I was diagnosed just before Christmas

[Tanyaelizabeth91]

Hi, I was diagnosed with fnd the week before Christmas after having a stroke, I find the lack of understanding and support from medical professionals absolutely disgusting. I’m 29 a single mum and have also been diagnosed with fibromyalgia. It’s feels like a constant fight to be understood and seems like when diagnosed with these conditions nothing else can possibly be wrong as as soon as they see it on your medical records it’s automatically put the that.

[Goldfinchy]

I can completely relate to that! I too was diagnosed before Christmas, I spoke to my GP and said this doesn't feel right to me. He is very supportive and made a referral to a 2nd neurologist. I saw him once, he didn't agree with the FND diagnosis but also couldn't give me any other answers. He reviewed my latest MRI and said it looked normal and I was discharged without any conversation. Now I accept the FND in the lack of any other diagnosis but now what? No specialist nurse support or anything else, just left in no man's land. Its hard to know whether to accept my lot or keep pushing for more answers?

[Tanyaelizabeth91 in reply to Goldfinchy]

Thank you for taking the time to reply. I had a telephone appointment with neurologist who apparently specialises in fnd he asked if I wasn’t still the same or getting worse, I told him I was getting worse and that symptoms had spread to my left side and all he could say was oh it’s got worse we’ll talk to your go and they will refer you back to us if needed. He also told me that apparently some people symptoms disappear when they understand the condition I don’t have a clue how that’s supposed to work as I’ve read every article going about fnd and still no different. Something needs to be done. I would keep pushing, it’s taken me 5 years for a diagnosis and nearly another year to have ot come out for a frame around the toilet and a bath board. There needs to be more support out there for us and I’m going to try my best to make sure this is achieved

[Van604]

I completely agree with you. Since I was diagnosed with FND, three years ago, medical staff have all treated me, at best, as a neurotic and, at worst, like a fake. It's incredibly frustrating, not to say potentially dangerous. My own neurologist warned me that, just because I have an FND diagnosis, it does not mean that I can't get other medical conditions. He cautioned me to stay on top of my physical health and ordered thyroid tests (even though it wasn't his job) because my GP failed to do so, even though imaging shows I have a goitre and a nodule on my thyroid. I have also been diagnosed with a blockage in my heart (discovered by accident when I signed up for a clinical trial on exercise), but that has been brushed off too, as has a kinked artery in my brain, which showed up on a CT angiogram. I've been hospitalised several times because of collapsing episodes, which last anywhere from a few hours to several days. In hospital, I've been mocked and suspected of malingering by doctors, been subjected to horrible pain inducing techniques by nurses and paramedics, and one ER doctor tried to persuade a psychiatrist to certify (section) me - luckily she firmly refused. I was referred to a neuropsychiatrist, who insists that it's all psychological (even though leading experts in the field now dispute this). He sent me to a psychologist who, after 18 months and thousands of dollars, told me he does not believe my problem is psychological, and advised me to move away and start again somewhere else where I haven't been stigmatised! So that's what I'm doing and hopefully I won't get the same terrible treatment in my new city.

[Tanyaelizabeth91 in reply to Van604]

Thank you for taking the time to reply. The stigma surrounding fnd in the medical world is absolutely disgusting and I can relate too I how you were treated, I recently had a miscarriage which I believe could have been prevented if medical staff did the right examinations and tests instead of brushing my pains under the carpet as fnd. I really hope you get the help you deserve and all the medical professionals who doubted you are disgusting and deserve to be stuck of. I used to work for the hospitals caring for patients and I still can’t believe how some staff treat people in my opinion they should of never gone into the healthcare profession.