Neuro or psych? The adventure continues.

[Daesin]

I spoke with psych today who does not believe that all of my issues are non-organic.I have to say I agree. She is not willing to list a diagnosis of Fnd or CD at this time. I expressed her my concern that this is a black hole diagnosis and she agrees. As does my primary.

We did agree that there is PTSD from the medical field's response and treatment during this adventure. That whole trip to Indianapolis is still quite a hole in my heart. Anyhow, She has also recognized major depression and generalized anxiety. I appreciate that she listens to me and is not willing to throw me down into that quagmire. She believes this is neurological in part.

So now we get a fresh set of eyes from a neuro standpoint at an appointment next month. I am terrified of this neuro, what could happen, how badly this could go ....its part of my reaction to past medical trauma. I don't want to talk to anyone medical or go anywhere near an office..., I wonder why.

She reminded me of the fact that I have to go back to physical therapy. I have to go back and re-engage needed services in order to heal. I asked if we can do this without me leaving the house but there was a pretty quick response of No. Something about telemed not covering physical therapy and chiropractic. Though I may be able to continue with her through telemed. It is so much easier to talk to her from the safety of my kitchen table.

I feel blessed that I'm still teetering on the edge. The diagnosis has not been finalized. There's still hope to get this right.

Blessings to all.

[Hidden]

My neuro did tell me that fnd can be a comorbidity to ptsd.

[Daesin in reply to Hidden]

Yes, I have read that as well. It's unfortunate how our service members are being cared for, or lack thereof.

Back on task....the real kicker is that throughout my years I have seeing things, I have been elbow deep in situations that would put most people on a crying Jag. During my service as a medic, my work at the Federal level, as a social worker, as a mom of 6.... I have seen some pretty gnarly things. Just saying.

So this really throws me for a loop ....that chronic vertigo & the medical Field's response to this constant spinning is what gives me PTSD???

I'd shake my head but that makes the room spin harder.

I have to find the silver lining. But at least now I have allies. For now at least I have support from my primary, physio and now psych. That's a great foundation. I'm more blessed than many.

[djusmc7229 in reply to Daesin]

A lot of veterans are being treated very well. I myself have been diagnosed with FND (it took a trip to the Mayo Clinic in Minnesota). I am fortunate that I retired from the Marine Corps, so I can use both the VA and my Tricare insurance. My doc at the VA is very good at taking in my out of VA diagnosis's. She was able to get me a power wheelchair and takes very good care of me. I am currently waiting for and in person appointment with my new psychiatrist. I've had a telephone appointment with him. He is very receptive to what I say. Every veteran I know out here has had very good experiences with the VA care. It truly depends on what VA you go too. The VA as a whole has been inundated with more patients than they have staff and funding for. The VA was never designed to treat all veterans. It was designed to treat service connected disabilities. End of rant.

The VA is being very helpful with my FND. They have assigned me a psychiatrist, physical therapy, occupational therapy, and a neurologist. They quickly agreed to treat my FND even though it was diagnosed by a civilian hospital. I didn't have to go through all of the exams again.

I, too, was told the FND is due to my PTSD. I am 100% disabled due to my military service.

[Daesin in reply to djusmc7229]

I am so happy to hear that you were getting the care you need from the VA. my husband and myself unfortunately have not found that same level of care and quality of service in our southern Indiana region.

I believe that when you wear those boots you deserve to be taken care of by your country.

[Numina]

I've just been diagnosed with FND, with the crappiest litter letter from the neurologist, with no explanation why or what positive findings he found. Also with no guidance on what to do next. Just a small mention of psychology. I do not know if he will refer me or if my GP will. I have sent him a letter asking all these questions and if there is a possibility my symptoms are actually dopamine deficiency related. Still yet to here from him. I guess I'll have to talk my GP soon.

It's worrying that we are being given this label, with so much doubt on the ability of a supposed professional 😔

[Brokendeer]

Hi I had years of seeing a Neurologist before I snapped and insisted on a diagnosis, because I was constantly visiting and being told by other Medical Professionals it was a Neuro problem, then being constantly told by my Neurologist that is was not Neuro!

Even when my Neurologist eventually said could be FND they were unable to explain to me what FND actually meant- signed me off their service. I had to then demand a 2nd opinion, who could give me a proper explanation, some answers and suggest treatment options. It seems mainstream Neurologists are just not interested in FND as it is not a textbook Neuro Disease like Parkinson's, MS, Cerebral Palsy etc. -They are out of their depth!

My advice (not that it is worth much) try and save yourself a lot of time, painful anxiety and money by seeking a Specialist Neurologist in FND so they can without doubt, rule it out or in! Even if it turns out to be confirmed as FND, know that there are actual physical changes that have gone on in your brain to have developed FND (ref: FND Hope Website) - it is never purely a Psych issue!

And in the UK we have Specialist Neuro Physios who deal with Stroke, Vestibular Issues - like Vertigo, MS, Parkinson's and FND - who work at getting you to achieve your own personal goals in the way that works for you, not just repetitive standard Physio exercises used for everyone in general.

Be kind to yourself, search for the calm in the storm!

[210272]

I am so relieved for you, Daesin. This psych sounds good and I am glad you are free of the FND/CD diagnosis. Unfortunately medically induced PTSD is fairly common amongst people who have been misdiagnosed as having a conversion disorder - I still get flashbacks years later but use them to remind me to stay alert about medical gaslighting and call it out when necessary. It is also very common to get a conversion disorder dx when, in fact you have a motion sensation condition.

Now I hope that they can get to the bottom of what is causing your vertigo and I know that diagnostic odyssey isn't always easy, especially when you have lost trust in doctors. While I hope your neuro appoint will help, if it doesn't and for backup, you might want to hop over to the Vestibular Disorders Association site where you'll find a list of recommended doctors but it is always worth asking around locally too. It is possible your physio would be a good source of information about who is good to see and you may need several specialisms involved (eg neuro otology, neural ophthalmology and/or audiology).

From your description of feeling worse when you move your head, it might be worth exploring visually induced dizziness (VID) as a potential diagnosis. Chronic vestibular migraine is another possibility. What you don't want is a stand alone diagnosis of triple PD (persistent postural perceptive dizziness) because it is, effectively, on the same page as FND/Conversion disorder so you could wind up back at square one. Most people I know with that diagnosis have a combination of VID and orthostatic intolerance and adaptive lenses and compression socks are their friends

[skifast]

Hell Daesin. You have to embrace what you have #1. Find a passion everyday, exercise what you can do, meditate, mindfulness,find your happy place artwork, gardening,anything to distract you. Moving your body and mind is very important! Go to You tube and check out these videos: The Hidden World of FND on Vimeo, Beyond Sport Denver University presentation for psychology dept., Seeing with Trust, 2017 Huntsman Cup Park city TV, AvenueVision. please let me know what you see in videos for your help.

Cheers Nick

[poppymom23]

In the US we have home health PT/OT services, usually for people who have difficulty getting into an outpatient clinic for PT/OT. Would that be an option where you live?