“I’m not going to tell you every little detail of my life, every little symptom, every secondary diagnosis, but I am going to talk about things that I have a feeling others who are undiagnosed may have experienced as well. My goal is not to get diagnosed on this site; my goal is to create a community who’s members support each other by sharing ideas on how to cope with having a serious illness either unknown or undifferentiated.

I have had health issues since the time I was born. Multiple systems have been affected and symptoms have consistently worsened over time. I live with a lot of pain in several areas of my body on a daily basis. Based on illnesses that have similar symptoms to whatever illness I have, my doctors and I have come up with a treatment plan. This being said, many of the drugs I am on, and have been on in the past are not benign. Many have caused even more health issues, and in some cases, put me in the hospital.

As a child I missed a lot of school. This hindered my school experience and social life. I was introduced to the operating room in elementary school and proceedures would become a big part of my life. As I grew older, more organ systems were affected, more joints were breaking down, and falls playing sports more frequently turned into broken bones.

In high school I missed the last half of senior year recovering from a surgery gone wrong, landing me in the Mayo Clinic for two weeks. Procedure after procedure was done to try to fix the original surgery, but Mayo would not undo what had been done in the first surgery.  Without positive results at Mayo Clinic, I found a doctor in the Southern United States who redid the surgery, and it could not have gone better. I was back.

Then came University, which coincidentally was at the same university where the doc that redid the first surgery practiced. With university came more surgeries, more procedures, and more trips to the ER because of intense pain that came on suddenly and seemingly without reason, as well as other frightening symptoms. I ended up having to take medical leave 3 semesters during University (one Freshman year, and my entire Junior year) and had difficulty making it to class when I was able to be at school because of the fatigue and pain that accompanied the undiagnosed illness.

These were minor problems compared with what has happened in the last two years. After graduating, I took a job that, at the time, I had described as being my dream job. Yes, initially it was high stress, low pay, but after moving up the ranks, the payoff could have been unbelievable. A year and a half into my “dream” job my health took a serious turn for the worst. Pain, joint issues, headaches, weird virus-like illnesses, skin problems, and so on. After being seen at the top two hospitals in the state, I ended up going to Cleveland clinic to be seen by all the “ologies” they could pack into a two-day trip.

I thought I finally had my diagnosis: Psoriatic Arthritis. Then I went back home and could not find a doctor to treat me. It was like no doctor wanted to take responsibility for putting me on something that could help, but could also have serious side effects. At this point I was desperate, I was miserable, and I was tired of being “punted” around from specialty to specialty. I tried to go back to work but could not. I had to move cross-country into the basement of my parent’s house. Since then I have had 2 inpatient hospitalizations, and 3 other trips to the ER.

So far I’ve seen:

• Internal Medicine

• General Surgery

• Urology

• Rheumatology

• Neurology

• Nephrology

• Psychiatry

• Spinal Specialist

• Gastroenterology

• Orthopedics

•  Ophthalmology

•  Dermatology

•  Endocrinology

•  Infectious Disease

• Immunology

• Integrative medicine (acupuncture, dietician, chiropractor)

I have been checked for almost everything under the sun. The majority of tests come back negative but there are some significant tests that have come back positive. The problem is, they just do not make sense when put together, or they are considered “non-specific” findings. The leading theory now is this is “something new.”

Doctors in the past have given me what they call “trash can diagnoses.” I have been told we don’t know what you have so it’s IBS. We don’t know what’s going on so it must be CFS/ME. It’s something rheumatologic so here, have some prednisone. After years and years with major health problems, I started to feel hopeless when it came to getting a real diagnosis, and a real treatment plan to get me healthy again.

A doctor who was at the time running point on my case even told me that their office would no longer be seeing me on a regular basis because one of three things will happen.

• It changes and can be diagnosed.

• It doesn’t change and I have to live with it

• It miraculously gets better and then no worries

Doctors have asked if they could use me in research papers and present my case at “conferences.” It really has baffled doctors at the top medical institutes in the nation. I am not proud of this, I do not think this is cool, if I could trade the years of pain and difficulty for a healthy body, I would not hesitate.

I have in the last few months found a doctor who is willing to brainstorm WITH me about how to go about treating whatever it is that is causing me to have such poor health. Since then I have tried acupuncture, a chiropractor, mind-body excercises, a VEGAN diet, different medications, strategies for coping with pain, and different exercises to try an strengthen my body as a whole. Things are getting better slowly, but still no diagnosis, no treatment plan.

I find myself thinking that if I didn’t have great health insurance or a family that supported me and has connections to people within the health industry, I would be much worse off than I am now. And I have a feeling that there are undiagnosed people out there that feel completely abandoned by the medical industry because I know I have felt that way and I have had the opportunity to go to the best medical institutions in the country.

I do not want anyone to read this and feel sorry for me. These challenges have made me who I am today and I like that person. Albeit I would much rather be healthy and not have to deal with health issues on a daily basis. I just want people out there to know that they are not alone because being undiagnosed can be so lonely. There are few support groups if any around, there is very little information, and very few advocacy groups.

You may feel crazy, like its all in your head; you may feel like you are the only person suffering a disease without specific treatment; you may feel abandoned by people closest to you, even your own doctors. Just know that there are others out there going through similar circumstances and emotions and hopefully, through this site, we can start connecting. We can have a voice, and eventually, we will make that collective voice heard.”