Today was a follow up with my neurologist. As I have been hospitalized and had several tests done it was expected that we would review things today. Well, uhm, no.That isn't quite how it happened.
Neuro began asking me about what had happened as he read through the chart. He did not have the records from the hospital. When I said that I disagreed with the doctor at the hospital because he said this was stress based. The neurologist literally closed his laptop, spun to face me and said I am a neurologist. I can't help. You need a psychiatrist. When I asked him which symptoms were covered by this functional and which were caused by organic issues....he said you need a psychiatrist. Everything I asked, every question asked ended in his response of ....you need to see a psychiatrist.
I then mention that I had seen an optho neurologist who had expressed concern over my optic nerve being irritated. He said the diplopia, the blurriness and a lot of the discoordination and balance issues were probably because my eyes are misaligned. Optho even mentioned I am still positive bppv ( this began Sep of 2019) so would that be covered in the conversion pile? Dead silence.
Okay, I can concede that a few of these symptoms could easily be considered the conversion or fnd. But I am not so good that I can fake nystagmus. Or a lifetime of migraines? I'm just not that good.
Now the neuro starts to backpedal and wants to see the reports and the test results afterall. I repeated his words back 'as a neurologist there isn't anything I can do for you." He seriously wanted me to set up a follow-up appointment. I'm not that crazy!
I tried to explain to my husband that this dx has such a stigma, such a blackness that I will never be taken seriously by any other practitioner. He told me that I am just really hurt right now and not everyone is going to have that opinion and philosophy. Yet I have already experienced this many times. I am so disappointed and sad. Yet I keep twitching.
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Daesin
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I totally relate to how you are feeling let yourself feel dissappointed and sad for a while it has to move through your system so it doesn’t turn into despair and then get back up and we keep moving forward - these doctors genuinely don’t know the Field of neuro psychiatry - to your point it’s probably both. It sounds like he is so challenging to talk to that it would be better to find someone else that is at least more gentle - I’m starting to give up on the conventional medicine route anyways - check out feldenkreis audio recordings for the eyes and the book the “brain that heals itself” author of the one that wrote brain that changes itself I’m listening to it on audio
I am sad but not surprised and congratulate you for pulling the situation around as well as you did. I'd ask to see a different neurologist and avoid psychiatrists who have specialism bias so you'd run the risk of having the psych diagnosis confirmed.
Doctors need to go back to school to learn how to be kind. I don't have FND but I've been living without a thyroid and developed Psoriatic Arthritis that has brought my life to a stand still. Doctors are just rude to the patients and every issue you bring up resorts to you "especially being a female " needing to see a psychologist, they need to see a psychologist!
Why do these docs and specialists do that?? as soon as they see report of fnd or as soon as a family member mention fnd you literally see the physical change in the doctor as if the symptom told to the doc that you're there to see them about is psychological. Eg. I get earaches and inner ear infections often which cause my eardrum to balloon and leads to vertigo and migraines which i used to get antibiotics for. Now the same clinic that used to treat me for this dont even check my ears, they just say its a virus. I have to ask them to check my ears and its as though they have to convince themselves that what they are seeing is right. Thats just one example. Its so frustrating and damaging to our psychy. Gets me so depressed and not wanting to go to docs or hospital anymore.
I'm sorry for what you're going through and I can relate. My first neurologist after I told him my symptoms are getting worse said my numbers are good keep up the good work. The next when I didn't fit in his boxes told me if I lost weight I'd get better. Sense I'd already dropped a good amount of weight I know I that I wouldn't be seeing him again. My current neurologist finely figure it out fnd. Although as a mom I was a furious advcoated for my kids but not so much for myself. I'm leaning to speak up and not let the naysayers get into my head. Please hang in there
Thank you for all of the encouragement. It makes it somewhat easier to know that I'm not the only one. Sad, but a bit easier.
Now let's add another level of craziness to this wicked stew of what in the world is going on. Primary called me to let me know that she had fully reviewed the charts from the hospital visit and no where did they mention stress. It was actually encouraging further evaluations for MS. ??????? Do What?
He showed me a full MRI...full head and all the way to broken tailbone. One black spot and minor arthritis were the only unexpected anomalies. He specifically said no demylention anywhere and wished his MRI was as clear. It was his next sentence that I fell apart on. That's when he said this was stess related, fnd he said. I had never heard hose words together before. When he said it is also called conversion disorder, well that word I knew.
