Hi folks. I know it's been a while. I kinda fell into a hole and haven't been able to climb out until recently. But I return with good news!!! Grab a cup and a seat and read on.
It's funny how life can take things out of your life and put them back in play at a better time. In January of this year I was slated to meet one of the country's best neuroimmunologist. It all went sideways. I mean jacked up post-traumatic hysterical sobbing full body twitching soft restraints being told I was crazy walking out of a hospital 4 hours away from my home with only half of my possessions and not really even knowing who or where I was kind of sideways.
Yeah it was fun.
So last week (mid July) I finally have my rescheduled visit. The driver again is extremely late. We do manage to get there an hour and a half late. The doctor himself actually calls me to make sure I'm okay. That was my first indication on what kind of man this was.
He actually listened and interacted with me. Because I now had three MRIs (with and without contrast from November, January and June) plus he was able to see progressive blood work and the opinions of several other disciplines I think he figured it out.
So, it is his belief that I do NOT have FND.
I admit that I began to cry a little bit and ask him to write that in big freaking letters across my file. he asked why I had thought that and I said tha t his underling had given me that diagnosis during my trip in January to his hospital. But that I had been reassured by the same doc that I 'wasn't really faking It." He literally dropped his head and looked at the floor for a minute. I went on to explain to him the snowballs effect that this had on the treatment. How my neurologist then dismissed me without any reports from the hospital after I said the word stess. Neuro said I had a core psychiatric issue and as a neurologist I wouldnt be treated there anymore. And the nurses comment about the whining white woman's disease. And how I was fighting to get the proper care because now everyone thinks I'm just crazy and disregards every symptom I have as just conversion. I told him how offended I was at being thrown into this black hole and I truly would love for him to pull me out of it.
I further explained that I was well aware that there were anxiety and depression issues that had cropped up due to the fact that the world was spinning constantly. It's terrifying to spend weeks on end on a rollercoaster you didn't buy a ticket for. My world changed instantly and massively. I am no longer independent. I was not getting the proper assistance or adequate support from my medical care providers because they didn't know what was going until his doctor gave the 'I don't know' a name. How this was a handle which did not fit and was devastating. His dude was the main culprit. That was the base of the medically induced PTSD.
He reassured me that he did not believe that FND was the problem. He explained to me that a complex migraine explains the areas that are lit up in my brain consistently since November. It explains why the symptoms are come and go... big and small. When added to the fact that I am still extremely visually triggered by vertigo and that I have a convergence deficiency plus a misalignment in my eyes, well I am a big old ball of weird ....but not crazy.
Doc said that in thirty something years he has never seen this particular combination. He finds me interesting and rather entertaining and would love to oversee my case. I agree but strongly encouraged that unless he wanted to see me utilize my social distancing cane I should not be allowed in the same room with his underling doctor. Then I explained that my social distancing stick is not only to keep me balanced when I get a little dizzy but also to smack the hell out of anybody that gets too close to me. He kind of giggled and said he could see me doing that. Yeah, It's all fun and games till somebody gets a welt on their leg.
Despite this six month detour, it just had to be. If I had seen him in Jan. I would have had a lumbar puncture and been sent home full of questions. But because things played out the way they did.... I saw the chiropractor, optometrist, ophthalmologist , neuro opthomologist... I got cleared through the cardiologist.... I worked with the various therapist (speech, occupational, vestibular, physical)....I went to the neuropsychiatrist. I had all the information to put in front of him. There were very few pieces of the puzzle that he needed to develop himself. He wouldn't have had that in January and I would have been highly disappointed in him. Life takes things out of your life sometimes and puts them back when you really need them.
Never give up. If the diagnosis does not feel right to you don't accept it. The most convenient FND symptom is that the patient doesn't believe. If this diagnosis fits you then great! utilize the treatments out there. But if they are wrong then it won't help you.
Blessings to all.