The consultant wasn't very welcoming but hey ho nothing new there. He dismissed my symptoms as being related to B12 deficiency. He blatantly stop me when I were trying to explain what had been taking place by saying he only wanted to hear my present synptoms which dismissed what had improved since injecting.
He wants to rule out diabetes, he is doing nerve function tests which I have had before due to my lumber spine degeneration and a scan. In my consultation letter he has written I have convinced myself my symptoms ate caused by my low B12 and do add insult to injury has diagnosed Functional Overlay ! This was no surprise and if honest I were exspecting it because one of his colleagues tried to do the same. That was sometime ago before the diagnosis of B12 deficiency. I were seeing him for a stroke which he diagnosed then he slipped a piece of paper into my hand with a web address on which to my surprise was Functional Overlay !
There were no tests, no ruling out my other conditions or other possibilities just a tuning fork stuck on my forhead, a little bit of pulling and pushing of his hands up with my mine----Bingo Functional Overlay. I made a complaint to pals and asked for proof of his diagnosis - of cause there wasn't any. Luckily his diagnosis did not follow me like a bad smell due to my London specialists not adding the label to my diagnosis list.
I just read somebody elses post who was also diagnosed FND ---- I wonder how many others have been labeled with the same ?
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Jillymo
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My consultation didn't go well either I cant abide neurologist they are always a bit starchy from what dealings I have had with them.
I am just about to bat the consultant another email which I will copy to both pals and my surgery........added to my letter the following.
Whilst on the subject of functioal overlay - kindly provide the evidence of your unfounded diagnosis ?
Functional overlay is not diagnosed by waggling a finger in front of a patients face or pushing their hands up and down. A diagnosis can only be made by ruling other conditions out until they have exhausted all other possibilities.
I saw I think at least 5 neurologists and only one did I rate as reasonably good...he at least thought B12 deficiency was possible.
I was diagnosed with psychosomatic symptoms and probably FND and hypochondria etc.
I saw someone who specialised in psychosomatic symptoms and felt I was put under pressure to accept the diagnosis. I kept saying that I thought there was a physical condition causing the majority of my symptoms....in the end I just shut up and didn't say much.
In the end I realised that the only person who was going to help me was myself.
I can truly say that I got far further with finding out what was wrong with me than any of the neurologists and other specialists I saw.
I got snapped at by one neurologist ... he seemed very impatient.
Made sure I took someone with me to follow up appointment as a witness.
These days after some difficult experiences I would prefer to have a supportive person as a witness due to losing trust and /or to record appointments.
I'd have made a formal complaint if I could have proved the way I was spoken to.
Pals are a waste of time inmy experience, they push your complaint back to the person your complaining about. If you get as far as the ombudsman he often refuses to take your case on.
I have had covering notes put inmy medical notes in the past for errors or unjustified comments made by consultants -but these are all things people like ourselves could do with out it's all added stress.
I am so sorry to read how appalling you have been treated and others.
I too had functional neurological disorder, from a private male neurologist, way back when. I couldn’t walk in a straight line. I took a friend with me and asked to record the conversation which was denied. Fortunately, a private female GP was unimpressed when she saw my tremors and ataxia. Then another lovely private neurologist Oh Coeliac disease and multiple deficiencies.
To follow on from Nackapan’s point of gender. I do wonder how many of us are female. There are many gender health inequalities studies and our government (England, Wales, Scotland) and the World Health Organisation (W.H.O) have produced several papers, reports and papers trying to address this. Areas discussed are not been listened to, pain management and dementia.
Unfortunately, doctors, us females are more likely to have autoimmune diseases. 80% women as opposed to 20% of men. Recent research shows this is due to the XX chromosome. Our symptoms initially are vague and on average takes 10 years to diagnose with multiple trips to doctors. Because of the inflammatory response, we will be in a lot of pain and it affects our whole body. There’s a massive domino affect. We will be exhausted (it is the fatigue of oxidative stress which is biological stress, not the cat was sick on the carpet type of stress).
A sibling who’s a Consultant has always said, ‘Any doctor who claims they know everything is dangerous.’
I have found over the considerable amount of years many male consultants use bullying tactics with regard to female patients. In my younger years I would come out in floods of tears - but no more. 🤺
I often wonder if I had a man at my side if I would get treated in the same way. This consultans attitude was appalling and he was adamant not to listen to my symptoms. As for the notes I had made I didn't even get a chance to refer to them.
