Am I the only one who is sickened and saddened to read story after story of people with neuro problems being fobbed off with this?

[angelite]

What is this recent medical movement that disregards the relevant tests that should be done to rule out all other possibilities before a verdict of 'this is all in your head?'Why are positive test results being discounted because another test was negative?Why are anti depressants being offered so liberally at consultations for medical complaints previously treated as physical?What is going on?I am not impressed NHS,not at all.

[cathys20]

Hi, Are you newly diagnosed with fnd or cd?? Please give a little more of your story if you can. When I was first diagnosed I was treated very much like you. But Psychiatrist after psychiatrist said it was not cd, nor did I think it was. Was finally diagnosed with a movement disorder. It took 2 years. Recently when I became very weak only on oneside, the issue arose again for a short time, but then thanks to my neuro's input was put back to movement disorder with possible fnd symptoms, but not cd. I am from the states. I would love to be of help. We are able here to get multiple opinions. I have been one of those blessed enough to have their Dr. form his/her own opinion and not be influenced by what another Dr. may or may not have thought. I believe fnd is very real, not a manisfestation of a conversion disorder. I believe most of us have a neurological functional disorder, or movement disorder. I believe CD and FND are not the same. I also firmly believe that one day that will become more clear, and many will stop falling in the cracks of this current system. These are just my thoughts. Cathy [e-mail]

[angelite in reply to cathys20]

Hi Cathy,

I was finally diagnosed as Functional one year after the event of my illness-long story .I believe that I belong in the Encephalitis category.Early Jan 2013 mysteriously' pulled' my neck,gradually got worse over the course of the working day until it was too stiff and painful to turn.Carried on working although my cleaning jobs were difficult as I was having to turn my whole body!This lasted three to four days before the pain and stiffness gradually subsided.By day 7 it felt almost normal again.Great,its better I thought but the stuff was about to really hit the fan!Two days later myoclonus(rythmic tapping of 4) started in my right groin.Worse next day so saw GP.She thought it might be spinal and referred me for a spine X ray(which I never got in the end due to developments!)Day after myoclonus stated up in my left groin.Then I fell over my own foot(it had suddenly gone completely numb) and my right leg went into spasm for three minutes-I was hanging on to the bathroom door frame in pain.This subsided but things did not feel right and I spent half an hour learning to walk up and down the hall with a leg that didnt seem to work properly.My partner kept telling me to sit down and I just kept saying'I'm not going off my legs!'Back to GP who sent me immediately to A and E.At this point my right arm was having involuntary movements and my torso kept twisting abruptly and repetitively which was knocking the breath out of me!I was kept in overnight and seen by an angry movement disorder guy who seemed to think I was somehow doing this deliberately.I was unable to perform the movement tests properly with my right side and my left leg was acting up as well.I was given a muscle relaxant which worked really well and took most of the muscle spasms away.Sadly I was back to being a one man band again when it wore off!Was seen by a stroke guy who said I had not had a stroke-was discharged,with outpatient MRI which turned out clear and EEG which I never got until months later,told that they had seen this before,caused by stress or pain and I would be back to normal in a few days-Psychogenic.Two days later I started with the motor fits-legs would collapse,arms would pull in tight to my body and spine would gyrate round in a tight circle at speed like a wind up toy.Spent two exhausting sweaty hours on the bathroom floor like this-partner called helpline and was advised to go to A and E.Told I had a functional disorder-that I had to find what was triggering it,I explained that this had woken me from sleep,fell on deaf ears, was given pills for the acid I had started refluxing-(stomach felt like a cauldron by now) and sent home.Spent a further week at home with new symptoms emerging-more fits,internal vibration,electric shock like pains,legs like a bag of snakes,muscles constantly contracting and relaxing,horrendous stomach,could only manage ready brek,back muscles sitting me up randomly.Would reach for objects ,struggle to aim and extend then grasp and be unable to let go.Right leg would stop and seem glued to floor.Twitching and spasms had spread to face and ears,drooling,trouble swallowing,tightening of throat muscles which would wake me up,hoarse voice.Sunday morning I woke up stuttering.Felt strange in the diaphragm area and particularly sick in stomach.Trying to speak made me breathless.Rang helpline-they told me my symptoms redflagged an ambulance-I would have preferred to have gone by car with my partner but reluctantly agreed.Kept me in hospital three days.Some abnormal bloodtests-would not tell me which.Kept asking me how much I drank(Xmas and birthdays only) so maybe liver?Fasting glucose 7.2 One consultant told me I had anxiety!You bet fella!The lady doc who got me the bed explained that the spasms were now affecting my diaphragm,hence the breathing and speech issues.I later learned from my own research that it was likely my old mate myoclonus.I was pretty scared at this point.During my stay I became sensitive to light and noise and was having some massive electric buzzings in my head.I was given a chest x ray -clear.(i suspect this was to check for small cell carcinoma as I am a smoker and my white cells kept being up-some carcinomas can cause enceph)I had three more motor fits.I was discharged by a condescending woman whose there there little mental patient tone was appalling.She seemed to be trying to suggest that I had Munchausens!My partner had heard talking in the staff room-instructions were to oust everyone not at deaths door as they were desperate for beds.Discharged to outpatient Psychology.Paid privately to see neuro-was the same guy I had seen in hospital(I hadn't realised this!).Told me I had conversion disorder!Asked why my GP had put me on paracetomol,for the pain?I said no she just insisted I take the max dose daily.(Later learned that paras are good anti inflammatories and also have calming effect on nerves.She wanted to put me on anti flams but dare not as I had never had them before.She had asked if they had ruled out MS-I said the MRI was clear.It does not rule it out she had replied)

