7 years ago I was evaluated by a neuro ophthalmologist due to a detached retina and sudden vision loss. My retinalogist noticed some lesions on my brain in the MRI and suggested I see a neurologist. He found them “insignificant” but due to my sudden vision loss sent me for evaluation. I ended up at an immunologist who ordered a massive amount of blood work. After review I was asked back for a consultation. He then told me after process of elimination he decided to dx me with Fibromyalgia. He also stated I had 7 out of 8 indicators for MS. Not enough for a positive dx.
All bloodwork pointed to a high level if Epstein Barr virus as well.
Now 7 years later and after fatigue, left side pain in my arm and leg. Numbness in my hand burning pain in my back and hip. Weakness in my legs and ankle. My legs feel like I’ve stepped in concrete most of the time. I have vision distortion and dizziness. Skin issues, rash sensitivity to sun on my arms and legs.
My provider is once again sending me to the neurologist and requesting a head MRI. I’m so tired of all the evaluation and no answers. I’m tired of being treated like I’m faking not feeling good. I’ve aged 25 years in the last 10.
Has anyone else had this much trouble with getting a diagnosis? Any suggestions on how to deal with this ?