they referred her to immediately go to Rochester facility because they were more equipped and had alot more specialists. So she was diagnosed by the head specialist and he made her feel like there was an army behind her and she wasn't gonna die. We make it known we'd like all treatments and appointments going forward be with the specialists at the Rochester facility. But for some odd reason after leaving they tell her to see the neurologist in Austin "because its closer and less patients and more one on one attention" , but get treatments in Rochester. Mind you we live 25 miles from either location. So long story even longer, she's had 2 rounds of ocrevus in Rochester and THEE neurologist in Austin flat out told her he doesn't know much about MS. Has told her basically none of her ailments are MS related. Also told her it's impossible to get new lesions on your spine while on ocrevus. 2 weeks ago the latest MRI revealed a new lesion on her spine. She badly wants to be seen at the Rochester facility, and be done with this clown in Austin. All they keep telling her is; we are outside there range for patients? Please help me get my wife the proper care she needs and deserves.

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Mentor
Laurie, Volunteer Mentor | @roch | Oct 12, 2023

timbop @timbop

I would contact Patient Experience in Rochester and explain the situation. You are a Mayo patient and have established care in Rochester. If you're not receiving adequate care at Mayo Health System, they may be able to help. Here's the contact info.
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll-free)

Email: opx@mayo.edu

Laurie

REPLY
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Oct 13, 2023

Hi @timbop, I know full well your anxiety and frustration doing what you can to care for your spouse. MS is scary stuff. It’s unfair. It’s life changing. The medicines can be very expensive and often the doctors have no idea the costs involved.
Ocrevus will slow the progression of MS in Relapsing form of MS and in Primary Progressive MS. It will not stop or cure MS. No drug yet can do that.
My wife went on Fingolimod (Gilenya) when it became available and fortunately she had no new lesions in ten years. But prior meds were not as successful such as Avonex, BetaSeron, Copaxone (sp?) which were the original three (known as ABC meds) for years .
In your wife’s case, it is very possible to have a lesion form within days of an MRI or scan. This will show up on the next scan. MS doesn’t play fair.
My wife is crippled by MS. Yet she does walk although at times not well at all. She has issues every day but she lives the best life she can. She doesn’t give up. We laugh at the weird stuff that happens. I’m sure you are not ready for that yet however.
Best advice: learn what you can about this autoimmune disease, her body attacks herself. Learn about meds and side effects of the meds. Learn about living with MS. Reach out to others in your town, church, support groups and Mayo Connect. Find a good brain doctor and keep your GP in the loop.
Finally: with MS, “you don’t get it until you get it.” No one can really understand MS until they actually have MS.
I know you are angry. I know you want to fix this. You can’t. But you can be with her, hold her hand, open her doors, help her walk through life, help her fight and not give up. Be there for her. Wipe her tears.
Life is what happens when you’re making other plans.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 22, 2023

Hi @timbop, were you able to contact Mayo Clinic's Office of Patient Experience?

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timbop | @timbop | Nov 21, 2024

This is going to be way too long but I'll try and keep it short. My girlfriend's primary doctor has always been in Austin, MN about 23 miles from our home. She was referred to Mayo in Rochester, MN (about 26 miles from our house) for further testing. She was diagnosed with multiple sclerosis at the age of 31. At this time her primary doctor was retiring and she was wanting to have all her medical needs done in Rochester going forward. When diagnosed in Rochester the doctor made us feel like we weren't alone in this lifelong battle that there would be a team of experts that would help her. After leaving that appointment is when it all seemed to change. They said she should just continue using Mayo in Austin as its closer to our home.(its like a 2-3 min difference of a drive) She expressed how she would like all of her future appointments and treatments done in Rochester. I mean they are known as one of the best hospitals in the world it only makes sense. But unfortunately her request fell on deaf ears and she was referred to a neurologist in Austin, but her infusions would still be administered in Rochester. Well this neurologist openly admitted he didn't have much knowledge or experience when it came to MS. Any questions she had or ailments she would suffer he would have to send to the specialists in Rochester to get the answers which was not a timely process. She then requested a transfer to the Rochester doctors and "the board" denied her in Rochester saying they weren't taking new patients at this time?? Also was told only accepting patients that lived in Rochester. Mind you the head of "the board" was the same doctor that originally diagnosed her and made us feel so good about the team behind her. So eventually she found specialist in Minneapolis(2 hours from our house) but isn't a mayo facility. Still getting infusions done in Rochester. She tried again to be seen in Roch but was told that they were no longer treating patients with MS just giving the original diagnosis. Clearly thats not true. So how can I help her be seen by a specialist in Rochester regularly?? Is there something on her file saying don't accept this patient? So lost and makes no sense what so ever to me. Any help at all would be wonderful to our little family. Thanks, Tim.

