othere Like me?

[Kunes]

i am not sure what to talk about I was hit by a car while jogging 2 years ago. I have seen 2 neurologists and neuropsychcologist, and psychologists and cardiologist. I keep getting multiple meds thrown at me. I am fed up having this. I can't drive I get dizzy and spacy, can't go to Walmart without feeling like I am spaci g out. My HR goes to 180 to 50 with my BP very high and low. I have a speech doctors called it ataxia and where I can't find my words. I feel dumb,I used to work in critical care and awesome at multitasking, I fall often getting dizzy. Are there others like me? Please tell me I am not alone? I really need guidance.

[Lecture]

I live with these symptoms you described. As you have had an accident, the question is : what is strucural and / or functional in these permanent health symptoms ?

For FND which is a diagnosis of exclusion of structural neurological symptoms , may be this text may help you :

"A diagnosis can now be made in an inclusionary manner by identifying neurological signs that are specific to FNDs without reliance on presence or absence of psychological stressors or suggestive historical clues.

The new model highlights a wider range of past sensitizing events, such as physical trauma, medical illness, or physiological/psychophysiological events.

In this model, strong ideas and expectations about these events correlate with abnormal predictions of sensory data and body-focused attention.

Neurobiological abnormalities include hypoactivation of the supplementary motor area and relative disconnection with areas that select or inhibit movements and are associated with a sense of agency. "

pubmed.ncbi.nlm.nih.gov/298...

If you consider your illness in the biopsychosocial model, the question is :

1.- What are my external and internal ressources to deal with ?

2.- What aggravate my symptoms ?

Incapacity of medical stuff to control them ?

My incapacity to control them ?

How do I deal with my anxiety to live with a reduced quality of life ?

I know , it's so difficult to live with these symptoms. It's a long, long way to accept a new way of life.

Yours

[Boeingbabe]

Dear Kunes, I am so sorry that you are suffering. It is a heavy cross you carry. It soundsike you have all the hallmarks of PoTs. Have u been tested? Are your brain scans clear? Did they check your pituitary gland? The speech issues could be as simple as perimenopause or as complex as tbi or long covid or vaccine injury or migraine related. You really need to be forensic in your approach to this. Drain your symptoms dry on paper, draw up boxes and insert all differentials. Push your care providers to rule Out dx if they cannot rule In. Push, push and push some more. You need conclusive answers to receive proper treatment. Note your meds and any side effects/ contraindications. Your pharmacist is better than your dr for this. Stay strong, keep fighting and dont loose Faith in God, who sees your suffering and cares for you. Best wishes.

[Steeler1969]

Hello, I’ve been where you are and in many ways, I still am.  Doctors, tests, meds, repeat!  It has been 7+ years since I had my accident.  It hasn’t been nor is it easy.  I’m still in the process of redefining me2.0.  It’s a tough concept to get your thoughts around but the sooner you can do this the better.  I could bore you with details but one thing I’ve learned is to get beyond the diagnosis because it’s a slippery slope.  I’m my case, I was searching for the silver bullet - that being finding a doctor who would make me who I was again.   To be honest, I still have days where I sit and hang my head, cry and clinch my fists but I keep trying, keep moving forward.  Looking back on my journey so far, yes I take medication for a variety of things but they are required.  I’ve improved because of them.  Along the way I’ve been diagnosed with a damaged pituitary gland as well as a vision impairment.  Because your post mentions things I have or am dealing with, I would suggest you seek a referral to an Endocrinologist.  The brain is a very, very complex organ and as one doctor described, what we know about the brain would fit on the tip of needle and you would still have room.  The other professional you might want to arrange to see is a Behavioural Optometrist, who will help you rule out or diagnose any visual impairments.  Once I found these folks I found my rehab efforts showed improvements - slow but forward.  Knowing exactly what impediments I had, rather than you have FND or PCS or whatever other tag, allowed the PT and OT professionals I was working with the opportunity to develop a specific plan for me.  I know that no 2 cases are the same but I went 2 years without direction.  My GP was great but admittedly he was out of his comfort zone.  He kept working tho and we scraped things together.  As a result of those efforts, I was doing a rehab exercise with a PT and I was having difficulty and she said, have you had your eyes checked out.  That was the start for me.  So while cases are not the same, you might, if you already haven’t gone down a similar path as above, find some answers which you can use to chart your own journey to define the you2.0.  Best of luck and never give up.

[Adventure_Nana]

You are not alone! In the past I had a 2 level ACDF and resection of an Ependymoma at L3. I’ve seen 3 neuros, psych and neuropsych. They even did a work up for prodromal Lewy Body Disease.

I am (was?) a pharmacist for 30 years. In the past I managed pharmacies with a staff of 100 people, I’ve opened 2 pharmacies and was the Compliance Manager for the pharmacy department of a 5 hospital system, including a large urban teaching hospital with a Level 1 Trauma Unit. Now, some days, I can’t even get it together to walk the dog and make dinner.

BUT with some work, and I honestly think that walking has made the most difference, I’m having more good days than bad. Yes, I go to therapy, and I take my medicine, but I only started to feel better when PM&R got my pain under control and I was able to start walking further (farther?). The pain doc swears that it was the surgeries that triggered FND, although 1 doc told me that it was “all in your head, you need to relax”. Having a clinician who believed in me made a huge difference! Training the dog helps too. She’s a 1 1/2yr old German Shepherd. When I’m walking and training her, I have to pay more attention to her than to myself. I’m sure that makes a difference even though I don’t know how.

Best of luck to you!

[MatthewP86]

You're not alone. Let's just say, in common tongue, your software was rocked. What happens when you drop a gadget on the floor and it starts to operate differently? You know that the software was damaged. And yes i too have unexplainable things happen to me. Like how I can work on cars, yet I have speech and motor issues.