Neurologist has just diagnosed me with Functional Neurological Disorder, is this what they say when they mean all in your head????

I feel so upset and quite cross. I had an appointment this afternoon to see a Migraine specialist, only he wasn't there so I saw a registrar neurologist. She was so quick in doing the examination and I was getting so confused at what she was telling me to do. She has diagnosed me with Functional Neurologicl disorder which I think means psychosomatic.

I tried to tell her that I have general weakness and difficulty walking that is made by activity which would be from the untreated thyroid or CFS. But I am having definate episodes of left side paralysis, slurred speech, co ordination problems, cognitive problems, pressure in the head etc I have these episodes around period and ovulation time. I feel that these are definate separate episodes from my more general weakness. Everything I have read on hemiplegic migraine ties in with what I am experiencing. These episodes last for about 3-4 days then function returns. She does not agree with any of it. Firstly in her opinion thyroid would not cause any of this weakness and two it can't be hemiplegic migraine because they have normal periods inbetween. I tried to tell her that I do have normal times when I can walk. She said that she wouldn't diagnose h p migraine in someone with my history of weakness. I said surely you can have two seperate conditions? I gave her my detailed diary. She did not read it but put it in my notes.

I was made to feel that I was wasting her time!

I don't know how it can be all in my head when I have had two muscle tests showing myopathy. The doctor who did the tests even put that it was probably due to my thyroid.

I think I hate doctors even more every time I see one. I had to hold back the tears as I was catching a taxi home. But once home I was angry and thought I'm not going to let you make me cry!!!! I feel like complaining about how quick she did the tests- she flew through it and didnt care that i was getting confused I must have been in there 5 minutes!

I don't know what to do now?

Carolineanne x

34 Replies

  • No, no - definately not all in your heD, i'M WITH MUM now, retired nurse, said it means means msgs. not getting thro' properly. (I have CFS)

    maybe can ask GP to clarify. normally notes get sent thro'

    Bleess you. *hugs*


  • Thanks TW

    I have made an appointment to see my gp to discuss this as I saw another neurologist and he said it was CFS. My gp said that my symptoms did sound like hemiplegic migraine and so we researched and found a migraine specialist.

    I really feel that the neuro I saw read my notes and had pre conceived ideas. She did not really listen which is a shame I feel. She also said that it would get better on its own!!

    It does knock you a little. I'm going to research some more. I prefer the idea that it's to do with signals getting not getting through rather than I am malingering!!

    Thank you - hope you are having a good day today!

    Hugs back

    Carolineanne x

  • UHCW again?

    I've just googled it and regretfully I think the answer to your question may well be 'yes'.

    "an umbrella term for a variety of symptoms of apparent neurological origin but which current models struggle to explain psychologically or organically."

    So it's either, it's all in your head or it's, we haven't got a scoobies what's wrong with you.

    We have corresponded in the past on other matters and I feel your pain.


  • Hi Anstey

    Thanks -Yes UHCW, how did you guess? Lol

    What annoys me is the suggestion of emotional issues manifesting as neurological symptoms. No wonder the doctor was asking questions such as ' are you worrying about things at night' and 'do you suffer from depression'? I was living quite a happy and fulfilling life before thyroid disease came knocking thank you doctor!!!

    She was one of the worst doctors I have seen there to be honest. During the examination she asked me to push down with my leg. As I began she moved her hand away to do the next move and I kept thinking ' hang on! I haven't done it yet! '

    I felt as though I was on an express train or a fast roller coaster. My poor hypo brain- didn't she know I needed about 3 minutes to work out which hand was the left!!

    Funnily enough I had a private appointment at a CFS clinic on Monday evening and saw Dr S from The W centre. I have to say that I was quite shocked about how good he was. Perhaps they are different outside of the NHS. Time will tell I suppose.

    Hope you are doing well

    Carolineanne x

  • Hi CA

    I am not doing so well (long story). I can't identify Dr S...would you be able to PM me his name?



  • It's not what the say when they mean "it's all in your head". It's what they say when they don't have a bloomin' clue. For some obscure reason that I will never understand, most doctors seem to think it's better to say the first stupid thing that comes into their head, rather than admit they don't know and refer to a higher authority or order more tests.

    Result? More cost to the NHS because you keep returning unless or until someone with a brain cell actually manages to engage it.

  • Thanks Rose

    I think that you are right. They just have a way of making you feel that you are wasting their time. First I was upset, then I was angry. So I've been reading all night and I have decided that I am going to write to tell them that I do not accept their diagnosis. They seem to give out that diagnosis when it's medically unexplained. Hmm how can it be unexplained if I have AI hypo ( which can present with neurological symptoms ) and two seperate EMG tests showing myopathy ?

