Functional Neurological Disorder - FND Hope
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Is it FND? Do I have rights to request other elimination tests?

I have been under a neurologist for 5 years due to deterioration of health after a severe flu episode back in 2013. My health has deteriorated to the extent where I could not get out of bed for months due to being so poorly. I have been trying to get help from my neurologist explaining my symptoms in detail but up until recently when my GP did a referral to a CFS doctor, he was saying all my symptoms were migraine! Despite turning up in a wheelchair due to severe weakness and feeling so poorly I couldn't stand up, he was still saying migraine. I repeatedly said its not migraine what I am suffering from, and the only way I can explain how I feel is that I would expect to feel this way if I was just about to die, but it can last for weeks!

I saw an endocrinologist about my symptoms but it was like he had been informed by a very angry and stubborn neurologist that I did not have CFS but I had FND. FND was never explained to me or brought up prior to my CFS referral, therefore I obviously did not trust my neurologist or get any reasonable explanation as to why he had all of a sudden changed his diagnosis and why he thought it was this other condition.

I have some questions that I am hoping other people with an FND diagnosis may be able to shed some light on. Any information, knowledge, advice etc would be much appreciated:

1) During my last neurologist appointment he shown me the door and said "I am 100% certain that it is FND and only FND you are suffering from. You disagree so there is the door. I am not doing any other tests and wasting any NHS money when I know what it is".

I then explained that the only tests of elimination he has done were the lumbar puncture, CT scan, MRI scan 5 years ago and that no other auto immune diseases had been eliminated, or heart problems etc. I also asked if I could have a letter explaining all tests done so far so I can see what has been eliminated. He refused and said he doesn't need to do anything as he knows what it is.

My question is: Do I have a right to request certain tests to eliminate other conditions and do I have a right to request a letter explaining what tests have been done and what has been ruled out?

Secondly, my neurologist said in order for me to be diagnosed with FND I need to be hospitalised for at least 1 week and I cannot see a specialist FND psychologist until I have been observed in hospital and diagnosed. Is this true?

Can I not be referred to an FND specialist to determine whether they think it is FND as an outpatient?

I have had a baby recently and I do not want to leave her, she is my world which is why I have to get better and fight for my rights and want to get better so much.

This leads onto my next question. I have direct payments to help with my care. If I have a bad relapse where I am bedbound, are there any agencies that can help disabled parents provide care to their children? I have been past from pillow to post, Adult social care say its not them as they can only help with my care, children's services say its not them as its due to my health why I might struggle taking care of my baby. No one seems to know anything about who can help me.

Also, what is the difference between FND and CFS? The severity of my episodes are directly related to both physical and mental exertion. Can this be FND?

Is severe nausea and severe flu like symptoms to the point I feel so unwell I am unable to move and want to die to stop the suffering, part of symptoms relating to FND?

Can pregnancy improve and even eradicate FND symptoms? I have become pregnant despite appropriate protection and knowing how unwell I am, everyone advised me to abort. I could not go through with the abortion, mainly due to a traumatic experience I had several years ago where I had to terminate a pregnancy where my baby was very sick, and I ended up in theatre. Due to various reasons I couldn't do it, and this pregnancy is like I have been cured. If FND is psychological, how can hormones in pregnancy stop symptoms?

I know I have written a lot of information and its all over the place, and I just hope some people read this and get back to me with advice.

Thank you very much for your time.

A xxx

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Hi,

If you need help battling for support then there is advocacy help on the FND Hope website. I don't know if you are in the UK or elsewhere.

You have a right to see your medical notes. They are yours and should be covered under the Freedom of Information Act in the UK and I'm sure if you are US based there should be an equivalent. If all else fails have a word with your local disability hub, charity or CAB (if UK).

It does sound like FND - FND is NOT PSYCHOLOGICAL. There are cases of misdiagnoses, like any other disorder or disease, but for FND it is usually right 95% of the time, which is higher than a lot of diagnoses. It does not preclude other diseases - as much as doctors like to dismiss everything you suffer from once diagnosed. You do get doctors using the newer term of FND and then treating you like it's "all in your head" which it certainly isn't. Past psychological traumas are a risk factor, doubling your chances, but never the cause or the "answer".

