I'm 11 Years Into My Search for a Diagnosis

I’m 11 years into my search for a diagnosis. That’s a third of my life spent in and out of doctors appointments, doing medical research in my free time and living a life limited by disability with no name. I’ve flown 1,100 miles in search of an answer. I’ve been to multiple doctors in every specialty. And I’ve even tried holistic and alternative medicine. My Hashimoto’s disease was diagnosed when this horrific journey first began. But no one has an answer as to why I have continued muscle weakness, pain and muscle twitching that is so limiting at times I cannot leave my house.

I’ve changed my diet at the recommendation of other patients, and I’ve tried various supplements over the years. I can’t even imagine the amount of money I’ve thrown away with the hope of somehow feeling well again. Friendships have come and gone as most young people don’t have time to deal with this type of baggage. And family becomes stressed from picking up the slack when my body can’t handle the life in front of me.

I have one final destination in mind on my search for a diagnosis. A research study run by the Department of Health and Human Services takes on people, like myself, who have gone undiagnosed despite an extensive work up. The downside is that they require an application and a referral letter, and depending on your medical situation, they may or may not be interested in studying your case. To think that my last hope may reject me, leaving me stranded and alone, is disheartening.

Those of us who have gone undiagnosed for a period of time are hanging on by a thread with no one to help pull us back up. We are left alone to decide what the next move is. Which specialist? Holistic versus conventional medicine? What facility? If you speak to conventional doctors, they advise you to stay away from holistic medicine. If you speak to holistic doctors, they apparently have the answers that conventional medicine does not. I have tried both; both have failed me. My mind is exhausted, confused and doesn’t know who to trust anymore.

I can only hope that another decade won’t pass without a diagnosis. But with a health system that doesn’t have a plan for patients like me, I end up on the sidelines waiting for something that may never happen.

Something must change for the undiagnosed community. We need someone to hear our calls for help. We need a place to go where doctors don’t stop thinking until an answer is found. A place that accepts anyone who is chronically undiagnosed, no application necessary. We need a facility where doctors can work together and use their knowledge and expertise together to come up with a plan. That is something I have yet to find. But I will keep searching. And I will use my voice until it’s gone to spread the word about this dire need in our world that is surely capable of this.

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