Reading your stories

[Littlecook]

I've been reading a lot of your stories on fnd with interest, and noticed that a lot of you have had the same symptoms of my self , I've been having stroke like symptoms to the face ,mouth and speech for many years with many visits to hospital A&D under blue lights but told that I wasn't having a stroke. It's only this year that I was told that I have FND , and was put down to anxiety and my childhood days , not only do I have fnd I also suffer from Nf1 ( neurofibromatosis )sorry if the spelling in wrong that courses Neuroendocrine cancer that I've had twice and still have regular tests .

I have dizziness daily every day and this make me feel so sick ,but when I say anything to my doctor the only reply I get is you have had all the tests and its FND I can't do anything.

Why do doctors always put everything down to fnd ? .

[skeetbeet]

They are lazy, uncaring, unethical, & disregard their Duty of Care. I'd find another doctor. That's unacceptable.

[Sparklingsunshine]

Its not just FND, Its any chronic long term condition. I have Ehlers Danlos, a genetic connective tissue dysfunction and you wouldn't believe what they've tried to palm me off with. Apparently my EDS is also to blame for world hunger and the dinosaurs going extinct. Its amazing.

Once you have a "label" whether its a physical or mental health one then everything gets lumped in with that. Especially so if its a condition like chronic fatigue, FND, Fibromyalgia, because there aren't blood tests, x rays or scans that can definively diagnose it, they are diagnoses of exclusion, ie we've excluded everything else ( which is frequently untrue).

My MIL is a type 2 diabetic and reports the same. Or doctors blame your age. Its incredibly lazy, poor medical care and dangerous, because something serious could be missed. In the UK its especially common as the NHS is overworked, under resourced, doctors get like 10 minutes per patient and simply dont have time to investigate all possibilities.

[MONIREN]

I've had FND for 7yrs, constant vertigo, recently my physio checked my neck and gave me simple exercises and now not dizzy every day. She made me look to one side and got me to follow her pen to the other side. She could see by my eye movements that I was dizzy. At least one symptom sorted. I have good and bad days, just learnt not to stress the bad ones. One day at a time. Take care. Moni

[RavenFeather]

Medical research is just beginning to image changes in the brain to verify FND. Doctors can not answer what is not seen by a machine. Knowledge expands so rapidly that no one can keep up. Continue to search for your best answer and focus on taking care of you.

[Van604]

I agree with Sparklingsunshine. Once you get this FND label, you're toast. I went to an Internal Medicine specialist because an MRI showed I have an abnormal thyroid and she refused to follow it up (didn't even examine me) because she said I was "well-served by a neuropsychiatrist"!

[Littlecook in reply to Van604]

Yes that's the problem we have all been marked up like something in a shop you know what's wrong just put up with it, good luck .

[Sparklingsunshine in reply to Van604]

I've always said doctors love the Chronic Fatigue label as they can blame everything on that, seems FND is the new CFS. This medical gaslighting is the reason so many people trust Dr Google more than real life doctors and why so many people resort to trying out wacky cures or buying unprescribed meds off the internet.

And who can blame them? If we feel dismissed, belittled or patronised then the trust between doctor and patient is broken. Personally I avoid doctors like the plague and unless something was hanging off probably wouldnt go near one again.

I have an underative thyroid and am a member of the thyroid forum on HU. Its extremely active and many members have reported issues with doctors dismissing their symptoms, trying to put them on antidepressants, telling them they are just anxious or depressed, their blood tests are all fine blah blah.

That is a condition with very clear diagnosing criteria, ie blood tests. Not a " well we dont know what's wrong with you". Yet we have plenty of members who end up using private blood test companies, because the NHS ones aren't detailed enough, and members who have to resort to going private or buying medication via the internet because the NHS only provides Levothyroxine, which doesnt suit everyone.

As you can imagine there is very little respect or goodwill on there towards doctors.

[Lady4 in reply to Sparklingsunshine]

My mother was prescribed that med, luckily she was fine with it for many years. Think maybe in the latters years she would occasionally miss one but it was monitored regularly, think 75 (whatever the measurement is on the drug).