Wrong diagnosis

[Ottaw]

Hi, For the past year and half I fought with neurologist because I didn't believe in their diagnosis and I was right, at the end I was diagnosed with Relapse Remission MS. Please remember most neurologist if they can't give you a proper diagnosis they will label you with FND so if you strongly believe that's not true don't give up, have them to run blood works to role out vitamin B,D ,lympe disease, syphilis, Hapetitis A B D and if you suffer from migraine. Keep track of your symptoms. I wish you all the best.

[Hidden]

You are so right. My daughter got a summary diagnosis of fnd at a Dutch hospital four years ago. Her symptoms were countless and very serious, actually terrifying. One year later she was firmly re-diagnosed (needless to say by a different team) with hemiplegic migraine. Most of the symptoms are now either gone or under control. HM is rare, can be pretty crippling and present in a myriad of ways.

All the best to you and well done for not believing in this curious illness.

[Ottaw in reply to Hidden]

I am so happy that finally they were able to diagnose your daughter. I have Hemiplegic migraine as well so I could relate to, just be careful of the side effects of the medications. Take care,

[210272]

Yay - I'm so pleased you've finally got an accurate diagnosis. I'd be grateful if you would report the mis-diagnosis of FND to the admins here and ask whoever diagnosed you to report it too. Sorry you had to fight, glad you did.

[Ottaw in reply to 210272]

I live in Canada, do you live in Canada?

[210272 in reply to Ottaw]

No, I am in the UK where FND is over- and mis-diagnosed a lot

[Ottaw in reply to 210272]

I am so sorry to hear that, do you have tele health medicine that you could speak to another doctor virtually in another country?

[210272 in reply to Ottaw]

Thanks but it's OK, I got rid of the 'functional' label/opinion in my medical records many years ago and have an excellent local neurologist

[eviedotty in reply to 210272]

what process did you go through for this to happen can I ask....I am presently with the Ombudsman having my case investigated

[210272 in reply to eviedotty]

I got re-diagnosed with the condition I have and that was enough, at the time. The UK Health Ombudspeople requested a report about my case but they were not deemed 'fit for purpose' at the time and it would have involved more unpaid admin so I body-swerved that. Hope your's is better - from a Canadian I know well, I think they might be so I hope you can help them help other patients in this situation

[Ottaw in reply to 210272]

My dear friend, hope you are doing well. It's been a long journey and exhausting. Our health system is no better. In our to receive a proper diagnosis I had to go outside of my community. One day soon I will do my best to help others. Take care,

[eviedotty in reply to 210272]

when you say rediagnosed do you mean the first diagnosis that you had before FND or did they just say its still FND am not what your answer is sorry...its the not fit for purpose that throws me a bit and just wondered which part was not fit for purpose

[Ottaw in reply to eviedotty]

Hi, I was misdiagnosed, without further investigation I was told it's FND. If you look at the FND website there are conditions similar to FND for that reason the neurologist can not be so quick to say you have FND. I hope I answered your question.

[eviedotty in reply to Ottaw]

my circumstances are exactly the same as yours but I had a dystonic event and was not allowed to recover having had the rescue meds they carried on and my performance was just so awful I came out of the whole thing with medical post traumatic stress disorder and am still having issues with the MPTSD...your case has give me some hope I was not investigated at all...they just assumed dystonia has a lot of similarities to FND and therefore it could be and thats bcs fixed dystonia is on the list of symptoms but I dont have that I have generalised dystonia which is totally different in that when it goes into the respiratory muscles things get so bad the arrest team attend me and I have also spent time in HDU so to have FND tied up and a doctor standing over you shouting you can breathe if you want to is not a good place to be and that has happened and when I couldnt open my eyes through an event so much force was used that I now have permanent damage to the eye muscles that move the eyeballs around and so permanent eye damage

[Ottaw in reply to eviedotty]

Please, don't give up, it's hard but we can't give up.

[210272 in reply to eviedotty]

Yes, I got re-diagnosed with a rare neurological condition which I'd been diagnosed with several years earlier, prior to going to the 'sleep clinic' where a sloppy neuro-psychiatrist tried to stitch me up with a 'functional' dx, without being able to explain what 'functional' meant or whether it applied to the condition I have when I am in episode or in remission. Not a good experience and one that broke my trust in the medical profession for a long time.

At the time when I looked into the UK Health and Parliamentary Ombudsman they were deemed 'not fit for purpose' on several counts including; lack of transparency in the way they operated, a tendency to close ranks with doctors against patients who had concerns about their diagnoses and being too bureaucratic. I hear there have been some improvements lately and hope your system is better than ours was.

