My fnd journey

Age

56

Gender

Male

Country

United States

Ethnicity

White

Bio

57 yr old mail 40 yrs Heavy Equipment operator in operating engineers local 66 Pittsburgh PA My problems neurologically started in late 80s with 5 separate occasions of Belle's palsy each lasting longer with each episode....thus of which turned after 4 yrs into an non essential blepharospasm diagnosis in mid 90s to turn into a diagnosis of generalized tic disorder....only to find the disorder starting to affect .the rest of my body starting in move into my arms and legs. Gradually onset for quite number of yrs.....in 2016 I had my first vascular intervention due to total blockage and failure in my femoral and corotid arteries , so bad they were discussing amputation of my left leg above the knee..during this intervention drs implanted 2 large medicated femoral stents.....after day and half I contracted a very severe life threatening septcis infection....drs gave a 35-40% chance to survive because of its severity......all of which was found to have been caused by rejection of med stent implants.i spent 9 mths battling septcis with over 7 more surgeries to find infection because drs failed to recognize my body rejecting their work. Overnight my body pushed a 9 inch long medicated femoral stent big as round as my thumb through the side of my knee... believe me I got pictures.....from 2016-2021 I spent a lot of my time in ICU....between the copius amounts of kydney killing antibiotics..2yrs on narcotic pain pump....the trauma of the numerous operations and botched procedures...the septcis was cleared in 2019 only due to them removing implants. fast forward to 2023 my condition deteriorated into FND diagnosis seizures myclonus episodes, severe congnitive impairment parkinsonisms, disorientation...memory loss....I have about every symptom of Ms....and Parkinson's...these symptoms only subside with heavy medications which themselves create problems navigating this disease....the drs don't seem to realize the cost I'm paying for their negligence......as patient I'm disgusted by the homage drs pay to the hospital and not the wellbeing of the patient ....we are pieces of firewood in a big firewood processing company,one after another we accept cookie cutter medical care from these so called doctors whom place hospitals bottom line above your treatment...rushed in rushed out...I've got the medical history to prove it...I have had the most nightmarish experience

medically more so since deteriorating neurologically the last 15 or 20 yrs....I am no longer able to work.....and I. May lose my ability to drive....because my condition was basically undiagnosed for over 35 yrs without treatment...my prognosis is not very good for total remission...all I can hope for is a decrease in symptom severity and hope for drs to get meds right

[ChronicJazzHands]

My FND symptoms also began after sepsis. While in the Navy, I had a severe allergic reaction on my skin, which got super infected from nasty submarine environment. My feet literally started turning black. I was pumped full of all kinds of meds for about a year and miraculously I still have my feet. About a year after that, my left hand had tremors. I woke up with left side of my body paralyzed and sent to ER, no stroke signs. Now for 5 years I've battled relapsing episodes of being unable to walk/talk, I have drop attacks, memory loss (I'll loose moments or sometimes whole days), tremors so bad I walk with a cane, and just about every symptom on the list FND has. All the while being told "it's in your head" or "it's just anxiety" by VA neurologists and doctors. It's obviously much more than that.

If you live in the US, unfortunately there is almost no infrastructure for FND here. I've found that your search for answers is better directed at how Britain is handling FND.

[Hidden in reply to ChronicJazzHands]

Thanks my friend... I appreciate your post.... It's unbelievable how narcissistic and abusive the medical system is when they don't know or can't figure out what is the reason for a patients problems......especially problems with the nervous system. It's all about money ......hospitals doctors and the insurance companies, are complicit,...in all of this......we need more doctors that treat the whole patient.....looking at all of their records..and involving all the specialists, that a person has seen. Consulting everyone....to give that patient the best medical care possible, It's criminal big medicine is killing people....and we just keep accepting it.....not any more.....it needs to be told and brought to light , we demand better care.

[Shimmyaway in reply to ChronicJazzHands]

So sorry to hear of your tribulations in searching for FND treatment. Believe me, patients in the Uk are also frustrated in their quest for successful treatment. We are probably beyond the 'it's all in your head' stage, from our clinicians, but getting treatment locally is v. difficult ..the expertise and MD teams needed are not there...only available at specialist centres, who cannot cope with demand, hence selecting the most needy. At least in the US you have Re+act, based near LA, which specialises in FND and offers training to drs throughout the US...also offering self help advice to patients. I believe they have a directory of where there is FND expertise. Keep looking, and don't give up.

[Hidden in reply to Shimmyaway]

Thanks ..much appreciated. God bless..

[Shimmyaway in reply to Hidden]

Got the name slightly wrong .. see below

You can google ..... re+active pediatric and adult functional neurological disorders program. re+active has been working with clients with Functional Neurological disorder for 12 years and specializes in an outpatient integrated approach for kids (aged 12 and above) and adults.

Best wishes

[Lady4 in reply to Shimmyaway]

Yes they too, the link is on one of my posts and hopefully the Brain Bytes Directory is growing. No UK listed ones last time I looked though.

[Lady4 in reply to ChronicJazzHands]

What US state are you?

[Lady4]

Oh wow, you have been through the mill, its crazy they never took the stents out and replaced them straight away, or found a better option, 3 yrs is ridiculous.

Medical negligence claim and private care comes to mind.

Hugs xx