Stepping back into the light...update... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Stepping back into the light...update, new dxs and lots of new directions. Long,

Daesin
Daesin

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.

12 Replies
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I read your story and initially wanted to cry at your total mishandled medical journey. But then further down your story I wanted to congratulate you on where you know are. Neurological issues are so easily dismissed or misunderstood unless there's a definite diagnosis. I have a weaving unbalanced drunk walk, with the odd curtesy thrown in 😂 Got the diagnosis FND and now every little symptom is diagnosed under the same FND umbrella.

In the medical eyes unless you find the doctor who listens, and researches our symptoms and becomes our advocates I fear we will always be "the weird ones" "the fakers" "the it's just anxiety ones "

Good luck on your journey onward Daesin

Daesin
Daesin in reply to Dicky-ticker

Keep fighting, keep looking for someone to listen to you. If the diagnosis doesn't feel right keep fighting. I know there are people here that have been fighting for years. I feel blessed that this adventure has not taken more from me than it has. and yes, I'm well aware of the fact that it's not over. I'm still on the roller coaster.

Sending hugs your way.

Blessings to all.

Thank you for sharing this story!! I’m glad you finally found someone willing to listen and take the time to actually look into the details.

YAY - I am so happy to read this, Daesin. Medically induced PTSD is all too familiar to me but I was advised to think of it as 'a sane response to an insane situation', which helped a lot. I don't have FND either but, like you, I do have convergence insufficiency (from birth). I'm glad your new doc listened and reacted the way he did. Maybe next time you contact him you could ask him what the internationally recognised criteria for an FND/Conversion Disorder/Core Psychiatric Disorder dx are, cos I can't find them anywhere.

eviedotty
eviedotty in reply to 210272

there is online a diagnostic procedure for FND which in my case was not followed by the Neurologist but my own GP doctor did all the tests and corrected what needed to be corrected and also checked what needed to be checked.

when I alerted the Neurologist to the fact this had not been followed they then said they would downgrade the diagnosis to an opinion rather than a diagnosis but a diagnosis is based firstly on an opinion then confirmed by testing and so it is for me still not good enough and considering they literally have your life in their hands for me I find it quite scary

Thank you. I have a lot of questions for the doc I'll add that to the list.

As to the PTSD, how am I supposed to get over this reaction? When the very thought of walking into a doctor's office blows my blood pressure into stroke level 190s/120s and makes me want to rip my skin off or your face off to get back to my house? (heightened fight or flight) Yes, this is definitely going to be a challenge. One of many new challenges and still some of the old, but not so favorites. Hate the vicious room spins. UGH!

Funny about the convergence. I have a congenital misalignment with right eye diving in towards the nose. Now the left eye dips in and the right eye is straight. Just throws me completely off. I brought several pictures in to show the ophthalmologist and neuro. They were surprised. But until this guy they were almost all willing to drop it in the crazy pile.

Funny little bit....doctors are taught that if you hear hooves in the forest you think horses not zebras. KISS....keep it simple stupid, go with the easiest solution. However, because this guy sees the 1%, the weird cases, the ones that don't fit into the box he often meets zebras. So he asked me what kind of zebra I was. A black one with white stripes, or a white one with black stripes? My response was Emerald green with Sunshine yellow stripes. I made him laugh.

Blessings to all.

Your story is so inspiring and thank you for sharing it. I am myself fighting the FND diagnosis as it just doesnt fit and the reason it doesnt fit at its most simplest is this...I have cavernomas in my brain they show up on an MRI and fully explain all my symptoms so I have always felt I dont have to think about stuff as the doctors had it covered and therefore I had no stress over my medical issues in short I always felt safe...

Now things get a bit difficult for my Neurologist because all the drugs he had tried on his list worked but my body had a poor response in respect of side effects and so he felt the best thing to do was to let the FND doctor check me over.....

We are now at the 2nd stage of an investigation in the complaints procedure and the FND doctor called me just this week and told me this

....I cant in all consciousness take the FND off your medical records because for all you are telling me that a dystonia event happened in the waiting area and that it was attended to by both your main family caregiver and the clinic nursing staff...I MYSELF DID NOT SEE THE START OF IT and so cannot say in all consciousness say that this is what happened.!!!!