Movement disorder gradually slowed and stopped at 6 1/2 weeks.My muscles seemed very weak-struggled to bathe,walk,use arms to eat,open doors.

Seemed to go through a period of adrenal exhaustion.Autonomic dysfunction-I would stand up,blood pressure would drop,I would go down.(my sis has a blood pressure device)Sometimes I would get ten minutes standing before the dizziness and going down.Circulation seemed messed up-spent a few days feeling v ill with frozen legs from halfway down and feet.White patches on soles that would not pink up no matter how many hot water bottles I applied.Hands would randomly go freezing cold,ten mins later they would swell up red and be over hot and throbbing.Torso was red hot and burning.Was exhausted and had to sleep nearly all the time.Profuse sweating that lasted an hour at a time.Would sweat and shake my way to the loo,get halfway back down the hall,legs would collapse and I'd wait for the adrenaline rush so I could get back up and into the bedroom.Then there would be ten mins of adrenaline fuelled shaking as I sat on the bed before it wore off and allowed me to go back to sleep!Tinnitis kicked in week 4.Lymph nodes in groin swelled up.Struggled to four psych sessions.Referred back to new Neuro-he suspected that I'd had an infection that had gone to my brain.I began research-it seemed very likely.Had a few more bloods,white cells up,lymph nodes up about five months in total.Recovery began.No official diagnosis.Had to see a new GP-clueless.Asked for referral to clinic physio-lovely lass but warned me that she only dealt with sports injuries and I would need specialist help.New GP not happy with physio's opinion of neurological after physical tests-'normally we refer you back to psychology'So sorry to spoil your routine dear.Reluctantly referred me back to same neuro after 1 year.Got nothing at all from the appointment.Seemed different,coy,turned into a game of mind chess!Physical tests-wrote stuff down.Ignored my questions as if I had never spoken-quite disconcerting.Offered drugs for the symptoms-I declined.(I'm aware of the side effects and don't want to rock the boat)I asked if physio would be suitable-he said not.