A lot of us do suffer from chronic fatigue like symptoms and as my husband has CFS we can find many commonalities. Your neurological symptoms would have been distractible on examination. So when you were asked to count backwards from 100 taking 3 off each time the weakness would have resolved and also other testing the neurologist did without you realising.

It's a software problem rather than a hardware one. The messages are not flowing through the right channels and are interfering with your brain functioning. There is no disease. People can often get better, sometimes spontaneously and can certainly improve their quality of life with the right advice and techniques.

I was diagnosed as an out patient in the UK. It may depend if you are having the seizures or not. You may have migraine too. I get migraines without headaches (and yes it's possible).

FND commonly starts with an infection, an episode of inflammation, or injury, but some never know why or how.

We tend to be the type of person that are high achievers, the ones that keep going and don't give up, even when everyone else has.

Don't push yourself or you can get worse, sometimes very suddenly. It's like playing Russian roulette with your condition. You may have a few days in bed, a few months or in some cases years (sorry to be pessimistic, but I just wished someone had warned me of just how bad it could get if I didn't stop).

I know not trying goes against our psychological make up, but the more you fight the more you can loose. You need to redirect your "not giving up"element of your life. You need to optimise your health. If you have other conditions, get them under control, get your sleep into a routine (hard with little ones). There's good information on the FND Hope website under Healthy FND Living. It benefits CFS too as my husband will attest.

Your mood can drop like a stone if you are tired, over do things or catch an infection. They are currently researching the link between movement and mood at St Georges, London. Personally I found B6 helped me on the mood front, but we are all different and there is no panacea.

Certainly get tested for common things like infectious mononucleosis (glandular fever, mono) that may have been part of the cause and underly some of your fatigue. What we commonly suffer from is a lack of micronutrients: vitamin B12 and D, magnesium and more. B12 has to be above 550. It can take months to work. Same with vitamin D needs to be above 500. We can only get 10% through diet so that's a supplement and sunshine/blue light box. Sunshine helps make serotonin too.

Maybe if you were taking folic acid when pregnant that was helping, or something you cut out. Folic acid has been found lacking in some FND patients. B vitamins work together, so if you have problems with one, you can upset them all. It's difficult to know if it was your pregnancy improving your symptoms. Hope can be a powerful drug too, expecting a new life. I'm not sure there's much information on FND and pregnancy.

If you have your vitamin levels tested (which is reasonable to ask) or already had them tested then ask for the actual number. They can say "normal" when it's less than half of what we need.

If you are pregnant again then speak to your midwife about what it's safe to take. A midwife is an independent practitioner and they can pack a lot of clout. They will be the link to help for you - if they are not FND aware, as so many are not, then give their name and contact details to the FND advocacy team.

We need a higher level of vitamins than the normal population. That's because we need a therapeutic dose rather than the RDA's that are a preventative dose - personally I can't advise you on how much it's safe to take if you are pregnant. Certainly hit the fruit and veg, healthy living for your gut. Vitamins and supplements can take up to a year to work. I know they use B6 for nausea in pregnancy, but I'm not sure how much so ask your midwife or doctor.

Sorry I'm a bit scatty today and the bullet points help me. If you have a reprieve that's fabulous. Don't over do things, you still have to be careful as FND does reoccur.

I hope this helps. If you want me to clarify something then please mither me or the rest of the community.

xx

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Thanks a lot thinkin for your reply. Ive already started B12, and I will definitely get an independent blood check done when my pregnancy finishes. I am/was a high acheiver with the 'never give up' attitude and a lot of the things you say resonate. I have had a significant amount of trauma in the past 5 years which also could be a factor.

Hope now scares me because when I feel well I get hopeful that I maybe able to walk outside and take my baby for a walk, and it seems to make the bad times worse, the fall becomes greater. Almost like im being tormented 'here is the life you could lead' but now heres the suffering for 20 hours out of 24 a day. The pain in my heart is so great sometimes i think it will break, just watching how wonderful and amazing my daughter is and that I am unable to give her everything i want to and that when she gets old enough she will start to understand and even feel my suffering.