Every word of this resonates. I am esp aware of the dissonance in care due in part to my former profession. I am a retired, senior military officer (US, female). In service, there was some medical discrimination (men more often presumed to have service related disabilities) & missteps. And in my younger years there was some serious gaslighting from older docs & even now the system is far from perfect. But in general my appts with service docs & specialists were efficient, honest, & respectful. It helped that as I grew older I often outranked, or was equal in rank to the provider. 😂 Age was an advantage. I never had to “prove” my symptoms. I was called ma’am, symptoms were recorded, family & medical history noted, & tests ordered, results discussed. More tests ordered as needed. No drama. It is how it should be for everyone. Now that I’m navigating the German system I find it is the norm to assume older women are delusional. The disrespect & gaslighting are enraging. And the disregard for personal & family medical history is, in my opinion, malpractice. I still haven’t found the key, but am likely to take my husband to my next neurology appointment - which also infuriates me. My word is suspect, but his is taken at face value. 🤬🤬🤬
I can remember when patients were listened to and both Drs and consultants treated you with respect and would try to get to the root of the problem. How standards have changed and what a battle it has become.
Sorry for such a short reply - I am in agony and need to put a post on in hope of getting some insight of what is wrong.
One problem today is that you get paid to do a job.Whether or not that job has been successful in addressing the problem. How many doctors/specialists have failed in treating people but still claim there huge salary.
How many politicians have failed in government and have been rewarded !
If all payments for work undertaken were to be based on results more attention would be paid to finding the right treatment.
Had a minor op in 2019, was early for 1st appointment, so patient watched as there was around 80 over 3 clinics. Each one was in and out within 5 minutes, including myself, with the comments in medical speech at speed, obviously. Went to A & E in Dec 21, doctor was not interested in my injuries, head, neck and spine. She also admitted that she does not listen to patients, typed up on the computer, squeezed my shoulder without telling me, and instantly came up with a box of painkillers, and I was out within 5 minutes. My x-rays were done at a private american hospital, and my pending Physio, by a contractor, really.
It seems not only is this apalling treatment in the uk it's world wide.I have had similar experiences - I went to A&E with heart failure which was both diagnosed and confirmed and ended up being treated for gastritis. 🤔
Jillymo, Functional Overlay was suggested to me but not a diagnosis. Functional Overlay is simply a doctors term for "I have no idea what the heck is happening" it is convenient, lazy, and meaningless diagnosis. Before I had my PA diagnosis the entire right side of my body went numb in summer of 2020 and I spent the night in emergency. I was tested with brain scans, spinal cord scans, CTscans, Magnetic Resonance Angiography, I was prodded and poked and stuck some more. I had all the neurological vibration tests, functional tests... I had all the symptoms of a stroke yet they could find nothing. No evidence of stroke. So I was diagnosed with a Transient Ischemic Attack or TIA. This is similar to Functional Overlay because it is also a useless diagnosis but lets the neurologist off the hook. TIA means in doctor parlance that it looks, smells and feels like you had a stroke but we can find no evidence of a stroke. So TIA means "I don't know what the heck happened". But I can put that diagnosis down and then I am done with you.
Turns out, as I found out months later, my numbness and nuero issues were all related to PA, extremely low B12, and nerve damage of which has since have healed about 95%.
Understand that neurologists, although they've come a long way, really know so little about how the brain functions. We have such high expectations and at times place them on this pedestal of great knowledge and that coupled with their own arrogance almost requires they give these meaningless diagnosis. The alternative would be for them to just be honest and speak in the terminology of the patient...that being "I don't know".
Ah, yes, agree wholeheartedly! I read somewhere that doctors receive maybe half an hour of training on vitamin B12 at medical school. Virtually nothing on PA. I am not sure how valid that is but my experience seems to validate that. In summer of 2020 I was pretty much bedridden 16 hours a day and I had to go through 14 different doctors before I found one, a hematologist, that was knowledgeable on PA. Thank God most of my symptoms have resolved.
I was only 6 months but was pointing and flexing my toes, as we are at increased risk of deep vein thrombosis. Oh and we should be told to change position to stop ourselves getting pressure sores.
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Was thinking of Dr. Chandy yesterday, God bless him for having such courage
How Bad Have Your Symptoms Been With B12 Deficiency?
Setting surgery precedents for treatment: should you tell your GP if you are self-injecting ?
Multiple sclerosis or B12 Deficiency...study needed.
Paper preprint: Transcobalamin Receptor Autoantibodies in Central Vitamin B12 Deficiency 
