waste of time

well I went to see a private consultant today I have never been so insulted, she said by the sound of this letter your mri didn’t really show anything so it is FND I said how can you say that within 2 minutes she said FND is so easy to diagnose to us people,

So she examined me and said your pain in your shoulder and neck and back is muscle wastage in my shoulder and arthritis

She said my walking and balance is because I am 59,

My head is getting worse so many people comment to me saying I am getting worse she said FND but I don’t specialise in that so what right has she got to say that

I walked out hoping my number gets called soon I have completely give in

[210272]

Hmmm - consultants should not, under any circumstances, make a FND dx on the basis of normal test results (including MRIs) alone and, expert or not, she should know that, at least. Saying it's age related is a total cop out and I hear it a lot, unfortunately. If you have enough spoons I'd consider contacting the FND Society to ask for their opinion about what happened during the consultation IE not whether or not they agree that it's FND but whether they think her reasoning was accurate regarding the MRI and your age.

No one should leave a consultation feeling insulted or at the point of giving in and I am angry on your behalf especially since you paid for the consultation. What are your next steps? There are some good balance centres in the UK so I'd be inclined to ask your GP for an urgent referral to one of them so that your health doesn't deteriorate further.

[Hidden in reply to 210272]

Thanks for that I was seriously tempted to walk in front of a bus when I got out the place yesterday

When she said us people can tell anyone within 30 seconds if they FND

I said my walking my balance my left arm doesn’t move my neck and shoulders and back I am in agony

My head I have a dull headache every day and at times the pain is unbearable

I can hardly open my eyes and I go lightheaded if I stand still so that is FND

My doctors I am afraid are not interested they just say you have FND it says on your notes one said it is all in your head and we have real patients to see

At the moment I am hoping my number get called

Take care

[210272 in reply to Hidden]

Within 30 seconds, eh? They are meant to take a full medical history before making the FND diagnosis and that cannot be done in 30 seconds. I'd wait until you get her clinic letter before deciding what to do but what she did is not OK and, in my opinion, she has brought her profession (neurology?) into disrepute. Leaving a patient with suicide ideation is not health care as I know it but please stay with us since your voice needs hearing about this.

All your symptoms need thorough investigation so while you wait to decide what to do about this time wasting consultant (I have several suggestions regarding what would have the most impact - this is not my first rodeo) I would ask for an urgent referral to a balance centre and also ask for an assessment for migraine and a tilt table test.

If you want to give me her name (via the chat, if you don't want to go public) I'll do some digging.

My late Dad was a GP for most of his working life and did some digging around FND on my behalf at one point (many people with rare conditions get vague psychiatric diagnoses during or after our diagnostic odysseys) and he was not at all impressed with the way this dx is given or the lack of effective follow up. That was over 15 years ago and, from my observation, it seems to have got worse, since then.

[Hidden in reply to 210272]

She seen FND that was it I said well have you looked at the scan results no I don’t have to

She did test touch my nose with my right hand failed touch my nose with my left hand could not move my left arm,

Squeeze my finger failed on both sides

Reflex one leg didn’t move one leg shot up she oh and said again FND

I said why is my left shoulder so painful can’t do anything with that arm she said because FND is all in your head I said well if that is the case I really hope my number get called soon enough

What she didn’t know is the scan shows muscle wastage on my left side but the scan must be wrong 🤣

[210272 in reply to Hidden]

I strongly suspect she was only taking the MRI into account, not the other scans you've had. Prof Stone has said that MRIs need doing to prove the FND dx to patients and their GPs but also says that the dx should not be made as a result of normal test results alone. Whoever put FND in your notes should have provided you with a rationale for the dx and this last consultant should have explained why the reflex tests were indicative of FND. How did she respond when you told her that you hoped your number gets called soon enough? FND is treatable and if she didn't reassure you about that or indicate what treatments might help you, I don't think she's given you good service at all.

As before, if you want to take further action about this (so others don't find themselves in a similar situation) there are ways you can do this effectively. Unfortunately there are others (eg using the UK NHS complaints procedure) which could be a further waste of your time.