What a marathon!Bet you're nearly asleep!End result-back to reduced hours and transfer of evening cleaning at 6 months(when I could walk without my stick)and 3 afternoons a week self employed general help for my neighbour.Condition stable other than slight improvement in strength at year 1/2 mark.

Glitches;tinnitus left ear-the spaceship that never lands!,spasticity type muscle probs,generalised,all limbs and body but a little worse on left and the weakness, fatigue,tightness,joint pain etc you would expect.Headaches,need sight to balance,only slight tremor now,still some parasthesia and internal buzzingetc,palps after meals,burning tongue,ecxema,short term memory is pants and multi tasking has gone out the window!I still stutter a bit when tired but its now cognitive.

Me mad right leg developed a flexor type spasm in Feb this year ,also had two 2 mth sessions of positional vertigo which is new-seems related to sinus inflammation but have not been back to GP since I saw the neuro in Jan-kinda lost heart!

How do your problems affect you?

[cathys20 in reply to angelite]

Oh my goodness, I am so sorry for all the Dr.s put you through. Although so much of what you said mirrors my beginning with this crazy disorder. I was at the university, Dr. asked my family politely to step our while he examined me. He immediately started yelling at me, and asking me why I was doing this to myself and my family. I was all twisted up in a knot, unable to even speak, and spasming all over, drool dripping from the side of my face, face in complete contraction, and this Dr. is screaming at me. My family heard and came running in the room. Checked me out without medical permission. Also believe it or not, so much of what you said looks like me when I am not stable. I was pretty messed up the first two years of this, going from, like you, neuro tp Psyachiatrist back to neuro and back again. Each psychiatrist said I did not have a conversion disorder and I needed to get a good Neuro. I was beginning to wonder what a good Neuro looked like. I really have lost all faith in the medical community. After two years I found a new Dr. who formed his own opinions and started working on getting me stable. He was a godsend. I am currently very stable on sinemet. They said I am dopa-responsive and that is why it works so well for me. I had been stable also for a long time on Tegretol, and anti-seizure drug. But my body grew use to it, and it lost its effectiveness. Honestly I have experienced most of what you said at one time or another, in varying degrees. My last bad spell was 4 months ago now. My great Dr. had left his practice because of our famous Obama care. And again I was left without a good Dr. I was having up to 5 attacks a day, lasting for 4 hours each. Unable to speak, move, it was like I was in a coma only I could hear everything going on. No responce to pain. Was in the hospital in ICU for 3 days. Finally, another good Dr. who again help stabalize me. I am still afraid of the Dr.s. They know nothing about this, and because of that they want to put you into a neat little package that suits their knowledge. I will be praying for you that you can find a Dr. that will listen and form his own opinions, and really try something that may work.

[angelite in reply to cathys20]

Hi Cathy,sounds like you've been dragged through the funhouse too!Its amazing how many weird,painful and downright scary things your body can do when it malfunctions and the ignorance of the medical world makes me wonder where these people train.Do you think it may be some form of dystonia that you have?I have read a little and have heard that some dystonias are dopamine responsive.What are you typically like without medication?

[cathys20 in reply to angelite]

Hi angelite, yes I have been diagnosed with dopa- responsive dystonia and possible fnd symptoms relating to a movement disorder. No cd anymore thank goodness. But always feel like it could come up again if a Dr. thinks I don't fit tight into my current diagnosis. Without medication, or when my medication needs adjusting again I am unable to communicate. Constant dystonic storms, sometimes spasming and contracting, other times; not able to move at all just locked endlessly for hours in my body. Unable to walk or even get myself to the bathroom. Many times drooling from my mouth. Tremors are a constant, even now, and electrical type current in legs and feet. Gait is not good. Left leg drags currently still. I am never able to talk during the storms. For the first two years was unable to talk. You mentioned the stomach issues, I too have this. Throwing up, pain in stomach, gas and belching. My head hurts bad, and I feel like there is too much pressure in it. I feel like I have the worse flu, yet I am not sick, just dystonic. That pretty much sums it up. I am very limited with what I can do even now when I am stable. I am very slow, and tire very very easily. Left leg still drags. But I feel good and am functional rather than when I am ill, I am not functional at all. Can not be left alone or take care of myself. These are the good days, and I am so very thankful. I know you can relate to a lot of it, as I was reading your post so much sounded familiar. Have a great evening, Cathy

