FND Misdiagnosis

[RoseFlowerDew]

I have just responded to an old posting on this forum but wanted to post it separately to shar emy recent experience.

I want to share the fact that I paid for a private neurologist appointment for new seizures and pernicious anemia neuro complications (after 8 years of NHS failings) only to be told it was FND. I have since discovered that my seizures are controlled by calcium (unknown reasons for calcium deficiency at present) and I was severely under treated for B12 deficiency, vitamin d deficiency etc. Like others here and on other forums the GP suggested counselling for the aches and pains bit actually turned out to be caused by vitamin D deficiency.

It seems once misdiagnosed all labels stick and it’s very difficult to get overturned. All NHS promotions for CBT therapy, or psychological support instead of checking for basic medical disorders is not only inefficient and ineffective it’s can be both highly negligent or even lead to permanent neurological disability or worse. Anyone given an FND diagnosis I would urge to think seriously about ditching the doctors and seek better informed medical practitioners the best way you can….as the consequences aren’t for the consultants but by patients and their families. Also note the recent conviction of fraudulent doctor by the courts and that with a bit of research there’s a general understanding that it’s not an isolated incident.

I’m not trying to stir trouble for anyone but want to stridently voice the need to ensure basic medical problems are covered. For instance in the pernicious anemia forum we’re well educated in the fact that blood test ‘normal range’ can be arbitrary from country to country or regions to region and also that some blood tests are severely flawed. So it’s worth educating yourself about any tests you go through and false negatives and false positives so that you can ask relevant/pertinent questions when given an FND because other tests have shown nothing.

[Nyxks]

Been living with uncontrolled movement issues since 1979, growing up my folks where told time and time again that tests are normal = she's doing it for attention (ya a 2 year old who's being forced to relearn how to walk, talk crawl and other things that had been learned until whooping cough shorted my brain out and forced a complete reset is doing things for attention yet at the same time is trying to tell her parents "I get" "i do" and trying her dardest to make that actions happen. I spent from 6 years old until I aged out of the system at 18 doing to weekly Physiotherapy to address, speech, walking, hand writing, balance, etc. All because they where issues, yet the Physiotherapists all couldn't understand what was going on. I'd learn it but kept having issues.

Got accused of not doing my therapy (which ticked my mom off as she saw me doing them n in most cases was doing them rite there with me.

Needless to say not having any answers for what was going on for close to 40s years made growing up its own nightmare.

In 2016 a epitoligist who is my mates doctor thought my spazems, jerks, etc was related to Dystonia (the symtomology fit, not fully but in many areas) got a referral to the movement disorders clinic which i finally got into this month. The head of the department after 3 hours said Functional Movement Disorder (but wouldn't rule out Dystonia being in the mix, just not the primary issue/deal).

First thing I asked him was could I get a Functional MRI because I know for a fact that that particular hospital has such a machine (its one of a few in the entire country n its tied into the movement disorders clinic because of their research grants and stuff). So currently waiting on that scan to happen, but in the mean time they want to try more physical therapy.

So I'm willing ofcourse because there's always the possibility that something new will work/help but I'm still skeptical how effective it will be until I see it for myself.

[angel-7 in reply to Nyxks]

I’m in Canada and was told 3 months ago that I have FND, and told by doctors that the medical field is 10 to 20 years away from being able to take a Functional Neurologic Disorder MRI. And now I read that you’re awaiting a Functional MRI…can you kindly tell the hospital name and country? Thank you and Best Wishes, I wish you tremendous Peace and Good Health

[angel-7]

RFD, I am so happy that you are finding/have found your way. Thank you for sharing this. Can you please let us know how and through whom you found out about the calcium, B12 and Vitamin D? A holistic practitioner for example? And I wonder how long you have been upping the B12 and D, and if you are still having seizures. Thank you 👏🏼

[RoseFlowerDew in reply to angel-7]

Sure, and I apologise for my long reply.

I suffered symptoms for months and years and NHS and private kept saying psychological but slowly I discovered symptoms improved with certain things.

For example I discovered I needed more B vitamins by using a face cream that happened to have niacin and some symptoms improved. In December when signs of vitamin D started again with sore spine I decided to take calcium supplements as well because I am older and discovered it halted my seizures.

From these discoveries I went to discuss with my GP and was pretty much fobbed off. They are finally offering testing for autoimmune gastritis, celiacs and parathyroid which will be in a couple of weeks. Sadly I am reducing my supplements for a more accurate results and beginning to have prodromal symptoms and beginnings of seizures again.

Autoimmune B12 deficiency was because eventually I started passing out more regularly. The last time in the shower causing concussion and whiplash. A retiring GP recognised the symptoms and ran tests which proved clinical low B12 with GPC antibodies. Unfortunately he left around the time of the results and so the neurological and psychological symptoms couldn’t be joined to the diagnosis of pernicious anemia as severe neurological complications of Pa. When I returned to my old medical practice they practically ignored the entire thing and refused to treat appropriately.

When my symptoms worsened I had like all others in PA community find alternative ways to get B12. I ended up managing symptoms on my own without some poorly recommended medication that was actually reducing my B12.

Someone recommended Drug Muggers book by Suzy which started my awareness and you may find useful. Lastly in PA community there’s awareness that nutrition has been dropped from medical education and so simple things are missed repeatedly because of course a developed nation doesn’t have problem with nutrition.

I am sad because cost of living crisis will only inevitably lead to more suffering of medical issues caused by deficiencies. Behaviour, mood etc are highly interrelated with being able to absorb food properly. For instance copper imbalances are known to cause aggression which is so easy to fix.

Finally I had all the symptoms over years that are only now people are becoming more educated on (which you can see in today’s report for youngsters using drugs which is another route of B12 deficiency bbc.co.uk/news/health-64718....

I can try and answer any further questions but for now that’s all I can say.

Wish you all the best luck….

[angel-7]

Dear RoseFlowerDew 🌹🌸💦

Thank you. You are so knowledgeable, intelligent, strong and kind. I am amazed at your sensitivity/awareness of your body’s reaction to things, i.e. the face cream and calcium supplements. I hope you can return to the supplements as soon as the tests are over and that there is someone to help you at this time. I am sad for the cost of living crisis for many as well. I will pray that the answer is found soon, and you find healing ❤️‍🩹

[RoseFlowerDew]

you too! Thank you for your kind words. Take good care