The doctor has come back into the hospital room or his office. He is clutching a folder of all the tests run on you. For me, it had been close to 2 years since the poking and probing had begun. The first thing he said was your brain scan came back normal some activity indicates you probably have migraines. The second thing is all your blood work came back in the normal ranges, but we will continue to do monthly blood draws to rule out Lymes disease. However, Mrs. Conroy, we did a nerve test on you, and the GOOD thing is you do not have MS, but you have a condition called Functional Neurological Disorder, and it seems yours manifests with uncontrollable movements of your body, especially and in your case is the reason why sometimes you are unable to walk or control your body tremors.
FND/FMD I have both versions (lucky me) is like if MS and Parkinsons had a baby. Part Neurologic and Part Psychological there are very few doctors in the world who specialize in FND, and they tend to fall under Neuro- Psychiatrist. An MD who is both a neurologist and a Psychiatrist (2 for 1 Special ). And now for the bad news, there is no specific treatment for FND patients because different symptoms, mine are my gait, dissociation, tremors, neuropathic pain, and pain induced seizures.
I think leaving the Dr. office was the happiest we had been for a very long time. What was happening to my body had a name and, although confusing, had an explanation. We had a dual treatment plan we had to manage the neuropathic pain, what FND in my case tells my brain OMG we are in so much pain, we are injured send help over and over again specifically to areas that I actually had a physical injury at some point in my life. So my reality is that I’m in some level of pain from the moment I wake up to the time I go to bed. I’m having a great day when my pain is around a 6 because my ears are not ringing, and my tremors/twitches are under control.
They say it makes it easier to understand and accept when you name something, but honestly, I don’t think FND understands itself. Even with a name and a clinical diagnosis, many doctors have no clue what to do when you are wheeled into the ER with multiple seizures. No one tells you that having FND, just like any chronic illness, is that treatment can sometimes be worse than the actual disease. I’ve been intubated, had a crash cart brought out because I was going into cardiac arrest. I have lost feeling in my legs during a work meeting and dropped to my knees in public. Also, it doesn’t help when you have another chronic disease that makes you potentially allergic to almost anything at any time, MCAS. We will save that one for another day.
It is not easy living in a body that hates you in a world that doesn’t even understand what you have. I had an ICU Dr. google FND because she could not understand why my vitals and test results were either all over the place or did not match the physical symptoms.
So yes, I have names for my illnesses. Yes, I have had every test medically possible. I’ have tried yoga, and if anyone suggests meditation one more time, I might karate chop them.
Yes, there is a sense of relief in receiving a diagnosis but not one that barely has any research or treatment plan. Everything for almost 4 years has been trial and error to see what works for my body.
I’ve been poked, probed, surgically dissected all in the name of managing a disease that is still a medical mystery.