[angelite in reply to cathys20]

I don't know how you have coped with it for so long-you must be incredibly resilient! The comparatively brief time that I was a mess was exhausting both physically and emotionally for myself and my family.I'm glad they have put a proper name to your condition and you are able to get the appropriate treatment.Wishing you a peaceful and productive weekend Angela x

[cathys20 in reply to angelite]

I sometimes don't think the illness is as bad as the lack of caring Dr.s for it. We need eyes and ears listening to what we are all saying, and they so need to finally put a label on it, that does not have the word pshcological in it. What body would do this to someone? I have know two people with conversion disorders, once their condition was identified, the root cause their symptoms resolved. CD is usually short lived, figured out and resolved. Someone in the medical field really needs to take this on. I believe there are so many more out there, afraid to go any longer to Dr.s, suffering at the hands of lack of knowledge. Hope I can be of some help to someone . God bless. cathy

[tinahouran in reply to angelite]

Hey I can feel your pain. 10 years ago i was diagnosed with transverse myelitis. I have an atonic bladder and epilepsy. I m9ved 4 years ago to a different state. I have been having complications from my TM and the new neurologist refuses to believe my past diagnosis and has now insisted that i have a conversion disorder. My GP seems to be treating me different now and making me feel like i am an inch tall. Wish I knew what i can do.

[angelite in reply to tinahouran]

Hi Tina,

So sorry to hear that your previous diagnosis has been revoked - did they explain why they no longer think it is TM and why they feel it is psychological ? What test results originally prompted the TM diagnosis ?

I should add that due to a recent UTI ( urine infection ) that rapidly progressed to sepsis, in spite of oral antibiotics, I had to be hospitalised on 3 IV's, plus more oral drugs to take home to clear it. I had to initiate hospitalisation myself, as GP told me I was just tired and to go home and finish the tablets. I had entered early sepsis - he did not recognise signs ! During this time a severe relapse of some of my old symptoms, plus some new ones became apparent. Hospital were aware of these but still ignored them, treating me purely for Urosepsis and sending me home. In total the symptoms lasted 2 months. I am still trying to regain my former level of function 3 months on - balance, muscle power and autonomic/ endocrine all got hit again. It has taken 3 subsequent visits to GP's, subjected to a mixture of both their apathy and anger, to finally get someone to listen and put me under investigation for MS. There are results in notes that I read this time from 3 years ago, when they initially thought I had Encephalitis ( brain infection, then decided no after a clear scan result ) that were very relevant medically as clues to my possible condition but not made knowledge to me. Namely neutropenia ( low immune response ) and abnormal slowed EEG waves ( I had been told EEG results were normal )

It is p*ss poor that patients can be denied the truth of their results , thrown out to psychology without medical support and left to try and recover by themselves.

If I were you, I would be wanting a copy of my medical records so I could see results for myself . You can research what may be medically relevant.

I wish you the best of luck and hope that in spite of your symptoms, you are still able to have a reasonable quality of life,

Kindest regards,

Angela x

PS I take a multivitamin/mineral as insurance and omega 369 as an anti inflammatory - hope you do too : ) x

[tinahouran in reply to angelite]

I was transferred to a trauma haspital last month were the neuro said i had recurrent TM. Upon release a week later my regular neuro saw me and states that she feela its not recurrent TM. I already have heart damage due to my TM. I am having issues with PVCs and tachycardia. Keep being told that it won't kill me. Sinw my recurrent TM i lost almost all feeling on my left side and having issues eating. The speech therapist i saw is concerned that it might get worse. She had called my Dr and basically it is being pushed to the side. Not really sure what to do.