REPLY
2 replies
delphiniums | @delphiniums | Nov 21, 2024
In reply to @timbop "This is going to be way too long but I'll try and keep it short. My..." + (show)
@timbop

This is going to be way too long but I'll try and keep it short. My girlfriend's primary doctor has always been in Austin, MN about 23 miles from our home. She was referred to Mayo in Rochester, MN (about 26 miles from our house) for further testing. She was diagnosed with multiple sclerosis at the age of 31. At this time her primary doctor was retiring and she was wanting to have all her medical needs done in Rochester going forward. When diagnosed in Rochester the doctor made us feel like we weren't alone in this lifelong battle that there would be a team of experts that would help her. After leaving that appointment is when it all seemed to change. They said she should just continue using Mayo in Austin as its closer to our home.(its like a 2-3 min difference of a drive) She expressed how she would like all of her future appointments and treatments done in Rochester. I mean they are known as one of the best hospitals in the world it only makes sense. But unfortunately her request fell on deaf ears and she was referred to a neurologist in Austin, but her infusions would still be administered in Rochester. Well this neurologist openly admitted he didn't have much knowledge or experience when it came to MS. Any questions she had or ailments she would suffer he would have to send to the specialists in Rochester to get the answers which was not a timely process. She then requested a transfer to the Rochester doctors and "the board" denied her in Rochester saying they weren't taking new patients at this time?? Also was told only accepting patients that lived in Rochester. Mind you the head of "the board" was the same doctor that originally diagnosed her and made us feel so good about the team behind her. So eventually she found specialist in Minneapolis(2 hours from our house) but isn't a mayo facility. Still getting infusions done in Rochester. She tried again to be seen in Roch but was told that they were no longer treating patients with MS just giving the original diagnosis. Clearly thats not true. So how can I help her be seen by a specialist in Rochester regularly?? Is there something on her file saying don't accept this patient? So lost and makes no sense what so ever to me. Any help at all would be wonderful to our little family. Thanks, Tim.

Jump to this post

Tim, I'm so sorry for you and GF, this must be beyond frustrating feeling like care has been put behind a wall. I'll say doctors are often not fully aware (or willing to acknowledge) the logistical limitations that come with such a large hospital — so they'll make promises that can't be fulfilled.

We've experienced that too, and it can be a real let down.

Rochester is one of the best in the nation, foremost because its specialists/nurses are *not* dealing with an over-exhaustive patient load. But this means triaging only the most urgent/risky cases to the most in-demand facilities and specialists.

Coming from a family of nurses, I understand how hard it is feeling like just "one of many" seeking treatment, and not getting the first pick of doctors.

Personally, we continue to have care and treatments for my husband split across two facilities (Mayo in Phoenix and Scottsdale, sometimes both in the same day). I don't think that's uncommon. Mayo will send you where resources are available.

But regarding the neurologist they gave you *not* specializing in MS...

Is there a better specialist at Mayo, in Austin, that you can ask to see?

Also, I wouldn't write off this neurologist's ability to conference with other Mayo specialists. My husband's doc conferences same day as our appointments. And you can message any of those specialists directly via the portal. Still not ideal, I know...

Personally, I would choose any Mayo specialist over a non-Mayo specialist, solely because they have such an extensive set of specialists and private research — and they really do take a collaborative approach to care. But I would suggest expressing your concerns to her current Mayo specialist and see what options he can give you.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 21, 2024
In reply to @timbop "This is going to be way too long but I'll try and keep it short. My..." + (show)
@timbop

This is going to be way too long but I'll try and keep it short. My girlfriend's primary doctor has always been in Austin, MN about 23 miles from our home. She was referred to Mayo in Rochester, MN (about 26 miles from our house) for further testing. She was diagnosed with multiple sclerosis at the age of 31. At this time her primary doctor was retiring and she was wanting to have all her medical needs done in Rochester going forward. When diagnosed in Rochester the doctor made us feel like we weren't alone in this lifelong battle that there would be a team of experts that would help her. After leaving that appointment is when it all seemed to change. They said she should just continue using Mayo in Austin as its closer to our home.(its like a 2-3 min difference of a drive) She expressed how she would like all of her future appointments and treatments done in Rochester. I mean they are known as one of the best hospitals in the world it only makes sense. But unfortunately her request fell on deaf ears and she was referred to a neurologist in Austin, but her infusions would still be administered in Rochester. Well this neurologist openly admitted he didn't have much knowledge or experience when it came to MS. Any questions she had or ailments she would suffer he would have to send to the specialists in Rochester to get the answers which was not a timely process. She then requested a transfer to the Rochester doctors and "the board" denied her in Rochester saying they weren't taking new patients at this time?? Also was told only accepting patients that lived in Rochester. Mind you the head of "the board" was the same doctor that originally diagnosed her and made us feel so good about the team behind her. So eventually she found specialist in Minneapolis(2 hours from our house) but isn't a mayo facility. Still getting infusions done in Rochester. She tried again to be seen in Roch but was told that they were no longer treating patients with MS just giving the original diagnosis. Clearly thats not true. So how can I help her be seen by a specialist in Rochester regularly?? Is there something on her file saying don't accept this patient? So lost and makes no sense what so ever to me. Any help at all would be wonderful to our little family. Thanks, Tim.

Jump to this post

@timbop, thank you for trying to explain the twists and turns of your girlfriend's health journey at Mayo Clinic between the Health System and Mayo Clinic in Rochester. @delphiniums is right that specialists at Mayo Clinic, including those in the Mayo Clinic Health System work collaboratively.

Your girlfriend has a neurologist at Mayo in Austin who has full access to his colleagues at Mayo Clinic in Rochester should he need to consult with them to provide top quality care for your girlfriend. This may be her best access to the team's expertise if there are no appointments currently available in Rochester and she will get care closer to home.

If you would like to speak with a patient advocate, I encourage you to contact the Office of Patient Experience.
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll-free)
Email: opx@mayo.edu

They can talk more specifically about your girlfriend's situation and ensure she is getting the best and most convenient care she deserves.

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