How Long My M.E. Diagnosis Took

A friend asked me how long I waited to see a doctor once I knew something was wrong. I actually saw a doctor immediately. Since my M.E. was triggered by a virus, I had already gone to my GP about the virus that I had in early 2020 aka the start of COVID.

It seemed like my virus was sticking around for quite a long time, but that isn't unusual for me. Around the same time, Daniel and I moved into our house. I was too weak and breathless to help with very much. That seemed a little wierd because I had been exercising regularly and thought I should have been stronger than I felt. Still, I wrote it off as part of the virus. Then the dizziness started.

Out of all my symptoms, the dizziness was what concerned my GP. She was able to rule out a few things, and sent me to an audiologist about possible Meniere's Disease. Even though I had dizziness and tinnitus, my inner ear was fine and one more thing was ruled out.

The next step was a brain MRI. The results showed lesions on my brain, pointing to likely Multiple Sclerosis. M.S. and M.E. have a lot of overlapping symptoms, such as fatigue, brain fog, dizziness, nausea, and more. I was sent to a very unhelpful neurologist who told me the lesions could have occurred at any time in my life so we would need to wait 6 months and then do another MRI as well as a lumbar puncture. Thus began the 1.5 years when I thought I had M.S.

Eventually the neurologist said he didn't think it was M.S. due to a lack of new lesions on my brain. Technically that was good news, but I was still sick and no closer to knowing what was happening to me. Luckily Daniel attends all of my appointments with me¹ and began pressing the neurologist for anything that might help me. The neurologist finally said my symptoms fit M.E. and recommended a rheumatologist to see.

A few months later we met with a very thorough rheumatologist who took my medical history, asked a lot of questions about my symptoms, and examined me. He determined that I had a classic case of M.E. After 2 years we had an answer. The bad news was that due to my age and the length of time I had been sick, I was unlikely to get better. I later found out that only approximately 5% of people with M.E. completely recover.

Even though I had been seeing doctors regularly since my original virus, it still took 2 years to get a diagnosis. Luckily I had a GP who believed me and was willing to keep referring me to specialists until I had a diagnosis. I dealt with other doctors along the way who didn't believe me and told me it could be all in my head. People shouldn't have to fight so hard to be believed and get help, but that's how it is currently. All I can say is that if you think something is wrong, keep trying. I know how difficult (and expensive) that can be, but if you're able to it is worthwhile. And if a doctor says that something is in your mind instead of doing any tests, ask them what they ruled out, how they ruled it out, and to update your record with that information.

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¹ If you're comfortable, I recommend bringing someone to medical appointments with you, especially if you experience brain fog or any other cognitive issues. It helps to have an additional person to ask questions, remember answers, and give their perspective on your symptoms.