    With their one brain cell they probably won't take any notice but it will make me feel better, aha!

    Thanks for the support

    Carolineanne x

  • Carolineanne, is it not possible that your migraines are due to the hypothyroidism you know you suffer from? Migraines are a symptoms of hypo. Are you sure you're on enough thyroid hormone replacement?

    Sorry if this is a stupid question, but...


  • I was wondering the same - another case of treating just a symptom and not the root cause ?

    Don't give up CarolineAnne....many of us have had experience of an arrogant, incompetent doctor believing it's all in our mind but, with research and support groups like this, have in the end proved it was not ! x

  • Thanks for the support Polaris

    CA x

  • Hello Grey

    Not a stupid question....... Just stupid doctors lol!

    The thing is I'm not sure if they are migraines as I don't get the headache ( luckily) just the left side weakness/ paralysis. But the aura of hemiplegic migraine sounds exactly what I am having.

    I'm trying to investigate all possibilities and it could be very likely that this is down to the dreaded hypo. Unfortunately, I don't seem to be able to tolerate thyroid hormone so I am on nothing.

    It's all very confusing and it doesn't help when doctors are telling me it's all in my head and it will go away on its own!

    Why is it I wonder that most doctors say ' ooh your thyroid wouldn't cause that'. Do they really think that it's just fatigue, constipation and dry skin.

    Thanks for your support Grey

    Carolineanne x

  • I forgot to mention that I've had migraine with aura (one sided), sometimes affecting speech, but without headache, most of my life, usually triggered by eating combinations of cheese, tomatoes, chocolate and red wine, although it was sometimes down to missing a meal or monthly hormonal change (not a problem now I'm a retired old lady)

    I've also noticed that reading by an energy saving lightbulb or fluorescent lighting can set it off. Usually a cup of sweet, black coffee away from bright light helps.

    The left side paralysis you mentioned sounds alarming....definitely not all in your mind ! x

  • I had migraine auras when I was pregnant when I was in supermarkets, with the very bright lights, but I made no links to diet. disappeared after births.

  • Your head is unlikely to go away all on its own, unless you are Anne Boleyn.

  • Thanks Polaris

    I have been keeping a diary and it seems related to my monthly cycle, probably the hypo affecting the hormonal swings. Maybe even peri menopause, I am 43 and they only started about 4 years ago. No history of migraines.

    I might try a private appointment. At least they take the time to listen. Just need to research and find someone good.

    CA x

  • All the symptoms you describe - definate episodes of left side paralysis, slurred speech, co ordination problems, cognitive problems, pressure in the head and migraines are all symptoms of Hughes syndrome which also just happens to run alongside autoimmune Thyroid conditions. It would be wise to ask for a blood test to check for this. You could also look on the Hughes website to see if any of the other symptoms look familiar too.

  • Wow. Thanks for this. Never heard of this one! It's quite surprising that these symptoms can be from so many conditions. I'll have a read.

    Carolineanne x

  • Ok even more wow! I just had a look and read about the blood tests. I have had two seperate positive tests for lupus anticoagulant ( 06 and 08 ) I remembered this as my cousin has Lupus and I asked my gp if it meant I had it. He said no. Then a few years later another gp said ' oh I see you've got lupus' I said no and she told me it was on my summary!!

    So I have just looked through my blood test results to see if I had any of the other tests done. In 2008 I had the anticardiolipin test which was negative. I did not have the third test listed.

    So any idea of what this means? I should probably discuss with my doctor right? Maybe more investigations? Or does having the negative anticardiolipin rule out having this? Sorry thinking out loud-might look on the forum.

    Thanks for letting me know about this

    Carolineanne x

  • Hi Carolineanne - First of all the LA - Lupus Anticoagulant Antibody test if positive does not mean you have Lupus, the name is very misleading. It is a test for the Antiphospholipid Antibodies and if positive can mean you have the Syndrome. If you have tested positive to this twice then I would most definitely ask to be referred to a specialist APS Clinic like St Thomas in London especially with the symptoms that you have at the moment.

    You do not have to test positive to the other antibody tests aCL and the anti -B2GP1. It does not mean that you will not but its not necessary in order to get a dx.

    If you have never suffered a clotting incident then they will probably treat you with a baby aspirin in order to prevent one from happening. Sometimes Aspirin is not enough to control symptoms and migraines and TIA's can be a sign that the blood is getting too sludgy which is what causes the neurological symptoms as the brain does not deal with the sludgy blood very well. At that point they may do a Heparin trial for a few weeks and if symptoms improve then a swap to warfarin would take place.

