FND Diagnosis and no critical illness payout! 😢

Hello Everyone,

I have been recently diagnosed with FND after having all the same symptoms as MS! My left hand side doesn't co-ordinate, left eye wont fixate when evoked potentials done also I cant swallow when eating as I cough cough cough..... Lots of other symptoms! My critical illness insurer have stated they cant pay out as my neurologist has stated that my condition can significantly improve with psych/physio help! Has anyone had this done to them by an insurer or does psych/physio help dramatically improve FND?. Thank you xx

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  • I tried to get my pension early due to my work place terminating my contract as it was accepted that I was not fit to do my job due to all the Nuerological symtoms which at the time was pointing at MS. My test came back all clear. I have lost total hearing in one side, atrial fibrillation along with weakness, loss of balance along with all the other Nuerological delights but all this could not be given a name. Critical illness usual lists specific illness names you will find them in your policy booklet, some companies cover more illnesses than others. Pension companies are much the same.

    I had to go down the route of benefits, thank heavens the look at your symtoms effect your independence rather than your diagnosis.

    I hope you find some solutions to help you :)

  • Hi Poppyseed,

    Thank you for your reply that was very kind! My insurer covers total permanent disability but as my neurologist has stated that my condition may get better the insurer wont pay! Its devastating that Im diagnosed with a severe disability but Im getting so much conflicting info on FND, Some neuro's say it will get better and others dont! So I was hoping their was a neuro out there that could give me a definiate expectation. Confused.....😭 xx

  • Hi, I am so very sorry. Another closed neurologist. Oh how I wait for the day when we hear good Dr. stories on a reg basis and not so many still in the dark. Will it help the Psych/physio, my experience is no. I kept going to neuros in the beginning who it was psych issue, so my insurance would not pay my neuro bill. Only to be sent to psysh and told it was neuro issue so insurance would not pay it. And this went back and forth with as a volleyball for two years. I finally through in the towel, and said I"m done. Tried to convince myself I had had a break in my mind. Only to be saved from myself my loving husband and Internist. My husband told me I was the strongest woman, and I knew in my heart he was right, my brain had broken but not by a CV. Oh how I hate those words. Then my internist who knew me well, said this is neuro, I don't care what anyone else says and began treating. PTL!!!! God is so faithful. Stay strong, advocate for yourself, print from these webs what are helpful to support a neuro diagnosis, and then keep searching for the right Dr.s. I have great ones. God Bless, Cathy

  • Thank you Cathy that is so comforting to know that other FND sufferers have had similar experiences to mine! I thought I was the only one out there, Im actually disgusted by the way I have been sent away with FND scribbled down on a piece of paper advising me to a FND website for info.....Hope you are well xxx

  • are you in the states? Please let me know, we could talk. Thats the thing, we are not alone, we have each other, and we know its real. If you are in the states and would like to talk, let me know, I will send you my phone number. God bless and stay strong..

  • I am in the UK. Thank you for your reply xx

  • Cathy, I live in Virginia. Am newly diagnosed after 6 plus years of seeking answers. I would like to to talk with you.

    Johanna

  • Hi Johanna, my email is grandmas16@gmail.com. Please email me and I will give you my phone number or you can give me yours, whichever you'd like. Tomorrow is a busy day but I will get back to you by Monday. Look forward to speaking with you. God Bless, Cathy

  • sorry I don't having any experience on insurance. but your gp should be able to assist and the consultant her diagnoses you . there are some NH's treatment programmes, but only a few. ask to be referred to those hospital closes to your location to help as fnd requires physio but those that understand fnd as normal physio can't. good luck

  • Thank you so much for your comment that was very kind x

  • HI ALL,

    HANG ON A MINUTE,

    IF YOU WANT INSURANCE COMPANIES ETC TO UNDERSTAND WHAT WE ARE GOING THROUGH, FIRST OF ALL YOU HAVE GOT TO INVOLVE THE MENTAL HEALTH TEAMS AND SOCIAL SERVICES IN YOUR AREA, THEY ARE ALL AWARE OF OUR CONDITION. THEN ONCE THEY HAVE ASSESSED YOU AND KNOW THE TRUE EXTENT OF YOUR CAPABILITIES THEN THEY WILL ALWAYS HELP WITH INSURANCES AND ANY OTHER PROBLEMS THAT YOU ENCOUNTER. SORRY TO SOUND BLUNT, BUT YOU HAVE TO GET EVERYONE INVOLVED FIRST IN ORDER TO GET HELP WITH THE SECONDARY THINGS SUCH AS INSURANCE, SORRY LILLYXXXXX

