I just wanted to let everyone know of a problem with private doctors and neurologists. There is a continuing lack of education among these professionals who will happily label neurological symptoms of PA, even with evidence of PA present, as psychological by using the friendly name of Functional Neurological Disorder. Thankfully it’s a label that is questionable as seen by the article virology.ws/2019/12/30/tria... and linked conversations….
‘Conclusion, if you cannot work out what is wrong with a patient, make it someone else's problem with a FND diagnosis. If the patient is reluctant to accept this diagnosis, simply blame the patient. If the treatments don't work, just blame the therapists. Remember, fixing FND is not your job as a neurologist, it is someone else's problem!‘
Nonetheless having my ‘organic pernicious anaemia’ diagnosis removed by a neurologist to be replaced with FND is alarming especially since I paid for that privilege by using a private consultant and worse the finding will be sent directly to my NHS GP without me being able to choosing not to pass it on.
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RoseFlowerDew
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I am sorry that this has happened to you but sadly not surprised...I was labelled with psychosomatic symptoms, FND, hypochondria etc etc.
These diagnoses were very difficult to shake off and followed me to each specialist I saw in the area I lived in.
I paid privately more than once in the hope of getting a specialist who really listened to me but this didn't work out for me.
If you are not happy with something in your medical records, you can request that a note giving your opinion is added to your medical records. You cannot ask for someone to change their diagnosis but you can say that you disagree with it.
These days after the difficult experiences I have had with health professionals, I personally would have no problem with writing to a specialist saying I did not agree with their diagnosis but I would only do this if I could back up what I said with evidence that supported my argument eg extracts from health records, extracts from UK B12 documents etc.
I would warn you that specialists just like GPs sometimes find it hard to cope with assertive patients and doctor/patient relationship could come under strain.
You might want to consider asking to record appointments in the future.
Doctors are likely to be reluctant to allow recording but you should be able to argue to be allowed on disability grounds if you have memory/cognitive/fatigue issues.
Also when pandemic restrictions allow, consider taking a supportive family member or friend as a witness to face to face appointments.
Maybe have another person present in room for telephone appointments...
Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg causes of B12 deficiency, B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.
I am so very sorry. It is an utter disgrace and extremely disheartening. You have had a blood test and injections (??) so that is unequivocal proof you have PA. So, that DIAGNOSTIC TEST and TREATMENT you have been receiving well, let’s just ignore all that shall we.
So, clever Neurologist. Please may you tell us what is your rational for this new diagnosis ? When I have had face to face, I do this great blank impression as if I am really stupid and cannot understand what they are saying because I am female and a hypochondriac. I get them to repeat it, shake my head , saying No, shrug, with this , ‘ I can’t help being dim’ look. Can you write it down for me please ? Got ya - it’s in writing even if it’s a scrap of paper. Get home, tape it in my diary, Handed to me by x on date at time and where.
Like Sleepybunny suggested I write to my doctors, cc’ing, keep copies. Note dates, times and when telephone appointments occur, a bit of shorthand so I can quote verbatim.
What can I say - I was also given the FA label and thats all it is a a rudy miss diagnosed label.
I have various autoimmune disorders but was sent to a neurologist after suffering a stroke. Within a few minutes of the appointment a piece of paper was given me telling me to look up FA. I had never head of it but when I looked it up couldn't make head or tail of it.
When I received my consultation letter at the top of my various diagnosed conditions was - Functional Overlay !
It's away of pushing us aside sometimes because we are too complicated or just out of pure ignorance. If a consultant hasn't the ability to diagnose why not pass us onto someone that can instead of coming out with a load of
bull💩. Thankfully my consultants havn't included FA on recent consultation letters.
Thank you for sharing that….as I am still on verge of tears but also very angry. It’s true, I agree, that it would be honourable for them to admit they don’t know and leave it at that. At least that leaves the possibilities open to go elsewhere. In fact I want to have a rant but might sit on it for a day or so
I know exactly how you feel - I had never seen this nero before but as I said within a few minutes he handed me a piece of paper telling me to look FA up. I have a variety of complicated autoimmune conditions and luckily the bad smell of his diagnosis hasn't followed me.
Keep your chin up hun dont let this get to you tackle the diagnosis if you can or ask for a second opinion your within your rights to do so. It is hard to tackle these damned idiots when feeling unwell but I can assure you many of us have had to do just that.
So sorry for your frustration. I went a few years with diagnoses of "Chronic Fatigue Syndrome" and "Somatic symptoms." I am in Germany and these terms are generally code for Hypochondriac. I wasted a great deal of money and precious energy going from doctor to doctor. All of whom simply fell back on the CFS or somatic theory. Ironically, it was a very progressive psychiatrist who made the B12 connection. I saw him because of the severe cognitive loss and he immediately said it must be organic in nature and ran about a 1000 euro in blood tests (with my permission). Turns out in addition to the Active B12 deficiency (vs Serum/Total B12) I have a load of others including a mitochondrial issue. Those blood tests are now what enable me to go to other specialists and investigate where the deficiencies are coming from. But what a crazy waste of time and money when B12 deficiency and others are so easy and cheap to treat. I feel enraged sometimes. I told the Psych I think I have medical PTSD. He said he understood and confessed he feels battered by his colleagues sometimes too. I wish you luck and stamina, and lots of good rest.
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