[artmom]

That’s incredible you’ve finally got a diagnosis. How did that come about? Had you previously had mri scans and lumber puncture that were clear? Or did they finally carry these out? Hearing your story is very helpful/hopeful! I hope you don’t feel too bad at the moment.

[Ottaw in reply to artmom]

I was told it's a early stage of MS and sometimes the MRI won't show the lesions so I need to have another MRI in one year but based on my symptoms and number of relapsed I had I was told it's RRMS. I am happy about it because now I know what it is. So, please don't give up.

[Paddoodlz in reply to Ottaw]

I am in Canada too. I had to go to third party service and got neurologist in USA . He reviews every scan, lab....and determined the MRI they said was normal by Canada drs isn't . He did say I have fnd but as overlay to other condition. He suggested blood work. Got it done and it showed extremely high levels for one area. Lab said see dr asap. Dr said it's fine. It's a constant fight and so tired. Back to the USA dr for opinion again but not sure what to do from there.

[Ottaw in reply to Paddoodlz]

I totally could relate to your frustration. I don't know which part of Canada you live but try to see a doctor outside of your community.

[Paddoodlz in reply to Ottaw]

I have seen 4 neurologist all outside of community. I am in Ontario as well. Neuri have been refused to see and I was told I can't go to hospital because no one will treat. Apparently the one hospital I had to go to flagged me with fnd

[Ottaw in reply to Paddoodlz]

That's exactly what happened to me and now I am waiting for a referral outside the community. Have you tried a good naturalpatic doctor?

[Paddoodlz in reply to Ottaw]

i see a great chiropractor - family friend which helps. Ijust got bloodowrk showing very high platelets - lab said see dr asap - spoke with told all if fine he is not worried. So we went back to our third party service sent them the lab info and waiting again.

[Ottaw in reply to Paddoodlz]

I wish you all the best. Stay strong.

[Paddoodlz in reply to Ottaw]

Thanks and you too!

[eviedotty in reply to Paddoodlz]

can I ask what is overlay and what exactly is the differences between a diagnosed condition for example mine is dystonia and cavernomas I know them and recognise how they behave there is very little after 20 years that I wouldnt be able to tell you about them...but FND as an overlay...where and how does the sit...not getting this and am feeling that my drs will be looking for an overlay outcome and this is causing me anxiety as I have no clue

[Paddoodlz in reply to eviedotty]

As the dr explained to me an overlay is a condition over top of and masking another. In my case they have diagnosed the fnd and are looking for the main condition that is affecting everything else. I hope that helps and you find the answers

[eviedotty in reply to Paddoodlz]

I have it the other way around I have MRI scans and blood work reports that tell the doctor exactly whats wrong and we have worked with these for years and very successfully in fact I am the best I have been for years and now while I am at the best I have been for years they give me FND overlay so doesnt really help sorry all it has done is give me something to worry about that I dont have symptoms for so I find myself looking for these symptoms that are not there and am now constantly and so worried that am scared to leave the house by myself and the life I built over these past years is now gone completely it is too risky for example to go swimming if there is a chance that I get out of the pool to find myself paralysed from the neck down or if am out at the shops and find all of a sudden am double incontinent and drop to the floor....none of these symptoms belong to the pre existing conditions that I have lived with for some 20 years so a change in diagnosis with no symptoms is not making sense and I wish it would so I would know what am working with...

[artmom]

That’s interesting. I feel pretty good at the moment. The fatigue I was experiencing is more or less gone. I have some things still but realised this morning, for instance, that I’d not had a headache in quite a while. This feeling better is also confusing having spent quite a while feeling much worse. So I guess now I try and keep going feeling better and make the most of it!

If your dx is clinical rather than from tests, how come they’re saying ms and not still fnd? Amazing!!

(As an aside, I had an mri some years ago that showed ‘some subcortical sclerosis’ on a joint ‘without active inflammation’. I’ve never really known what this means...in case anyone does know!)

[Ottaw in reply to artmom]

Majority of people with FND have seziour or epilepsy these are the common symptoms, to find out if you really have immune disorder certain blood works needs to be done.

[Chingona]

I’m so happy for you that you finally received the right diagnosis and the encouragement is very appreciated!

[Angela71]

Am over the moon for you! Am going though same had you ad I will fight it all the way! Fantastic!

It's too easy for them to stick a label on you and call you miscellaneous.

Best wishes in getting treament

Xx

[Ottaw]

Please don't give up, I don't know where you live but if you have access to virtual tele health contact them. If you need further information please let me know. Take care,