My symptoms started 11 years ago. It started with a kidney infection that seemed to move every part of my body. My back hurt so bad I had to be helped up, so they had my kidneys looked at, showed nothing. Then the abdominal and throat pain started, CT and Oesophagus test showed nothing. Migraines proceeded to get worse and then the tremors/shrieks began. Also, the sliding of the left foot, which led to hardly walking frontwards at all (bizarre thing was, I could walk backwards no problem). Had several MRI scans which showed nothing.
Fatigue was the worst. My neurologist was convinced that there was something wrong but he could not find it, so sent me to a neurologist that specializes in muscle disorders. This guy had me and my parents in tears, he said it was all stress and he couldn’t help me. It was horrible. I continued with physical therapy in which he was convinced I’d had a mini stroke. He was able to help and taught me to walk again, and gain control of my shakes.
I’d been out on disability for around 6 to 8 months. They said they wouldn’t cover anymore since nothing could be proven wrong with me.
It was a struggle for months but I eventually pulled out of it and could store the walking sticks and wheel chair away. In these past 11 years, I’ve struggled with various symptoms and have been to the doctor many times. No tests really show anything wrong, just a little low on b12 and iron. The pain that is in my legs and arms is unexplainable.
I was finally diagnosed with Functional Movement Disorder a couple of weeks ago, because everything is back from 11 years ago. I’ve started the physical therapy and have yet to receive the cognitive behaviour therapy appointment. I have a hard time believing that it is trauma related, but am willing to talk to this other therapist.
I just think we all must have other things in common: EBV, b12 deficiency, shingles, flu shot prior to the onset of the disorder?
Thanks for creating this site and wishes of good health to you,
Another success story, I am so pleased you were one of the lucky ones though I can tell it must have taken such a lot of time, and energy to pull yourself back.
I also believe it possible there may be some connection along the way, that all of us may have a common denominator.
I had glandular fever as a child, I also had a flu shot in the December before I went downhill in 2012. It is possible, as I see we both had a flu shot, and I have read of others having the glandular fever. A lot of people are also low in B12, but I have taken multivitamins for years with iron so have never been short of my vitamins.
I hope we stay in contact, I will be looking to do a survey in the coming years for my degree, and I hope to find the things that link us all together.
Andrea 🙂 x