So yes, okay, I was a little beside myself when I had the conversation with the doctor. It is possible that I misconstrued what he said in my heightened emotional state. However, he spoke to my husband and specifically told my husband that I had fnd. He told my husband that it was genuine, that I wasn't controlling this, how it needed to be handled and what a good team would look like.
I absolutely know that he pulled MS off the table. Because during my engagement with him I did say that it was not a total waste of time and I was thankful that they had cleared Ms and all other demylention processes off the table. I thanked him for that information, but I told him he was dead wrong on the rest.
So my primary and I are now confused as to why he would say one thing and write something completely different down. So she is sending my full file to a different neurologist for review. In the meantime I have opted to work with a therapist because this entire process is making me crazy.
After our phone call my Primary called the hospital and asked for clarification, they sent her an addendum which mentioned stress but did not use the words conversion or functional. She is not comfortable putting that dx on my file and will not until a neurologist does. Love her. She is aware the damage this dx could do for my future medical care.
I am so lost. I know I didn't create the conversation..thank God I called my hubby. At least he heard the same thing. This world is so upside down. I am not this flavor of crazy. How do I get off this ride?
Hey Daesin. That sounds truly awful what you are going through. I had the same sequence before my fnd diagnosis, with the shell shocked neuros, MS symptoms, clear MRIs and the eventual psychiatrists sent in to see me as I was twitching and stuck in a wheelchair. (Thankfully I have recovered)
Have you considered going to see a skilled naturopath? All my fnd and anf symptoms were really caused by a stressor, which for me was bacterial overgrowth, parasites and a badly weakened immune system. What this did was cause a whole lot of inflammation throughout the body, which stressed it to the max, and led to paralysis and the eventual fnd diagnosis (which is a doctors word for "I don't know")
I'm no expert at all but it could be as simple as finding your stressor and trying to fix that right from the core. From my experience, just stepping out of the traditional healthcare system could be a good idea, because; 1. They all think we're crazy, and 2. They have no idea what they're talking about, which leads them straight back to point 1. It could save a lot of stress and anxiety, because at the end of the day, if they can't help you, they are just going to prescribe you some anti stress, anti anxiety, possibly opiate medication while the hell that's wreaking havoc on your body continues, and you'll really be in a bad mental state that way, never mind physical. I'd advise maybe looking at alternative options, (maybe naturopathic or herbal specialists or doctors) if you haven't already started doing so, because that was really a saviour for me when I was down in the dumps.
PS I saw about 10 different doctors and specialists. EVEN A COUPLE GUT SPECIALISTS FOR A GUT ISSUE! And they all gently told me to p*ss off too, so I really sympathise on that point
If only 'FND' *was* doctor speak for 'I don't know' things would be OK. But it isn't, it's doctor speak for 'you have a core psychiatric disorder and it's very common.' *Sigh*
Try carnivore for 30 days, see if anything improves. There's really nothing to lose at this stage. Am doing it now and I'm heaps better than I've ever been
I with you all the way. When you have the right diagnosis for your debilitating symptoms you will accept it. Until then...🤷🏼♀️
If you take a look at this new research paper you will see how long some biomedical conditions take to diagnose and how many of us are fobbed off initially by misleading psych/ non organic diagnoses. X
This is so aggravating! The arrogance! I am sorry you had to go through this. Stay the course and stand up for yourself and your medical care. We are with you :(.
It sounds like you need to see a new neurologist. It doesn't sound like he was receptive to you at the beginning. I've noticed, between all our doctor visits, that the doctors just don't know enough about this. Most have never had any patients with FND, so it makes sense that they don't have the answers. Try to find a neurologist who has some experience with your symptoms. I was told to try The Cleveland Clinic is Mayo did work for my daughter. I assume Cleveland Clinic would also be able to help adults. The doctors as the pain clinic aren't really treating her for FND, but they are helping her deal with her pain which positively affects the FND. She is incredibly better - not back to 100% but we are glad she is in the program. You may have to think outside the box - like a pain clinic- because there are probably very few doctors who specialize in just FND. Good luck to you. Don't give up.
Have you heard of episodic ataxia? Is it possible you may have this? It could account for most of your symptoms but you need to find a neuro who knows about these disorders. One of the triggers is stress.
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Questions for Dr Jon Stone
Is it FND? Do I have rights to request other elimination tests?
So confused with this diagnosis
FMD Relapse is worse than the first time. 