I get the feeling that i will need a lot of support when my baby Brandon is born, as if i revert back to the state i was in pre-pregnancy i just dont see a way through it. My never give up attitude has been drained from me, and i never want my babies to suffer because of me.

Thanks again for your advice and support, its very much appreciated.

A xxx

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Hi in England you are entitled to seek a second opinion. FND does not need in patient diagnosis. Look at FNDHope and you will see details of neurologists who specialise in FND and who offer treatment. .

Ask the hospital for your notes the neurologist cannot stop this and complain about their attitude. You can use PALS but a stroppy letter to the Chief Exec of the trust normally gets better results.

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Thank you very much, i will look into this now i know i dont need to be hospitalised. i felt like the neurologist was pressuring me, almost backing me into a corner. I will also contact PALS as other options should have been explained in order to reach a diagnosis.

Thanks again

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Hi. Since you are asking to receive information about yourself you need to do a Subject Access Request and have a copy of the information held on you and an explanation of any specialist terms used. This is done under the new Data Protection Act. Go to your Health Board’s website and look at their Privacy Notice for whom to address your request to. The Health Board has a limited time to reply.

Good luck. I’d also ask for 2nd Options and if they are refused write to the Complaints Manager where the doctor works.

There is also an organisation called Support 4 Justice. Have a look at their website too to see if they can offer help you are looking for.

CAB is also a good idea as some centres have solicitors. It may also be worth a call to the Law Society to see if they keep any lists of solicitors and advocates/barristers who do pro bono work.

You’ve had a right run around- but remember the saying “do you want to fight me - I’ll bring an army”.

Cheers

Lou

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Love it, I feel im ready to bring my army now :-).

Thanks for your response.

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1) In the USA, you have a right to your medical records. If you are willing to pay for tests, you may get more tests, but you may have to shop for a doctor willing to do the tests.

2) Your neurologist's statement that you "need to be hospitalised for at least 1 week and cannot see a specialist FND psychologist until [you] have been observed in hospital and diagnosed" is not true. A patient can be diagnosed in an outpatient clinic based on positive physical signs, unless the patient's symptoms are not present during the appointment, as is often the case for non-epileptic dissociative seizures. Your neurologist seems confident of his diagnosis, so why waste money on hospitalization? While waiting for an FND psychologist, you can read the book "Overcoming Functional Neurological Symptoms, A Five Areas Approach" and read or listen to the Kindle version of the book Functional Neurologic Disorders, volume 139 of the Handbook of Clinical Neurology.

CFS) CFS may be a type of FND; the cause of CFS is unknown. When you say, "The severity of my episodes are directly related to both physical and mental exertion," that could be FND. The exertion-induced symptoms may be caused by an erroneous belief deep in your brain about energy utilization, based on what I've read in an FND book. Supposedly the body's organs do not get drained of energy like FND patients tend to think.

Nausea could be FND.

Pregnancy may improve FND. The brain is super complicated, with close to 100 billion neurons and lots of molecules that can influence it, so it's unknown why pregnancy often alters FND.

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Thanks very much pickleweed. Im going to purchase the book you mentioned. Before becoming poorly i was a bodybuilder (figure athlete) and held down three jobs. I am starting to think there may be something in what you said about a deep belief relating to energy utilization as i have gone from being the most active person people know to the opposite.

Thanks again for your advice :-).

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Using your smartphone's voice recorder, you might be able to make some self-hypnosis recordings to ease your flu-like symptoms. You can record something like, "Relax. Imagine your stomach and gut free of discomfort. You can get better. You will get better." Here are some of my recordings: drive.google.com/open?id=1x...

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FND should only be what it is, once it has been proven of everything it isn't. I think even most with FND, in years to come, will find we have something that doesn't yet have a name, or isn't known to be part of some other condition. Even if everything is negative, and FND is the only one left on the table, you should still push for more. It is the only way we drive the medicine. As the medicine grows and learns, our answers will come.

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Thanks for your reply. I am not in denial that i could have fnd, but as you say I thought other possible conditions should be ruled out first, thats all i wanted so i could be sure im treated in the correct way and not go on to suffer another 5 years and then later to find it is something else. Changing neurologist and taking action as soon as my babba is here .

Thanks again

Ax

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