[angelite in reply to tinahouran]

Hi Tina,

Regarding the abnormal heart rythm/rate, I get this too when having a flare up. My heart is fine, it is just the signals to it that get messed up. It often occurs just after a random blood pressure drop - it seems to be my emergency adrenaline response kicking in to rapidly boost pressure and no, it hasn't killed me but it is very uncomfortable and alarming ! So I understand your concern. It is kind of like 'POTS'.

Has inflammation shown on any scans ?

brainandspine.org.uk/transv...

Since it is thought to be auto immune in origin, I would ask you if attacks have occurred after a viral/bacterial infection ? Have they ruled out MS of the spinal cord ?

Have you had steroid treatment for attacks and how did your symptoms respond ?

Sadly, Tina, you have to be pro active these days - persist and insist on further explanation from your doctors. Be in their face ! They seem all too happy to brush our problems under the carpet for an easy life.

In the meantime, our lives are anything but easy !

I would suggest writing down a list of questions to take with you to appointments, also maybe have a friend accompany you for support and as a second pair of ears. Add to your list any symptoms/ correlation between onset shortly after a virus/infection, how long they lasted and if they cleared up completely or remain an issue.

If you can get access to your medical records, I am happy to help you translate the medical jargon !

Private Message me if you wish, for privacy.

Take care,

Angela x

[tinahouran in reply to angelite]

I am not sure how to PM you. I have my records. Also my physical therapist has been trying to get my dr to listen. In fact she is going to try calling her again today. No they havnt tried steroids. My spasms are so bad right now i normally have to have someone help me walk.

[angelite in reply to tinahouran]

Oh bless ! Have you tried a sticks or a frame to help ? I find my sticks amazingly helpful - only need one at the mo . I have spasticity and weakness too.

I am an independent so and so and would rather use walking aids than rely on other people ! : )

I have the folding kind, cheap and readily available at many shops.

If you click on my username at the top of my reply, you can send a PM.

Tell you what, I'll send you one ! Look at your name on the green bar at the top of this page - next to it is a red circle with a number in it, telling you how many messages you have. Click on the red circle to access your messages : ) x

[tinahouran in reply to angelite]

I have one walking stick should use two but because of the nerve famage to my left side i can't use my other arm. It is almost time for me to use a wheelchair. I am trying to avoid this as much as i can. Did you ever have problems with swallowing? Last month i began having this issue. Now i see a speach therapist.

[angelite in reply to tinahouran]

Years ago, I found it a struggle to swallow, lasted a couple of weeks or so - it prompted a camera down the throat - of course by the time I got test this a few weeks later my problem had already improved. Such is the nature of transient symptoms ! x

[starlingwatcher]

You are not alone in your views! Dealing with ignorance is a big part of living with neurological problems that are not yet understood.

I loved reading your post, because yeah it's frustrating! And you summed up the frustration very well!

Have you joined the Functional Neurological Disorders community of FB?

[angelite in reply to starlingwatcher]

Is FB facebook?I am not very well up on these things!

Regarding the post-every so often I feel the need to vent my spleen at the ridiculousness of the current medical system!Especially when I see it happening to so many other people.They even had me doubting my own sanity at one point-only fleetingly before I dismissed it as rubbish!It was like some weird medical conspiracy-Rosemary's Baby!All of them witches!Its like we have come full circle from the dark ages of possession, hysteria and the wandering womb into enlightenment and recognition of disease only to regress once again into the Freudian world of insanity.Perhaps we should all get a drill and have a go at trepanning our skulls to let the demons out!

[starlingwatcher in reply to angelite]

Angelite, you crack me up! Vent your spleen at me every once in a while! You express my rage so much better than I can!! I always think I am Hester Prine from the Scarlet Letter, but instead of having to wear an "A" for adulteress, I am forced to wear an "F" for functional neurological disorder. No one can look at my medical chart without seeing the "f" and rolling there eyes with that, "oh she's a nutter" eye roll. And then when you worry about being labeled they say "you are paranoid". Ha! Yeah, I am paranoid and with very good reason.

