Who will give me the medicine drug?
April 2, 2016 7:40 PM   Subscribe

I have crazy complicated medical stuff going on; started in August, went straight downhill. My most recent observation on the subject is that I've devolved from a rebellion into full scale anarchy. I've remarked frequently that I need Dr. House and his team to figure all this crap out. Where's the real-life Dr. House et al? If money were no object, if the doctors and travel and all of it was taken care of, where do I go? Preference given closer to central Kentucky, but start with who's the best.

YANAD etc.

I have a vast web of doctors in multiple cities, but since the system is glacially slow, my insurance sucks, and everyone's overworked, I'm not getting anything substantial enough to be helpful. It's all "let's make this infinitesimal change then have you come back in 3 months to see what happened." And my PCP is doing her best to coordinate everything, but it still feels like things are slipping through.

The biggest overarching issue is unexplained weakness. When it started, I thought it was just fibromyalgia and exhaustion. But it's gotten worse and worse and worse... It comes and goes. There are better times and worse times. Really good times, I can walk about 10 feet before I have to fall into my desk chair and recover. Bad times, I can't walk at all, and struggle to scratch my nose. After it had been going on for about 4 months, I spent 4 days in the hospital undergoing extensive neurological testing. The only thing we learned there: it's not neurological. Frustrating when half or more of the symptoms seem to be nerve-related.

(It all used to be good days and bad days. Now the norm is that I have a couple hours a day that are good, then I'm weak and muscle spasmy and brain fogged the rest of the day.)

There's a lot more, but I'm already going on 3 hours on this message. I need Dr. House. I don't know where to find him. This vexes me.
posted by The Almighty Mommy Goddess to Health & Fitness (16 answers total) 2 users marked this as a favorite
the mayo clinic? but i don't really understand, because if money is no object, why do you care that your insurance sucks?
posted by andrewcooke at 7:48 PM on April 2, 2016 [5 favorites]

This sounds exactly like my really bad days dealing with POTS. Do your legs turn purple or red when you stand up? Does your heart rate skyrocket when you stand for more than 5 minutes without moving?

I'd definitely investigate that. Before I figured out I had POTS (with some suggestions from Mefi people) I was looking into submitting a case to CrowdMed which is an online resource with "medical detectives."
posted by Crystalinne at 7:54 PM on April 2, 2016 [3 favorites]

Sorry, should've kept typing.... My parents are very well off. I have no money and no income, and live with friends who take care of me who have three kids and very little money. In the world I'm in now, lousy Medicaid is all that exists. I'm considering asking my parents for help to get this dealt with, and trying to come up with thoughts on where to go.
posted by The Almighty Mommy Goddess at 7:58 PM on April 2, 2016 [1 favorite]

Mayo Clinic. You may self-refer. They take a great many insurance plans, including some Medicaid plans, although you may require pre-approval from the insurer. I know a shocking number of people who've been there, sometimes just for an ultra-well-qualified second opinion on an unusual diagnosis, sometimes for a mystery they can't get diagnosed locally. I used to think it was a magic place where hardly anybody went, but no, actually, kind-of a lot of people go!
posted by Eyebrows McGee at 8:04 PM on April 2, 2016 [3 favorites]

Any chance you might have Lyme disease or a similar infection? It might be worth seeking out a Lyme Literate Medical Doctor (LLMD).
posted by kidbritish at 8:46 PM on April 2, 2016

My Mayo Clinic Story:

One of my parents went to the Mayo Clinic to diagnose a mysterious shadow that showed up on an x-ray after a horse riding accident. It was extremely stressful because it could have been either a super rare and virulent form of cancer, or a super rare and benign growth, and it was in a very difficult place to access up among their torso. Thankfully it was the benign growth and my parent's case is now in medical journals as the first documented case in the US in this century!

But anyway, my parents were terrified and everything was extremely scary for a while and it was an odd and difficult to diagnose case. But as soon as they got settled in at the Mayo Clinic, everything got much better. They got a team of doctors who worked with each other and with my parents, they were wonderful about letting them know how long tests would take and the process, and they were quick to realize that my parents benefitted from different kinds of bedside manner with one needing all the information and academia and the other needing action and distraction, so that they could then help each other best. The very touchy and finicky surgery to remove the growth went perfectly despite my parent's touchy medical history, and they rushed the biopsy to be doubly sure it was benign and not at all tumor-y.

