Dear Dr. INT1,
Thank you for your interest in the Undiagnosed Diseases Program (UDP) at the National Institutes of Health (NIH). We appreciate the opportunity to review the medical history of Meg Morgensen. However, after careful consideration, it was decided by the medical review board that we would not be able to invite your patient to participate in our program. However, we did arrange to have your patient evaluated at the NIH 7/10/08 by the National Institute of Neurological Disorders and Stroke.
Thank you for considering this opportunity to consult with the NIH on your patient. We appreciate your commitment to providing the best possible care for your patients in ways that help advance medical knowledge and discovery.
Sincerely,
Director, Undiagnosed Diseases Program
it's official- i have been rejected by NIH. while i am disappointed, part of me isn't all that surprised. i had long ago fallen into this "no mans land" of a crevice- one that is wedged between a pointy jagged rock and an indestructible piece of concrete wall- i have diagnosed MS with symptoms that exceed the "typical" profile of manifestations (like that medical lingo? impressive, i know) and diagnosed Fibromyalgia that is more extreme than "typical" cases. "typical" is a word i have become quite familiar with and offered up on a silver, unattainable platter many times over the years- its usage usually comes in a form such as this: "the thing is, isn't something we typically see in MS patients." (when i am feeling particularly bitter, i believe this is actually a cover up code for "we have no idea how to help you with this so we're going to play the ignorance card and deny any responsibility.")
and regarding said evaluation from NINDS (see government specimen posting), the results have been delayed- shockingly atypical for any type of health care related promise. sarcasm alert! sarcasm alert! dr. NINDS1 assured me at the end of my exam/visit/testing extravaganza that his final notes and recommendations would come no later than the following week- which was well over a MONTH ago. i did receive a message from him on my voice mail (yes, i have begun to check them more regularly- am trying to implement that new years resolution from 2005. better late than never!) a couple weeks ago, letting me know that he would be putting together some "recommendations" that should help alleviate some of my pain issues- another shoddy attempt at stalling. but perhaps that is merely my bitterness making a guest appearance.
so what is next dear readers? i'm certainly not holding my breath for any breakthrough suggestions dr. NINDS1 may offer up in his bare bones evaulation that may or may not ever arrive. i have however realized one of my best weapons in this ongoing battle lies in educating myself as much as possible. i think my brain is over saturated with MS knowledge, so i've decided to concentrate my studies on the fibro aspect.
during the local libary's annual book sale event this summer, we picked up a book on CFS (chronic fatigue syndrome) and fibromyalgia by mary shomon (living well with chronic fatigue syndrome and fibromyalgia: what your doctor doesn't tell you... that you need to know). after reading her introduction, i was hooked, for she seemed to be describing my descent into hell that occurred in 2005/2006. it was eerily fascinating how similar our demise played out (and continues to evolve) and the book has been amazingly accurate in chronicling conditions' manifestations as well as controversial viewpoints from various practitioners.
the book is peppered with quotes from sufferers of these conditions, and one of the comments really hit home for me. a woman, joyce, addresses the frustration of suffering from an invisible and hard to understand disease, and makes a comparison that, although extreme, is dead on.
"it is a conundrum. i give mixed signals to others... ask how i am. if i say "good, fine" with a cheerful voice, they then make the assumption that i am better, and say "so you are better, you are over it?" then i say no, that it's the same. and i wonder, do they think it odd or wrong for me to say fine? can a quad in a wheelchair say she is fine? of course she can, and no one expects her to get up from her wheelchair. when i say i am fine, i only have to explain more, and the next question, "so they haven't figured out what it is yet?" as though if they had, would i be better? who ever gets better from a chronic disabling condition? people get worse or at best stabilize over time."
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