Meantime healthwise...I got some research that was shared with my Neurologist and not well received and I will just leave that statement there...it is the main treatment for dystonia in America like OMG the size of the country! and the medical expertise in the country of that size!!!!

So I put myself on a 10 week program with no more support than my local pharmacy who did encourage me once the success was shown to try again with the Neurologist to get him to listen ...but he didnt...I had typed weekly updates from my journal and emailed them into the respective doctors of my medical team. Now my own GP doctor was jumping up and down excited at the success but the Neurologist asked me to please stop sending in the journal sheets before the 10 weeks was up telling me he didnt need to read them...

I have achieved more than I ever dared to dream success with this program and my own GP did a rake of testing that should have been done by the FND doctor and wasnt ...she found a number of deficits and corrected them with prescribed meds and she observed a curve in my spine and did the referral for that as well given I have a history of cancer and 3 cavernomas in my brain both know to migrate to the spine area and so this was checked out and found to be clear....so all in all the best news ever in short and here comes the...BIT...now I have the FND on my record I cant get life saving treatment for respiratory and cardiac distress that is brought on by dystonia episodes and so the FND while it remains on record does and will continue to be a potential threat to life in respect of treatment required

I have had the ED complaint heard and upheld with a red alert on my ED file meaning that the doctor must use the care plan provided if am brought in by ambulance but the FND now supersedes any other diagnosis so it has to go and am now onto a 2nd stage investigation against the Neurology Dept to get this off my records before having it there kills me as although the ED doctors will do the care plan they will delay it on arrival while they attempt to get me to admit that I am a closet drug user or have severe mental health for which I need medicating or that I have some anxiety that has caused an FND flare up and I am to go through all of this not being able to breathe and having seizures brought on by low oxygen levels before they will do the hospital only licensed treatment...

So I second that if it dont fit ...then dont wear it...it may just almost kill you before someone pays any attention to this

My heart breaks for you because I know what you're going through. I wish I could say that this wasn't an unusual path.

This abuse is part of why I now have the post-traumatic when it comes to doctors. I don't trust them. I'm so terrified when I know that I have to go see one. I'm okay with my chiro, he is awesome and I leave without a headache. My PT/ physio was always on my side. She helped me through a broken shoulder years back. But it's terrible when you can't trust your medical system.

I can give you this little bit of Hope, keep pushing keep pushing keep pushing because there will be a doctor there will be someone that finally sees you and goes "oh, you're a zebra I see now."

Sending hugs lots of prayers your way.

Blessings to you all.

eviedotty
eviedotty in reply to Daesin

I have been told by my own GP Doctor on the phone that I have medical PTSD...I am overdue blood tests and cant go as even talking to the reception staff or nurses and I have a major anxiety attack...I have never had anxiety in my life and it feels like the most unwell I have ever felt and am just going to put it out there ...I never felt this bad going through chemotherapy for breast cancer I have never felt this fear in the very many times that dystonia has put me in the hands of the arrest team I have always always felt 100% safe around doctors but not anymore and to top it all I have been unwell this week and the one doctor I can talk to but just on the phone I dont want any doctors out at my house !...this week she is caring for me by phone with what is looking like a bleed on the brain from one of the 3 cavernomas I have...I had a significant bleed before and I have had smaller blood leaks and I have the same symptoms and am now on day 7 with this and have not been to the hospital as am too scared for the bullying around the FND diagnosis. The last trips to the hospital were around the corona virus and they called it out as FND and I had coughed up a blood clot and was coughing up fresh blood in the mucus from my lungs so this is bad and I know it is but I dont trust the doctors anymore to keep me alive so am at home and doing the best I can without going to the doctors...sorry for the rant but I desperately need this complaint to be heard and upheld on my behalf...event then I dont know how I will be and there is no point in talking to a therapist bcs you are essentially talking to a colleague of the doctor who did this to me...its all such a mess...

I hope that you find someone who will get you the help that you need. It is horrible to be thrown into that black hole.

Sending positive energy and lots of hugs your way.

Hi, having read your new diagnosis and your relief at being heard and told you are not crazy. I would just like to point out those of us diagnosed with FND (correctly or incorrectly) are in no way crazy either - FND is a real medical term which relates to real physical symptoms that have to be managed ultimately by the individual, just like hundreds of other Neurological conditions of which the medical profession is incapable of curing.