Earlier this year I had weird pains in my chest (turns out the crappy ikea desk chair was hurting me, but it sure felt like heart problems) and my mom was like "you need to go to Mayo? We will send you to Mayo. We know people. Let's do this thing." It's like their go-to and I'm sure when one of them gets really sick later in life they are going to pull whatever strings they can to get treated there.
posted by Mizu at 8:49 PM on April 2, 2016 [6 favorites]

Mayo Clinic is pretty incredible and talented, they are most likely the world's best, and work across all their many disciplines to get things done. My mother-in-law went there for a diagnosis and surgery that was complicated by many pre-existing conditions, and they did it flawlessly. I think 2nd after that might be Johns Hopkins in Baltimore.
posted by nickggully at 8:49 PM on April 2, 2016

I'm considering asking my parents for help to get this dealt with

If you were my child, and I were rich, I would spend every penny of my wealth to help you. Not sure why you are living in poverty and questioning what you have, if you have wealthy parents, but please ask them to help you and get help, whether it's from their insurance or via the other venues offered here from well-meaning people.
posted by Marie Mon Dieu at 9:25 PM on April 2, 2016 [6 favorites]

Another voice for Mayo Clinic in Rochester. They figured out what was wrong with my father when other doctors couldn't--took months, but they figured it out and kept him alive & healthy for 25+ years. I had orthopedic surgery there. They helped cure my SIL's stage 4 ovarian cancer. Lots more stories of good results from friends & acquaintances.

The way they work with teams of doctors is great & efficient. Need a bone radiologist? There's one down the hall that can come read the scans now. None of this, do the scan, we will call you in a week. Need a world-reknowned cancer doctor? Right there, she will see you today. It is all right there. Obviously no one can guarantee a diagnosis, but there is a greater chance at a place like Mayo, in my opinion, because it is not a patchwork of putting specialists together & hoping they all know what's been done, and then relying on your PCP to coordinate. It is all coordinated at the Clinic (who will inform your hometown PCP). Your web of doctors in multiple cities will be a web of doctors in one place who work together on complex cases regularly. Both more efficient for you, but also a higher chance of results. It is a well-oiled machine.

They also have a medical school, so it is on top of latest research/care, etc. You do see a lot of medical students, post-docs, whatever, since doctors & researchers also come from around the world to study at Mayo.

They do a great job of keeping you informed, too--I sat with my brother the day of the SIL's surgery. We had a 'nurse communicator' assigned to us who keep us informed every step of the way, had advice (now would be a good time to go eat, for example)--it was great. Having sat at other hospitals through similar experiences, where no one tells you anything, there is no comparison.

People do come from all over the world to Mayo. (One time, there was a Saudi Prince & his entourage on the same floor of the hospital as my father.) But as noted above, 'regular people' go there, too.

I understand Cleveland Clinic is similar in approach to Mayo.

I wish you luck in your journey.
posted by Nosey Mrs. Rat at 9:46 PM on April 2, 2016 [1 favorite]

To answer your question in a super literal way, Dr. Lisa Sanders is one of the real-life inspirations for House and has a column in the NYT.

If you want options beyond the Mayo Clinic, you could try the major teaching hospitals that are well-ranked in internal medicine: Harvard, Hopkins, UCSF, UPenn, Duke, St. Louis, Vanderbilt, etc.
posted by en forme de poire at 10:19 PM on April 2, 2016

My mother, who has a health history of lots of very weird things, went to Mayo and said that other than when I took her to France, it was the best vacation she ever had! She said she felt none of the frustration of a typical medical experience -- she felt listened to, cared for, and respected. In the end, she had a pretty prosaic explanation for her most pressing problem, but she found explanations (and got documentary proof) of so much else that was going on.

If you really don't want to travel far from central Kentucky, Vanderbilt is your best bet. The care is excellent, and they provide exemplary patient care, but if you can go anywhere, Mayo's team approach is what I'd recommend. Plus, people in Minnesota are so very nice!
posted by The Wrong Kind of Cheese at 10:55 PM on April 2, 2016

You might look into The Undiagnosed Diseases Network, a program that will put your case before Dr. Houses all around the country. Vanderbilt is a participating location.
posted by apparently at 1:07 AM on April 3, 2016 [1 favorite]

There's an intermediate step between asking your parents to pay for a Mayo Clinic comprehensive assessment and workup, which is so expensive they may not be able or willing to pay for it, and that's for them to pay to upgrade your insurance. A Platinum-tier unsubsidized ACA exchange plan with a good network will cost a single woman around $1,000 a month, and can be canceled at any time. One challenge is that they tend to be very state-specific. If your parents happen to live in a state where there's a bigger research medical establishment than Kentucky, relocating to stay with them temporarily, and buying a policy in that state, might be best.
posted by MattD at 7:18 AM on April 3, 2016 [4 favorites]

You might try to find a Direct Primary Care clinic. That can be helpful because it gets you more face time with your primary care person. But it does involve a monthly fee.

plus, my recent reply to a similar question.
posted by Michele in California at 12:55 PM on April 3, 2016

The Open Medicine Institute in Mountain View, CA, are very helpful for "challenging, difficult to diagnose, poorly understood diseases". In our case they're working with my daughter on fixing her chronic fatigue.
posted by anadem at 7:01 PM on April 3, 2016

Just in case you'd like to take a complimentary approach, you can crowdsource your medical problem.
posted by *s at 8:08 AM on April 4, 2016

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