Is there anyone else being diagnosed with FND and can't get help?

Amazing combo. of problems! I have A-Fib, but not a hole, in my heart, or ablation, and I have problems with an artery pressing in on the medulla oblongata, that was a birth defect. I have cranial nerve symptoms, from the artery problem. Thankfully, at this point, I don’t have syncope! My A-Fib problem has not been treated yet, by physicians, and I am currently wearing a halter monitor device. The neurosurgeon and neurologist tell me that they cannot fix my brain/artery problem, because it’s too near the conscious center, of the brain, so, even if they successfully fixed that problem, I may not regain consciousness, and would be alive, like a vegetable. The risk is high, so I just have to live with a plethora of symptoms! Good luck! I’m sorry that you have these problems, and can’t seem to get good answers, from medical personnel, that could or would help you! It’s tough dealing with neurological deficits, and I sure can empathize with how you are feeling right now! Wishing you the best!

Thank you for understanding. And the information on the medulla oblongata not a thing they can fix. I was reading the same thing from the internet and I use the website called justask and the doctors there give me lots of information to help me understand what is going on and what can be done or not. They telling me that only the symptoms can be treated to help try to control some of it but I'm still hopeful that they can help fix it.

Keep on keeping on, as the saying goes, and try to cope with symptoms the best you can! I have found that not dwelling on what I may not be able to do, like a normal person, and, instead, concentrating on what I can do, is helpful! As my wife always says, “would of, should of, and could of’s, don’t count!” Wishing you the best!

What are some of your symptoms? I have an artery compressing my medulla and have lots of things that i think are associated but my doctor said it is nothing that can cause symptoms. I have been looking into surgery for this, but sounds like it might not be a possibility. They told me I had fnd before when i was in the er. I think it's a catch all when people don't know.

I have low blood pressure, high heart rate, vision loss in my right eye, syncope daily, keep having stroke symptoms, unconsciousness and more. Er says FND. But home neurology and cardiology says it's the brain but it is not FND. Also my psychiatrist says I don't have FND. And if it is not a psychiatrist diagnosing FND then they are out of there field of medicine. FND is a psychological problem, not a physical problem. So they don't want to look for what is wrong because it's not an easy case they say FND(crazy). But FND does not cause physical damage just symptoms.

I am showing damage in my brain because they have let this go on for to long now without figuring out what is really wrong.

My own personal opinion is that FND is a label put on some patients, unfairly. My symptoms were very subtle, but enough to cause me problems. I was extremely lucky, in that I had, most likely, the best neurologist in the large Metropolitan City, with lots of suburbs, that I lived in! This neurologist went over me with a pin, checking for numbness patches, of which there were a few. She researched and put me through a CAT scan etc. This all occurred years ago, when I was a young man, in my 30’s. My balance was slightly off, and I had an ataxic gait. My voice got hoarse, after singing or speaking for a long time. Sometimes I felt a bit drowsy, and to compensate, I drank a lot of coffee, with caffeine. At times, my coordination was not the best. So, at first, the neurologist gave me the diagnosis of possible Multiple Sclerosis. After about 2 years, when my symptoms, like hand tremors, were getting worse, the neurologist admitted me to hospital, for about a week, for tests, etc. An MRI showed that something seemed to be pressing in on the Medulla, at the cerebelllar pontine angle. So, my neurologist referred me to the best Neurosurgeon in the city, who also happened to be the Chief of Neurosurgery, at a well respected University. At first, the neurosurgeon thought it could be a brain tumor. So, he and a younger neurosurgeon decided to plan on an operation. First, though, they decided to have me undergo an angiogram. Surprisingly, the angiogram revealed the artery pressing in on the medulla/brain stem. After deciding against operating, I was prescribed blood pressure medicines, to keep my blood pressure in check. I still have mild symptoms, and have adjusted to just dealing with the condition. I’m near 80 years old, and still doing ok, so I guess it was a good thing, that I didn’t undergo a brain operation. My current neurologist says that my most recent MRI does not show an artery pressing in on my brainstem. He suggested that I have another angiogram, but I am reluctant to go through that painful procedure, again! Hope my story helps you to feel a little better about having your condition, and dealing with it! My neurosurgeon stated that my particular condition is very rare to encounter!

It's good that you had someone that helped you. Me on the other hand am getting more damage to different places in my brain. Like my A1 segments have disappeared in the past three years and some punctate white matter signal changes and some chronic microangiopathic ischemic changes.

I’m so sorry to hear that you don’t feel that you are getting the care that you need! Harvard trained neurosurgeons helped me the most! The Harvard Neurosurgery protocol, in teaching, and having well trained graduates, has a great reputation! Wishing you the best!