    If you want to join the HSF Forum to ask some more questions please do so - we are a friendly bunch!! :D And please do let me know how you are getting on. x

  • Oh and I forgot to add that neurologists in particular are the worst in diagnosing Hughes, we have more problems with them than any other specialty.

  • That does not surprise me considering you are only in there 5 mins and they do not listen!

    I have only managed to get back on my computer now as I've been looking after my little godson. I will do some more research into this.

    Thank you

    CA x

  • I agree with ApsnotFab, this is a condition frequently missed, and needs urgent treatment and your neurologist in common with many does not have a clue. Please go back to your GP, and if not there is a private route for diagnosis which will wake your local medical team up. Mary F x

  • Just a quickie.. If your blood is sticky or sludgy, does it affect your blood pressure, pulse or temperature? Do people with this present typically with high BP or slow pulse?

  • People with APS do have high BP but I'm actually not sure if that is because of sludgy blood, I'd have to look into that. I myself have very low BP because of compromised autonomic dysfunction and that can also be an issue with Hughes. If your blood is not circulating properly it can cause all sorts of issues which will reflect with other conditions that then can give you symptoms. However the underlying cause will be the APS.

  • Thankyou Mary

    I have an appointment next week with GP. I will definately discuss this with her. I wonder why my old gp brushed it off as insignificant when I asked him about it?

    My mother had a stroke just about a year ago. She went to New York for a month and was exhausted when flying back and had a stroke a few days later. It was the last thing any of us expected as she was so healthy and fit and active. She has never had any of the symptoms that I have. Does it run in families?


    CA x

  • Prof Hughes said at the Hughes Syndrome Patient Day this week that there is a genetic tendency although they do not know the genes yet. My own father gad Haemolytic Anaemia an associated condition and people with Thyroid conditions are often in the family somewhere.

    I must assume your mother is being treated with anticoagulants following her Stroke if not she should be tested and if positive put on warfarin.

    As for your GP I'm afraid I can't comment really other than to say that many GPs just don't have any knowledge of the condition and you will probably end up educating yours! Prof Hughes holds a GP lecture on Hughes every so often and gets around 200 GPs attend. It's at London Bridge Hospital.

  • Thankyou - have found out my mum's sisters son has this condition. Auto immune diseases seem to run in the family! And yes Mums being treated and she is doing good.

    CA x

  • Hi Caroline Anne

    I have same look up fnd it gives a lot of help, it is so not in your mind its very real having negative doc experience can really set you back but don't let it cause that happened to me 5 yrs ago and only now getting the help I need after getting worse every year all because of a unhelpful doctor. I now have a doctor who understands the disorder and it makes such adifference. Take care don't let it get you down, :-)

  • Thank you for the support :)

    CA x

  • CFS doesnt really exist, but can be un diagnosed conditions that cause the severe fatigue. M.E. however does exist, and as a neurological disorder could cause many of your symptoms. The HPA axis is also greatly affected in M.E. which affects all hormones.

    paralysis, slurred speech, co ordination problems, cognitive problems are common in M.E. sadly there are no good M.E. drs on the NHS in this country.

    But there are some good private ones.

    You at least deserve an MRI to rule out other illnesses.

    I hope you can find one.

  • Thankyou Angel

    I have had MRI so nothing too serious going on. I will look into ME and the specific signs and symptoms. I wonder why they havent diagnosed ME and have preferred to diagnose FND. In their opinion is it linked? I have decided to complain as I have received a copy of the doctors letter and it contains many errors and is quite rude referring to the patient (me) as an ex employee of Royal Mail instead of referring to me. Also the doctor states no muscle wastage but I had leggings on so I don't know how she could see through those!!

    Thanks for the support

    Best wishes

    Carolineanne x

  • ME is a neurological condition so maybe you don't have the symptoms.

    It seems that FND can sometimes mean in your head, but Often iit means there's something wrong but we don't know what. A bit like IBS.

    Maybe seeing a different neurologist with a better reputation would help.

  • I am a student of Functional Diagnostic Nutrition (FDN) even at 58! You should read two amazing books and seek out a proper Functional Doctor or Neurologist. They will definitely help you and I hate conventional doctors too, who only look at symptoms and have no knowledge of how to find underlying causes.

    Best wishes,

  • Thankyou Mooringsman for your response. I will look at the links you provided. Much appreciated

    Carolineanne x

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