By Chelsea Freund

I first became sick in July 2010 at age 36 while living in Phoenix, Arizona. I was suddenly struck by intense vertigo and fatigue. Within a few weeks, my face developed partial paralysis across the forehead and left eye, ptosis in both eyelids, slurred speech, toes pointing inward when walking, and tremors in my neck that forced me to constantly nod “yes.” I have autoimmune conditions including Hashimoto’s thyroiditis and alopecia universalis, so I have always thought that this was another manifestation of an autoimmune condition.

It took me until May of 2011 to find a doctor who would work on me and possibly provide a solution. A neurosurgeon with Barrow Neurological in Phoenix decided I was a good shunt candidate because after performing two lumbar punctures in four days, my symptoms cleared for 12 hours each time. My first shunt surgery was in July 2011. However, within 46 months I had a total of ten surgeries: 6 LP shunts, 2 cisternoperitoneal shunts and 2 VP shunts were all clogged or broken down by my body, some within weeks of being implanted. I was growing scar tissue in four weeks that was normally seen in patients after 20 years. My neurosurgeon decided to stop operating on me because shunts no longer seemed like a viable option. He also determined that he would not actually be able to diagnose my disease, and that I should pursue answers from other specialties.

I moved back to my home state of Minnesota hoping that I could be seen at the Mayo Clinic in Rochester. Unfortunately, they have turned my case down a total of five times, saying I’m “too rare to diagnose or treat,” so I can’t even walk through the door. My case has been taken up by the University of Minnesota physicians, who I hope will provide connections with research and resources. From July 2010 until today, I have seen a total of 46 doctors in 8 specialties in both Arizona and Minnesota. Most have told me they can’t help me and not to return. Not having a diagnosis is not only dehumanizing, it’s making my case for disability that much harder – and my money is dwindling to nothing. Every day I spend my time laying flat on my bed because then the CSF can’t pool and press on my brain stem and the nerves leading to my face. Now the only places that give me hope I’ve contacted online via Twitter. I have nothing better to do besides rest and try to make connections with people and organizations I think can possibly help me.

10 thoughts on “46 Doctors and Counting: Why Can’t Anyone Figure Out My Disease?”

  1. Anonymous says:

    Has anyone talked with you about Functional Neurological Disorder?

  2. Cynthia Alberson says:

    Have you reached out to the National Institutes of Health? Also the Mayo Clinic I believe has a rare disease diagnosis center? Good luck to you. xoxoxo

  3. Polly Moyer says:

    Is that the condition that leads to clinicians into believing that symptoms such as these are, somehow, generated by a patient’s psyche? I’ve encountered clinicians with this – as yet ‘medically unexplained’ – condition and have observed how opposed they can become to both the spirit and practice of scientific enquiry. Some may be curable. But, without early treatment, the prognosis isn’t good.

  4. Kim says:

    Have you been tested for Lyme Disease (Igenix) and co-infections?

  5. Jen says:

    Please submit a case at crowdmed, hopefully someone from crowdmed can help you.

  6. Lisa says:

    Has anyone seriously tested you for Lyme disease? It can cause many of these symptoms and most “regular” tests will not detect it.

  7. Chelsea Freund, I’ve been undiagnosed for 10 years and counting, and I like to think that I’ve at least learned a few things along the way. I have a few ideas that may help. You are NOT out of options. Shoot me a message anytime. My Twitter is @dee62383, or you can reply to this comment. Global Genes also posted this story on Facebook, and I posted a comment on the story there as well. My profile picture is the zebra stripe awareness ribbon. Thanks!

  8. Lisa picked up on what it is! I can’t believe it, but after all of this time, I got the diagnosis of late stage Lyme. I pinpointed it to a hike down the Grand Canyon in 2009; I didn’t get a bull’s eye rash or a fever to alert me that I took on an infestation of bacteria, so I have never been treated. Phoenix is not known for having a high tick population either, but the Grand Canyon is 3.5 hours north and a much different climate, with hosts a-plenty for ticks. My antibody tests are up to par with the CDC’s base requirements and so my case will be reported and counted; if there are a dozen reported confirmed cases for AZ, I will be surprised. I have just begun care under a naturopath and a Lyme-literate MD who just happens to be a half mile from me and takes insurance – I feel like I hit the lottery! I appreciate everyone taking interest in my case. It has been a long, difficult and painful journey, and as some of you may know, I may not recover because of the length of time this has been doing damage to all of my systems and organs.

  9. Kim says:

    I’m so glad you found the answer. My 5yo son was just dx with Lyme Disease and we’re going through treatment with a naturopath. He loses language every time he’s sick, and we have been through years of many misdiagnosis…regressive autism, PANS, etc. So I’m glad I read your story to ask you to test for it – even if Lisa beat me to the punch. 😉

  10. Kim, I wish you and your munchkin all the best! It’s disheartening and dehumanizing sometimes, I know. I can relate to the loss of language too. I can’t believe how much I stutter or forget words, and I was a theater major, so it’s embarrassing (to me). I have also been a proofreader for years and now I struggle to spell correctly. I end up spelling things phonetically (which wouldn’t be so bad if we weren’t talking about goofy English) or I type words backwards or letters out of order. It’s incredibly frustrating.

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