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? Lebron flies his sun in from California, there are tons of Saudi Arabian planes at the Rochester Airport, but my wife cant be takin on as a patient?Please help me get my wife the proper care she needs and deserves.

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

timbop @timbop

I would contact Patient Experience in Rochester and explained 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. I searched on Patient Experience for Mayo Health System, and it gave same contact info as Rochester.

https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Phone: 844-544-0036 (toll-free)

Email: opx@mayo.edu

Laurie

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.