That said, I have watched 2 documentaries in the UK sometime ago, which focused on long term disabling issues 1) a young mum with recurring excruciating painful migraines which occurred so frequently her husband had to take a night job just to keep the house and kids going. 2) a middle aged guy with severe back pain that he was taking dangerous amounts of drugs to control even his basic life. Both of these people it turned out had incidents in their lives where they had injuries, the mum a car crash whiplash when 15 yrs and guy broken jaw when in his 20's - they healed perfectly fine at the time but were suffering from long term compensatory bad posture caused by these previous events, and therefore triggering the unbearable symptoms.

This put me in mind of your broken shoulder you mentioned? Yes, I know you have had loads of physio and observation from medical professionals but all our body parts are very delicately interconnected- have they considered the shoulder as a possible pressure trigger point for your neck/head nervous system and resulting migraines in addition to the obvious issue with your eyes?

Because I am assuming your eye problems have been there long before your migraine symptoms started?

Search for the calm in the storm.

You're absolutely right. I should have used the proper terminology. Having a core psychiatric issue such as fnd does not make you crazy. It makes you FEEL crazy. And being told that you have it when you don't makes you feel crazier. Individuals who have this diagnosis -- or have been given this diagnosis when it does not fit -- are damaged in a psychological way. Either way it hurts and it's severely affects the way you live your life. I do apologize for using the wrong terminology, It was not my intention to inflict any harm or add to the stigma that we face everyday.

Yes, the misalignment of the eye was a congenital issue. However the misalignment changed drastically from what I was used to since the vertigo started. Which is not something that typically happens. Surprise! The convergence issue is something brand new. The migraine started when I was very little. Before I was probably 10 years old. I always remember seeing the sparkles and having bad headaches.

I do believe that the medical PTSD has a seed with the broken shoulder. Due to the fact that I had to fight the insurance company for so long. I had doctors that were telling me that I had multiple fractures & nerve impingements plus the brachial plexus damage which would require multiple surgeries/treatments/rehab. Add that to the fact that to this day I still incur daily pain & limitations because I have not had the corrective treatment. Though that is partially my choice. I see no point in having a surgery that will take 18 months to rehab and the five-year Outlook is only 20% positive. That's a whole nother rant.

I was not a math major but those numbers are just not in my favor. With that being their first step I'm not interested in anything else they offer. I might check back in another 5 or 10 years.

Chiropractic and physical therapy have worked to keep me in line. (That's a full-time job.) You are absolutely right that if any part of our body becomes off-kilter there are cascading effects throughout the rest of our body. We may not even notice that ourselves but a specialist in that field will see it. You bring up a wonderful point.

I have learned that with the migraines I am the owner of a hypersensitive central nervous system. I've always known that I was chemically sensitive but I didn't realize that it was in my brain as well. I had just never put those points together. I can't use strong soaps, I don't like strong scents such as perfume or detergents or cleaning products. I never even realized that having a migraine with an aura was that big of a deal. I've had them on my life and pretty much all of my sisters did my dad did my aunt did. It was just something you dealt with. If you started to get a headache you went to your room and everybody left you alone. If someone said they had a bad headache, or a sick headache you left them alone. It never struck me that I should go get a doctor over a headache.

Now I know that migraines can present in many different ways. Like without head pain! Who would have thought? And with the vertigo and vestibular symptoms popping up at the same time as the migraines hitting really hard it did look very much like FND. I didn't fit into the regular box. so the neurologist instead of saying I don't know put me into the fnd box. Had I not fought that DX I would still be there and not getting the care that I needed. I could have spent years with the wrong treatment. I can only imagine that my anxiety and depression would have increased drastically. I was in a dark place for a while and I think it would have only gotten darker.

I had to fight and I had to go through a lot of doctors. I was labeled a drug addict I was labeled a drug seeker I was told that I had psychiatric issues. I was dismissed from neurology being told that I had a psychiatric issues and didn't need a neurologist. I was told I was perfect by my ear nose and throat guy.... ironically the room was spinning as he said that. I drove 4 hours to see doctors ...he told me that I was stressed out.

I have lost my job, my career, My independence and a lot of my self-esteem. I'm trying very hard to define myself & to figure out how I'm going to fit in this world again. Trying very hard to heal. Now that I know the name of my dragon I can slay him.

Anybody know how to taxidermy? ;-)

I'm going to earn my saint George badge.

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