  • Hi Lilly, Firstly the insurance companies aren't interested in understanding what we go through and secondly it's not a mental health advisor or psychologist who decide if you are permanently disabled! The critical illness policies state a consultant neurologist is the person who decides! There is no social services who deal with critical illness policies its nothing to do with them! When I cant work and I have no partner to rely on then my insurance policy is vital for me to live that is the reason I took them out so then I wouldn't be in financial difficulty as I do not claim benefits. Kind regards, Kar xx

  • HI,

    HAVE YOU NOT GOT A NEUROLOGIST THEN??? I HAVE AND I WOULD SUGGEST THAT YOU ASK TO BE SEEN BY ONE

    AS MY NEUROLOGIST IS THE PERSON WHO DIAGNOSED ME;

    REGARDS LILLYXX

  • Of course I have a neurologist that was who diagnosed FND! The insurer will only pay out if the neuro states FND is permanent and there is no prospect of getting better and due to some neurologist not specialising in FND they cant give a prognosis of the condition....x

  • HI,

    I UNDERSTAND NOW!

    YES, OF COURSE I UNDERSTAND FULLY WHAT YOU ARE SAYING, UNFORTUNATLY THEY WILL ONLY PAY OUT IF YOU CAN PROVE THAT IT IS PERMANENT!! AND SADLY , NO ONE KNOWS, I AM SORRY IF I GOT THE WRONG END OF THE STICK, I REALISE HOW FRUSTRATING THIS MUST BE FOR YOU.

    NOW I UNDERSTAND, WHAT I AM GOING TO SAY TO YOU KNOW MAY NOT SIT PRETTY, BUT IT IS MEANT WITH THE BEST INTENT.

    IF YOU CANT GET ANYWHERE WITH YOUR INSURANCE POLICIES THEN YOU WILL STILL NEED HELP-AM I RIGHT?

    I UNDERSTAND FULLY WHAT YOU ARE SAYING ABOUT PAYING INTO POLICIES INCASE SOMETHING SHOULD HAPPEN, BUT IF YOU CANT GET ANY JOY OUT OF THEM, THEN YOU NEED TO,NOW?? SOMETIMES WE HAVE TO SWALLOW OUR PRIDE AND ASK FOR HELP. BELEIVE ME IT IS OUT THERE. I AM SO SORRY THAT YOU ARE IN THIS PREDICAMENT, IF YOU WANT TO TALK MORE EMAIL ME, AND I WILL UNDERSTAND, GOOD LUCK LILLYXXX

  • see Avenuevisio.com and Road to Korea2018 facebook

    Hey there, I have a very similar case also. Are you sports orientated? Do you have a passion for a hobby or sport? This will help you more then anything a Dr can do. You have to start with getting up everyday and find a purpose for that day small steps are the best. Check out the video "The Hidden World of FND". It will amaze you. Meditation and trying to go deep in the brain for relaxing and visualizations.I have seen 2 neuropsyhc tests etc the list is neverending which is like a squirrel cage. So the more you can distract he tthe better you will be with your head to accept what we have and reinvent ourseleves.

  • Where can I view "The Hidden World of FND?"

    Thank yo .

    Johanna

  • Hey, I was diagnosed with FND following a car accident which trigger the shut down in my body

    Although discs r pressing on spinal cord, they say it's FND.. I don't agree but never mind!

    I've found personally that my swimming and doing exercise in the pool helps lots. I've gone from using wheelchair to sticks and having more independence but again I know everyone is different

    My faith in Jesus also helps as I know on my bad days I can trust him and pray and worship him in the crap times

  • Hi poppy I have lost my hearing it's now borderline severe worse on the left side. I have no explanation for how this has occurred. Do you ? Also been told I have fnd.

    Thanks

  • Also I don't accept anything doctors say if they themselves cannot understand the pathology of FND symptoms. The whole thing is a joke with some terrible labels and a few experts in FND getting a name for themselves. As you can see I'm not happy. At all.

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