Functional Neurological Disorder or Conversion Disorder
I have battled a health issue for six years with no diagnosis, just endless symptoms, and doctor visits. The symptoms are debilitating, but the worse part is they come and go like the wind. One minute I feel good and the next minute I feel awful. One-minute functioning and the next minute dysfunctioning. I minute normal and the next abnormal.
The doctor visits were intense. I saw over 45 doctors in the past six years. The doctors would talk to you and do all types of tests – brain tests, MRI’s, MRA”s inner ear tests, heart, lungs, knee and hip specialist, blood clot specialist, blood pressure, toxicology, EEG’s, EMG’s, anxiety exams, depression exams, etc. The doctors were from the best medical centers in the world – Mayo Clinic and Vanderbilt. They did not find anything wrong with me except anxiety and depression. All you need is a pill, and you will be better. The best line from the doctors was just wait until it manifests itself. Really, I am trying to live!
Of course, I am going to be anxious and depressed. Duh! I am falling backwards thousands of times and bless the Lord that I have hit the ground only ten times. I lose words, and I can not say what is on my mind. The sunlight shuts me down, making me retreat into myself. I close my eyes, and I cannot function. I fall left to right wobbling. These are daily occurrences. There are so many other symptoms that happen sporadically. I find it amusing the funny situations that I have experienced in the past six years.
For two years, the only disease that was close to my symptoms was Progressive Supranuclear Palsy (PSP). This is an undiagnosed disease that eats away at you until you die. No one says you have it until the end when you cannot walk, talk, or eat. They autopsy you to see your tau proteins bunched up on your brain. Yes, you had PSP. Wow! How nice! My adamant supporter, Smart Girl did not think I had it because I was not getting weaker physically, and I did not have a Parkinsonian look, which is present in PSP. When this is the only disease that fits all your symptoms, it is hard not to latch on to this disease. Gosh, I want to put a name to it. I want to know what is wrong with me. I want to be in control. Control of what? PSP is a killer. PSP is an ugly death. PSP is not merciful. PSP is painful. PSP is torture.
Last week (June 2020), my adamant supporter or I call her Smart Girl located Functional Neurological Disorder. What is that? I have never heard of that disorder. I do not remember any doctor, including many neurologists, mention it to me. They never even suggested it was a possibility.
What is Functional Neurological Disorder?
Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke.
What are the symptoms?
FND patients can experience a wide range and combination of symptoms that are physical, sensory and/or cognitive. The most common include:
Motor dysfunction
• Functional limb weakness/paralysis
• Functional movement disorders; including tremor, spasms (dystonia), jerky movements (myoclonus) and problems walking (gait disorder)
• Functional speech symptoms; including whispering speech (dysphonia), slurred or stuttering speech
Sensory dysfunction
• Functional sensory disturbance includes altered sensation; e.g. numbness, tingling or pain in the face, torso or limbs. This often occurs on one side of the body
• Functional visual symptoms; including loss of vision or double vision
Episodes of altered awareness
• Dissociative (non-epileptic) seizures, blackouts and faints: these symptoms can overlap and can look like epileptic seizures or faints (syncope)
Symptoms often fluctuate and may vary from day to day or be present all the time. Some patients with FND may experience substantial or even complete remission followed by sudden relapses of symptoms.
Other physical and psychological symptoms are commonly experienced by patients with FND but may not be present. These include: chronic pains, fatigue, sleep problems, memory symptoms, bowel and bladder symptoms, anxiety and depression.
Yes, I have many of those symptoms, and they come and go. Is this a real disorder or just a junk drawer for people who are messed up, but there is no diagnosis for me yet? I do not care. I rather think I have FND (live) versus PSP (die).
Is there a treatment?
Yes, I have new doctors to see and new treatments to try – CBT and ACT. I must be more self-aware of what triggers my symptoms. I must learn techniques to reset myself once symptoms start. My favorite is when I cannot pronounce words or get them out of my mouth then sing a song. I sing “Everyday with Jesus,” and then I can pronounce the word or get it out of my mouth. How wonderful is that! In one week, we have found one reset. How exciting. Now, I am looking for triggers to stop symptoms before they happen and for reset techniques to get me back to normal as soon as possible.
Praise
I praise God for the blessing in my life. In the past two weeks, God put Smart Girl in my life. She found this disorder, she made me aware of the disorder, and she helped me with the first symptom reset. Two, the Lord gave me hope and endurance. The Lord gave me the will to enjoy each day and to live. Thank you, God!