And yeah, FB is for Facebook.

Stay in touch! Vent your spleen! And then carry on with learning to live well with this maddening condition.

[angelite in reply to starlingwatcher]

No one wants an' F 'on their report card!You need that like you need a hole in the head....oh ...now that gives me an idea.......!

[starlingwatcher]

Hi Cathys 20 and Angelite,

I just read through your stories and see many similarities to my own. I also struggle with Dystonia with all my muscles being affected in different ways at different times. I have wondered if I don't have dopa responsive dystonia, but because it typically starts in childhood it has never been considered for me.

I did manage to get myself stable, with the support of my very patient husband. I had several months that were very good, and I was resuming an almost "normal" level of activity, when a few weeks ago I punctured my finger while gardening. I had to receive a tetanus shot, and within 24 hours my symptoms were back in full swing. My nervous system is a mess - what is interesting to me is how tetanus is similar to dystonia. So it's long days of solitude for me right now, while my nervous system quiets down. I hope I will regain the strength I previously had.

It certainly is challenging to live with this nonsense. And I struggle with the definition of conversion disorder vs. functional neurological disorder vs. dystonia… the medical community cannot seem to agree on definitions so how can there be any consistency in research, much less in developing effective protocols for care.

Wishing you both comfort!

[angelite in reply to starlingwatcher]

Having done much research during my recovery(let's face it,when you are confined to bed a lot what else is there that takes minimal effort!)I have been able to correlate my symptoms with three main known movement disorders;myoclonus,distonia and Parkinsonism.I was able to demonstrate the geste antagoniste to the GP which prompted her to say that I needed more tests and refer me to the private neuro(who sadly seemed clueless and would not do further tests and seemed unconcerned that I was still waiting for an EEG).I am very fortunate that a lot of my symptoms were transient and the problems I am left with are a walk in the park by comparison.The muscle problems I now have seem to fit with classic spasticity and were quite bad in early recovery but have improved some with time and exercise.I hope your relapse soon calms down and you should maybe explore the dopa route with your doctors.Take care x

[Beveloo in reply to starlingwatcher]

Like to add that's an interesting comment on your tetanus shot! All my problems started when I had one including a diptheoria & polio jab this has been dismissed by all medical professionals over the last 10 years it did a lot of damage so recently been diagnosis of fnd think local psychiatrist decided safe route to go down for everyone concerned but know the USA does recognise jabs can cause problems very unhappy unheard lady from England South west region

[angelite in reply to Beveloo]

Hi Beveloo,

Welcome under the big FND umbrella - kind of like a big neurological reject bin as we don't 'fit' elsewhere due to a clear test / atypical symptoms / medical resource and budget restrictions / mistakes ! It sucks not to have your neuro problems medically acknowledged : ( May I ask what tests you have had done and how your symptoms affect you ?

Kind regards, Angela x

[Shar1967 in reply to Beveloo]

I am too from the south west England, which Neuro are you under? X

[lindyloub]

Seems to me that because of having a Brain Trauma any other illness there likely to be told its a Brain causing your further health problems when I first came out of hospital I didn't have any health problems but gradually over the years more problems have appeared after 2 major surgery's on my bladder which was unecessary I since found out. I simply had a atonic bladder the uriologist thought it might be the problem but then referred me to a gynaeocologist for further investigation the first time he operated I went blue so he had to stop he told me I mustn't have another general anesetic only if its life saving he thought I had problems with my airways if I lay on my back for that reason he was reluctant to try & complete the operation with a spine block because I would still be on my back my own GP referred me to Hospital to check my airways all was ok my GP was concerned if I had a accident I was put on my back to reach a hospital that I would need to wear a pendant with my medical condition but it wasn't necessary in actual fact I think the anaethetist didn't have the airway tube in correctly as each time they sat me up I breathed then put me back I stopped breathing again of course any complainst they all close ranks most problems its easy just to say its your Brain now I'm being investigated as suspected COPD thats one health probem unrelated to the brain just many years of smoking which I have quit just when I think I'm as healthy as I can expect . I'm crushed with another health problem the paralysis I have accepted is part of my life and I must do as much as I'm able but like angelite bing fobbed off