[Hidden in reply to 210272]

Honestly I have one scan in 2021 when they thought I was having a stroke then the consultant said FND and went out next day I was home,

Ever since when I have been to the hospital or doctors they seen FND and basically they don’t look interested in you , ever since I am fighting a losing battle, she seen the word FND from 2021 and ever since everything was geared to that,

Regarding when I said about my number being called she didn’t seem bothered, I explained I am getting worse I need help she said you have FND there is not treatment you have to accept it hence me walking out

Sorry no consultant or doctor have the right to say FND just to make things easier for them or use your age because your walking and balance is crap, my dad shoulder and arm went and he started losing his muscles then he got weaker and weaker he was a skeleton when he died I feel I am going the same way my mum told me today I look worse every time she sees me so did my dad have FND as well

I haven’t got a clue on what to do but at the moment I will never step foot in a hospital ever again no matter what is up with me, I still look at the sky hoping I can go

[Nansea in reply to 210272]

To anyone out there who thinks their FND diagnosis is not accurate, do not give up. I have been sick for over four years, constant pressure headaches with nausea, developed movement disorder, also burning stabbing back pain, pulsetile tinnitus. Was diagnosed early on with FND because all my scans were unremarkable. I was treated pretty poorly by some neurologists. After 8 of them, and lots of prayer, I was led to the right person. I was finally diagnosed with cervical cranial instability and CSF leak. I go for a blood patch procedure next month, and hopefully some relief. I know what many of you are going through, trust your gut. Pray. He listens. Please know that Jesus is with you. I believe the path to my current doctor was opened per divine intervention. My heart breaks for many of you. I know the pain and daily struggles many of you face. I am going to write letters to previous docs about CSF leaks and hopefully help somebody else. Maybe this post will help somebody. Will pray for you , you are not alone.

[210272 in reply to Nansea]

Nansea, thank you for sharing your story and your diagnostic odyssey. Would you be willing to make a fresh post about your experiences in this Hub? I think you might reach more people than just via this reply to me. I am glad you have diagnoses that make sense to you and a treatment plan in place and I hope no one else has to go through what you went through, especially since the dx of FND is not meant to be made on the basis of normal or unremarkable test results alone. Hats off to you for persevering and I hope you will be able to get FND recorded as a misdiagnosis as soon as possible. Traditionally that isn't easy to do but it needs to be so maybe your current 'right person' (I like the sound of them ) will be able to help you with doing that.

[Hidden in reply to 210272]

Well said 100%

[Hidden in reply to Nansea]

So so proud of you for not giving up 8 consultants is frightening and like you say some are dreadful, good luck with everything and hope you get sorted

I won’t give in trust me we know our body no one else does but when the consultant said any consultant can diagnose FND within minutes what chance have we got,

Please let us know how you get on with your treatment

X

[Nansea in reply to Hidden]

I will keep you guys updated on progress. My goal is to keep you positive. I completely understand the depression associated with illness, and almost gave up on seeing anymore docs. I woke up one day with severe pain /pressure in my head, I could not stand related to severe vertigo/nausea. I went to urgent care, they gave me fluids and med for nausea and said follow up with neurologist. It took 1 month to see neurologist(what?), and I called a few to see if I could get in sooner. Then the uncontrolled movements started. First neurologist said he couldn’t figure it out, (pat on the back to him for admitting he just didn’t know,) as all scans were normal. A couple more docs and I was sent to movement disorder specialist in Chicago, but saw doc in training under specialist who did a very brief neurology exam, (I’ve been through quite a few as I’m sure you all have been)He said within ten min. I know what you have. It’s FND. That was very detrimental to my journey. I’m not saying that that diagnosis is always wrong, but I think that is where they like to tuck in many people with tough cases. Nobody addressed the severe daily head pain and pressure, only the movements. Not agreeing with that diagnosis and more docs, I finally found one who gave me a referral to the Mayo Clinic, but was struck down again. Mayo Clinic denied me( I didn’t know they did that) said they were too busy and I should be able to be treated near home. Thank god for my family. I had become very depressed and had to quit my job related to illness. I know how hard it is to keep going, I have felt very defeated. Do your own research and listen to your gut. Accept help offered by family and friends. Truly I know how difficult it is but focus on the things you still can do, the positives in your life. Pray.

[Hidden in reply to Nansea]

I cannot believe how much hassle so many people are having regarding FND and when consultants see them 3 words they dismiss you

I can’t carry on fighting I have given in honestly I look up at the sky and hope I get called

The treatment by these so called professionals is a absolute disgrace we are not people to them we are all just a number,

So many people can’t believe how much I have gone down hill over the last few months but according to the consultants there is nothing wrong with me when the doctor told me it is all in your head and I should stop going and let people who need a appointment have it,

I really hope you get sorted for me I have given up take care

[Nansea in reply to Hidden]

Please, please, keep talking with us. We care and we understand. I will pray for you, that you will be directed to the right person. I had a neurologist at a big teaching hopspital repeat to me over and over “There is nothing wrong with your peripheral nervous system, do you understand me? She repeated it three times then said “ I don’t even know what you want me to do for you. I left there in tears. So I absolutely do not know you or how you feel, but I know depression, anger at the system, frustration, feeling worthless, not knowing what to do next. None of us should ever be treated like that. I’m so sorry you are on such a difficult road. You are not alone. Prayers and hugs.

