When a Doctor Doubts You

Have you ever been yelled at like a new military recruit by your family physician, who also happens to be a US military Colonel in full uniform? He made me feel like every day of my illness had been fake and made up and he literally told me I was ruining my husband’s military career. You haven’t? Lucky! Because I have. I left his office in countless tears, hyperventilating and unable to speak or walk (literally, those are symptoms of my condition). I never walked back into that clinic EVER again. I’m not saying all military doctors are not compassionate, but he certainly was one of the worst. His attitude and actions exasperated my symptoms.

That raises a question, how many doctor’s have you ever felt “scolded” by? Since my quest to find a diagnosis, I’ve seen around 15 to 20 various doctors (mostly neurologists) since 2004. Think of the TIME and MONEY…that’s enough to trigger stress-related symptoms! I’ve traveled far and wide to find hope and it took me about 9 years to find the first brick on the road to where I am today. Where am I?? In a better place pain-wise and emotionally than I was 5 months ago after 13 years of craving relief. How did I get here? Through so many detours!

In 2004 I was in an automobile accident that would set the stage for year’s of pain and suffering, both mentally and physically. I had migraines here and there before this accident and had issues with low blood sugar, but they were under control and didn’t happen very often. Fast Forward a few months after the accident, I was rushed to the emergency room with strange, painful symptoms that had the ER doctor’s scratching their heads. They tried EVERY pain medicine they had and I was still writhing in pain holding my head. As a last resort a Neurologist was called for consult. I was given a different IV medication and finally had relief. It turned out to be a severe neurological event and the first day of year’s of confusion, doubt, and referral after referral.

My first doctor diagnosed me and after a while changed his mind after several tests and no relief. Second doctor diagnoses me, little to no relief, after a year changes his mind. A third doctor diagnoses me, says it’s too complex and over his head. And on, and on it goes. Keep in mind, while most of my doctor’s were neurologists, a few rheumatologists, endocrinologists, and internal medicine specialists were sprinkled in as well. Blood tests and radiology tests were always normal, with the exception of a couple EEGs. But it wasn’t epilepsy. So what is it? Symptoms ranged from severe migraine pain to unilateral muscle weakness, almost paralysis. And don’t get started on my own Google searches for answers. At one point I was convinced I would die soon. Ha!

Doctor after doctor conducted test after test only to “fire” me as their patient because I was “too complex.” This became the theme of the last 13 years. This whole journey has left me mentally and physically incapable of living life to the fullest. Not only did I have to manage my pain and physical symptoms that leave me unable to walk or talk, I also had to manage the undeniable stress of calling doctors and clinics to try to find someone willing to help me after so many diagnosis’ of a complex condition. I went from doctor to psychologist due to the mentality that maybe it’s all in my head (although doctor’s did stress that I was not making it up of course). I do believe functional illnesses exist and I do believe that we can trigger symptoms through stress and emotional distress, but after so many psychologist visits, they say something like, “while you are definitely stressed and stress is triggering symptoms, the illness itself is beyond psychological.” So back to the doctor I go. This happened over and over. I literally felt like I was a beat up baseball being thrown from doctor to psychologist, back and forth. After a short time, this whole game became a trigger.

After many, many visits to the ER, I have developed anxiety to those visits, which I never had before. As soon as we’d be in the car or ambulance I’d start to develop an awful anxiety and I wanted to run out, literally. I was crawling up the bed, it felt like anyway. If I had IV in, I wanted to pull it out and run away. Even if I was getting relief. Why you ask? Because ER doctors couldn’t understand how a migraine could cause all of these symptoms. It was just not likely. I was a drug seeker looking for release. No matter what diagnosis I had and from what reputable doctor, it didn’t matter. I’ve had some pretty nasty ER doctor’s and I sometimes left in tears, still in pain because I was not treated with anything accept IV electrolyte fluids. If this happens to you, no matter what illness you have, I highly suggest you get together with your doctor(s) and create a signed Hospital Emergency Management Plan, file it with the hospital, and take a copy each time you go.

Fast Forward to today, I am in much less pain, no crazy neurological symptoms, and emotionally more healthy. Why? I found a team of doctor’s (all with the same clinic) who are able to treat me from multiple directions and who understand that what I’m going through isn’t just emotional or mental, but physical as well. They listen to what I have to say, take notes, have compassion, and are empathetic. Yes, I have to travel 10 hours for this kind of care. But it’s worth it. I feel like I’m stepping on the first brick to the path of wellness. It’s likely I won’t see a cure, but I will have a beautiful life. I’m all in.

Have you ever had a doctor doubt you? I have. Until now.

3 Replies to “When a Doctor Doubts You”

  1. Your story breaks my heart. The first doctor said “for all I know it’s in her head” regarding my optic neuritis . When my full blown ms attack happened I thought it was a mental thing. My parents had to get me to the doctor and I was diagnosed immediately with MS. Wasted 6 months of having been on preventive medicine instead I had my first attack my biggest lesions on my brain. There are other doctors That just wanted to do more test so they can get more money back not having a clue what was wrong it was pathetic.
    I’m glad you finally found a good team that cares about you like doctors should..

    1. Unfortunately that is a lot of people’s reality. I understand some conditions are very hard to diagnose, but what I think a lot of doctor’s forget after year’s of doctoring is that when you label someone as having functional symptoms, whether they do or not, “firing” them as a patient right away and referring them to a psychiatrist is unhealthy mentally. I feel the doctor should continue to monitor you while you are seeking mental stability and after consulting with the treating psychiatrist they discuss their opinions and decide where the patient should do next. I think this process would be a better outcome for everyone. A team approach. That is what I have now and it’s wonderful.

      1. I agree. My daughter had a progressive hearing loss and her audiologist, ent, psychologists they all worked together. I loved them. Until I got her approved for a cochlear implant but it made a huge difference in those crucial beginning stages that team group.

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