Amateur Hour: How Vanderbilt/NIH Undiagnosed Diseases Network Failed Me

Earlier this year, I worked for four hours sorting and copying approximately 350 pages of medical records to send to Vanderbilt University in Tennessee when the coordinator for the NIH Undiagnosed Diseases Network notified me that my case was being sent there for review. I divided everything by year and specialty. I inserted notes and highlighted everything that should be of special interest.

I took it as a bad sign when I received an email that was poorly written, and rightly so:
I need you help with some missing records the UDN has requested on you. We are missing the records from the Movement Disorder Neurologist and  also labs associated with Thyroiditis Workup are not complete. Please request these records be faxed directly to us at *********** or **********. We cannot move forward with reviewing your case until we have these records. Please feel free to contact us if you have any questions.” They weren’t actually missing the records from the movement disorders neurologist; the EMG results were included in what I forwarded to them. (Special note: capitalizing random words is an elementary mistake in and of itself and certainly doesn’t belong in official correspondence.) I wrote back and asked what needed to be obtained for the thyroid workup because I was going in for an appointment in the near future and could have tests ordered. However, I didn’t hear a response for weeks. Their suggestion to contact them with questions was not sincere because they didn’t respond to repeated calls or emails for three weeks total. I went to my appointment and guessed what they would want ordered, then forwarded them the results.

It didn’t matter, though. Last Thursday July 14th I received a letter in the mail from the head of the team saying that after a “stringent” review of my case, they were turning me down. They decided that because I have a strong history of autoimmune diseases that I must consider myasthenia gravis.

Here’s the problem, though: I considered myasthenia gravis already back in 2010, and again this year, and it has been ruled out by tests including the painful tasing of my face in April. All of those notes and tests were included in my paperwork. The 53 doctors who have seen me so far have positively said that I don’t have that. I also say I don’t have that. I have not found any documented cases where patients have received a working brain shunt to move CSF to relieve the symptoms of MG. I have hundreds of pages documenting my numerous symptoms and surgeries, and instead the Vanderbilt team chose to tell me to go back to the U of MN doctors (who, by the way, told me to go away and not come back) to get treatment for MG because “they would know how to treat me.” I am not allowed to appeal this decision or have any other team look at my file. The UDN door is forever closed to me now.

The next two paragraphs I’d like to address to that team directly:

Fuck you, Vanderbilt, you backwoods amateur cocksuckers.

This is what I don’t have: myasthenia gravis, lupus, MS, normal pressure hydrocephalus, communicating hydrocephalus, Creutzfeld-Jakob, IgG4 proliferation, scleroderma, pseudotumor cerebri, diabetes, secondary tremors, tumor, chiari malformation, or rheumatoid arthritis, among other things. After seeing so many doctors and going through hell and having to research A LOT on my own, Vanderbilt, your suggestion makes me think that my file landed in the hands of a beginner’s group. I’m way ahead of you, by years, and I didn’t even finish my medical degree. Every single one of you needs to go back to studying onion skin cells under your 10x microscopes because you obviously can’t handle the hard stuff.

As I feared, Vanderbilt chose to give much weight to the three doctors in the circle jerk at the U of MN claiming I had some sort of “facial weakness” that would imply MG and completely ignores the issue with the cerebral spinal fluid, which in turn ignores the vertigo, fatigue, slurred speech, numbness, and cognitive problems. It would also imply that I implanted a shunt for the fun of it – because I want something that I’m allergic to that causes a shit ton of pain in my body. It also means that they completely ignored the notes that indicated that my symptoms subsided when I had working shunts. Now I am back to the starting point, meaning no one knows what I have or how to help me. (Please note: I am still going through testing for the mast cell activation syndrome and I am watching the results slowly trickle in; my guess is that I’m going to have to repeat everything because nothing is extraordinary in the outcomes at this point.)

I also still don’t have disability money coming in. My hearing won’t be set until about a year from now, but my chances are only about 10% in my favor at the moment because I still can’t get a diagnosis or the NIH to work with me. I’m not being dramatic, I’m being realistic. My attorney would tell everyone the same thing.

If you have read this post in its entirety, thank you. I’m not asking for advice; that’s not how I operate. This is just one of those times where the Carousel of Crap feels extra shitty.

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5 thoughts on “Amateur Hour: How Vanderbilt/NIH Undiagnosed Diseases Network Failed Me

  1. The carousel of crap is really going around with you on it isn’t it?
    I know you don’t want suggestions, but I have questions.
    What other facilities have you tried to see? Just Vanderbuilt?
    I haven’t had good reports from people who have been to Mayo, so I wouldn’t suggest there.
    I’m sure some people get great things from there, but I don’t know.
    I’ve been to Duke and John Hopkins.
    The doctor I saw for my abnormal CSF pressure is at Duke and she is wonderful.
    I don’t know if you are up for trying another doctor, but she might review your records and might have some ideas for you.
    However, she might now have a diagnosis. She treats by empirical evidence. If it works it works.
    But she may have a great insight. People come to her from all over the world with CSF problems.
    if you are at all interested, let me know and I’ll send you her information.
    She is really a great doctor who cares and wants to help.
    My experience at John Hopkins was just with the Vestibular Clinic so I can’t give you much information there.
    I think it was a little odd really. But it wasn’t a waste of time.
    So, no suggestions, just thoughts.

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    • Mayo won’t let me walk through their doors; that’s a written edict after their fifth turn-down. I’m currently on medical assistance through the state of Minnesota and I have applied for exceptions to be able to go to facilities outside of MN (including Johns Hopkins and the Cleveland Clinic), but every time they have turned me down, telling me that I have not “exhausted my resources in MN.” The reason I sent my case to the NIH is because they handle it differently; if it’s deemed an undiagnosed disease, the state will accept that categorization; also, the testing is picked up on the national level when it’s done at those facilities for the purpose of pinpointing the issue.

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  2. I dont know how you deal with this. Honestly. Like reading this has put my own struggles into perspective big time. The american medical system is way more fucked than ours in new zealand, but regardless of who’s system is more fucked, why the hell do they make our lives so damn difficult. Like shit, its difficult enough being so unwell you can barely function, then we have to fucking fight to get adequate healthcare. You know what, i hope you get better some day reaaaal soon, and then you can change the world, because i know you could. I fucking hope theres some light at the end of the tunnel for you coming up soon xo

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    • Thank you. But truly, your fucked up situation isn’t any better than my fucked up situation, and we are not in competition for the shit cookie. Your wish is my wish – I would love to get exponentially better, shake my very wide naked ass in their faces and tell them to kiss it, and then hop on a plane and get you the hell out of there. So there.

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