[Hidden in reply to Nansea]

Thanks for that Nansea

It is frightening the way so many people are treated so badly, I have given in I had a fall this morning walking the dog as my walking and balance is atrocious but I still have to take her people said I should go to hospital I refused i have completely given in I could quite happily sit in the conservatory and never go out again I still look up and pray every night that he will take me,

All because the consultants and doctors are not interested and how they close ranks how they can basically ruin someone’s life because they are so called experts and they know they can say FND and there is no come back to them

From a couple of years where I rescued swans went in horrible water to save them, done so many events for the community was Santa all over December for events now I want to hide away

I said can I be tested for Lyme disease for going in water where rats live and all other wildlife have there poo they laughed and said you have FND

Please take care and have a lovely Xmas x

[Nansea in reply to Hidden]

I had a rough day yesterday as well. I hope you didn’t get hurt with your fall. I’m glad you have a dog buddy. I have one also, I feel bad for her sometimes because I can’t play with her as she would like. As far as the Lyme disease goes, I was in same predicament. One doc laughed at me when I brought it up stating “Ha, everybody thinks they have Lyme disease “. But I really wanted to check that off my list as well. Next doc I saw said “Have you been checked for Lyme disease?” So I was eventually checked and was negative, but if you have any docs at all that would do that for you I definitely would recommend being tested. Simple blood test. It can have an array of symptoms. Why are some docs so smug. Hope you have a better day. Prayers and hugs. You sound like an absolutely lovely person.

[Hidden in reply to Nansea]

Bless hope you are feeling much better today not nice feeling rubbish but it is something we suffer a lot pity the doctors don’t care,

Like you I asked about testing like you they didn’t want to know and said it is FND so basically go home and shut up,

I am getting to a stage where I am telling everyone I talk to when they ask how I am that I am hoping I get took soon I have totally given in got nothing left to give so so depressed, I am totally exhausted mentally and physically, I have no fight left in me

You have an awesome Christmas get that smile on your face and enjoy it

You never give up on fighting for what is right and you get better soon enough please the world needs more people like you in it

[Nansea in reply to Hidden]

Merry Christmas, I will pray for brighter days ahead for you.

[Hidden in reply to Nansea]

hope you a great one and get spoilt I will just hide away most of the day my brothers and sisters are going to my Mum’s I am not going I can’t cope with all the noise and I will get tired easily,

Keep on being amazing

[BossStateofMind in reply to 210272]

I agree doctors must use positive findings versus negative findings. I hope you will find someone who can help and cares. Until then we are the only help we have.

[Birdr]

Make a complaint and ask for your monies back as she admitted she had no specialism! What rubbish these people put out! Pathetic. Take care.

[Shimmyaway]

Might we learn where this 'consultant' is based , so we don't go there too ?

So sorry for your disappointment ..Keep up the will to find answers.

[Hidden in reply to Shimmyaway]

Birmingham she looked at paperwork and said you have FND but I am no expert in FND but that’s what you have

[Shimmyaway in reply to Hidden]

Thanks a lot for the info .. I am in Birmingham too ... with an ineffective OT intervention for FND from the MH trust .. its all they have on offer. You are not missing anything, except a load of jabber...... and I do not have the severe debilitating symptoms that you are having to deal with. There is a specialist FND physio based at the Royal Orthopaedic in B'hm ..you may be able to self refer. Don't give up.

[michelesmith]

so sorry to hear this. I know FND is real and I totally understand the frustration that it brings especially the mental side. Everyday I suffer with changes but the best thing I have done on my own was getting a cocktail IV mix every 2 weeks plus B12 injs. Yes this cost is my out of my pocket, but I do feel a difference. I actually feel it is feeds the brain to function better.

[BossStateofMind]

I have heard the same results concerning MRIs and any other tests. FND does not show up on regular MRIs, CT scans, etc. The main way to identify it is with a fMRI(functional MRI)which is expensive and state health insurance won't pay for. Unfortunately people with FND most pay out of pocket expenses to get treatment or take an holistic approach. I wish you all the best moving forward.