[angelite]

Hi Lindyloub,thanks for your reply.Sorry to hear that you are having a tough time with your health.Massive well done for giving up smoking-not been successful myself yet.I have read your background.Its great that you are a Headway volunteer-I think it takes someone who has experienced this to truly understand and empathise with others in the same predicament.From what I have read it does appear that some of the extent of brain damage can show up quite some time after the initial injury-replastination and reorganisation during recovery seems to be responsible.My own experience of this was with the flexor spasm in my right leg.Although the spasticity came on early(five months after initial start of illness) it was over a year later when the flexor spasm started and the first bout of positional vertigo hit me.It was a year and a half before my strength went up a notch-goes to show how slow the healing process can be-for some it continues for the rest of life. I don't know if the flexor is the last of the damage coming out in me or my body's attempt at a repair that hasn't quite gone right-either way the result is a hyperactive involuntary signal.The positional vertigo seems related to an existing problem of seasonal asthma-usual coughing and wheezing with added sinus irritation that leads to ear malfunction.It seems like my body's hormone/chemical balance has subtly changed.I have certainly noticed more pronounced PMS and the development of burning tongue(9mths after initial illness)at specific times of the menstrual month.The problem is sorting out what symptoms are related to your brain injury and what might be a new issue.A good GP is crucial so you get the referal for further tests to rule out other causes and yours certainly seems concerned and willing to help.I do hope you are able to get some better help for your continuing issues.In the meantime,keep up the good work for Headway-you are a valuable asset.Take care,Angela x

[Nikki31uk in reply to angelite]

Hi I had my 1st appt with Neuro today after rheumatology took me off treatment due to neuro symptoms. Told I may have fnd and am finding that hard to accept. I'm worried my arthritis diagnoses will now be questioned with this label and I'm struggling

[Tewa]

Thanks to all of you for your posts. Helpful to me after over 6 years and still no clear answers except now FND from new neurologist yesterday. And after reading posts, am very concerned about more of the same disrespectful treatment by other docs. How can these drs lump everyone into this category which leave all open to "it's all in your head" dismissive attitudes and non-treatment? Isn't it obvious that something very serious is going on will all? I am now very worried again.

[Tewa]

No, you are not the only one. To attribute all of the very serious , incapacitating symptoms to FND is more than ludicrous! We are taking about medical professionals who are not providing the diagnosis and treatment needed!

I was, just given this diagnosis, after over 6 years of struggling and seeking answers, with many tests, some of which were positive,not all tho, and experiencing disrespect(it's all in your head, see a psychiatrist, which I did , a psychologist, and 4 therapists, and none agreed with a diagnosis of CD) from many, given this absurd diagnosis.

This journey has dismayed, frustrated me and led to such physical disability as progression has occurred. At least my neurologist told me this is not due to an emotional issue.

As I have read story after story since last night, I am finding it unbelievable that so many have had a very similar struggle such as I have..

What can be done to provide more help in the way of making changes for diagnosis, for treatments, for acknowledgment of what all are struggling with?

[Nikki31uk]

Hi I had my 1st appt with Neuro today after rheumatology took me off treatment due to neuro symptoms. Told I may have fnd and am finding that hard to accept. I'm worried my arthritis diagnoses will now be questioned with this label and I'm struggling with no treatment for the arthritis let alone fnd. My rheumy told me to relax and practice mindfulness which I felt insulted my intelligence and very patronizing. I too am at a loss with the nhs x