Healthcare is a joke for FND-Major frustrations

I am so frustration with the whole healthcare issue with FND. According to doctors there is nothing wrong with me, I am completely healthy, but when I go to the only Neurologist I can find here in my State here in the US he diagnoses me with FND/FMD, but can't do a dang thing for me. I can be referred to other programs like Mayo Clinic, or Frazier clinic in KY, but my insurance won't approve or deny treatment, they tell my doctors not me that I can go at my own risk. I've been out on disability since October last year due to the issues with FND, and am now on unpaid leave because I can't even get approved for long term disability that I have paid into for 20 years, and can't get approved for social security disability.

I just can't believe that no one can figure this crap out, or be able to help. I've done therapy, (doesn't help), done MRI's, Looks awesome, did an EEG, but was done years before the PNES started. Suffer from Dystonia, Myoclonic jerking, slurred or messed up speech and/or hoarse voice, messed up gait, PNES, pain, fatigue etc.. etc.. It has to be coming from somewhere. All I am told it is psychogenic, and no other testing is done. I am so frustrated, and just wish there were some REAL answers. I just want to get my life back. I truly hate this crap!!! What other things are you all doing to get help? What kind of tests have been done to rule out other things? I would love some help, or suggestions.

18 Replies

  • I'm going thru the same thing you are. It's like it drives you crazy. Now I am seeing a PM doctor he says alot of the symptoms I have, which are like yours it could possibly be an Aorta aneurysm, but they have not done any testing. Just breaks my heart every day. I have 95% of the same symptoms you have. I go to speech therapy & was going to physical therapy but had to stop the pt cause it was hurting me to bad. Now they have me on a Butrans Patch and it is not helping as of yet I have had it on since Friday. They say to take pain meds with it but am out of them also. So if you hear anything please let me know...

    I will be Praying for you also


  • Good Morning, I hear your frustration. And quite honestly I don't think you would get a whole lot of help from Mayo on this issue, so if insurance does not guarantee pay I would opt out on that.They are better suited for cancer and other issues. I left there 15 years ago trying to convince myself I had went crazy and trying to figure my way back. was a nightmare. I was in a chair for two years with drool coming from my mouth, unable to speak most of the time, constant dystonic storms for hours at a time. My faithful husband kept searching for answers. Finally by truly God's grace, an article came in the mail that described me somewhat from the DMRF and we took it to my family Dr. He started me on Tegretol and baclofen and my life began again. The light turned on. There is much more to this story. There is help!!! Please read some of my other posts and you can email directly if you would like.

    I was just to the Urologist yesterday, my bladder and bowels are now involved in this whole neurologic scenario. He was wonderful, but thinks soon I will need to cathe all the time. This thing we all have seems to be ever changing, I wish it would stay in one place, can be wearing. But we keep moving just as long as we can. Remember they are practicing medicine, they don't have all the answers yet.

    I'd like to ask more questions, please e-mail me at or write back here. Was there something that set this all in motion, an accident, physical trauma or injury, virus. Talk soon, have to run, Cathy

  • I have been here 4 years now please feel free to read my story.

    I finally got an appointment with a new Neurologist he has explain it all about the brain not working as I have had a fright my brain has switched on to fight and has got stuck there and each time my brain tries to it switch it back to normal it wont go.

    So this is where we ask what can be done to help tables and appointments with a clinical psychologists to talk to him or her about my life and ways to work around my FND and help me live a good life. been here before so here we go again lol.

    That was over three weeks ago and I am still waiting for an appointment to arrive.

  • Like yourself the same things happened to my self. I was diagnosed at Stanford Neuro Science Ct on the records from Kaier Drs in Denver. Over 200 Neuro visits in last 7 yrs, I have been laughed at by Drs from Colorado Universty. Not once but twice, I was even asked why my arms do not work or why do I walk that way. I have tested poitive for LEMS but they say it is not positive enough. Now I am losing the ability to see. The muscles in and my self partnerd to tell the stories of several patients. eyes are diseased and theire is nothing that can be done. In feb. Check out The Hidden World of FND' and let me know if it sounds familiar. Cheers sorry about typos everyone fingers and weys stink. I still can not get any kind of real help even from family members.

  • Unfortunately you have got an answer, you have FND!

    It sounds like no one has taken the time to explain to you so in very simple laymans terms here we go:

    You are. Standing up

  • Sorry hand shaking caused me to tap iPad screen in wrong place so last message was sent too early!

    So here we go again:

    Unfortunately you have got the answer, you have FND!

    It sounds like no one that has taken the time to explain it to you so in very simple Layman's terms here we go:

    You are standing up and nerve messages tell the brain you are standing up and your body is told by the brain to keep doing this. This is normal. Then.. The nerve misfires and tells the brain you are not standing up so the brain then tells the body you are no longer stood up and the reaction is that your legs go and you find yourself on the floor.

    Another example is that your arm feels normal then a nerve misfires and your brain gets told you have just broken your arm and so this message in the brain sends the response of severe pain which you feel as your brain told you too.

    I spent years (nearly 30 years) before this was explained to me by my neurologist. I spent years trying to find the magic answer but unfortunately there isn't one I'm sorry. This is because electrical messages are getting mixed up in the nerve pathways and it is beyond current science to be able to fix this and so unfortunately there is no cure at present.

    All that can be done is to try and cope with the symptoms and treat them as best they can. Because of these I still find myself visiting the hospital frequently and under many consultants as every severe symptom has to be checked just in case it isn't the FND with symptoms such as "mock" heart attacks, not being able to swallow, severe pain widespread and localised, UTI's to name just a few.i also suffer from now or in the past most of the same symptoms you have. It is such a distressing, depressing and frustrating condition.

    It may be worth your while finding a neuropsychologist to help you to come to terms with what is happening. Also a sympathetic family doctor helps as as and when you are in hospital they can be informed and fight your corner as my neurologist is based at another hospital and with no neurology dept at my local hospital I am passed from ward to ward where no one understands. Once I was in hospital in the orthopaedics ward and they said in comparison to the lady in the opposite bed who had a badly broken leg my pain and symptoms were minuscule - they saw me as a time waster as they couldn't see or understand my FND.

    Another time I was on a general medicine ward with temporary paralysis of my arms and also below my waist. As it wore off and the severe pain came back the doctor decided I was on too many pain meds and decided to send me cold turkey! My family contacted my pain consultant and neurologist who travelled from another area and they both had it out with the doctors and nurses and said during a severe flair up wasn't the best time to alter all my meds! This doctor also decided to take me off prophylactic antibiotics and I suffered with recurrent UTI's due to having to catheterise (from another FND caused condition) until I could get in to see my urologist again.

    Another time I was in hospital and asked to be catherterised as I couldn't self catherterise due to the flare up, they decided there was no need and 36 hours later I was in agony and eventually through begging they did it. Now my GP is clued up she just phones the hospital or visits and explains my condition so these things don't happen again.

    As for having your life back you need to accept your situation and that you still have a life, just a very very different one! It's not much consolation and not what you want but try to find the positives, I can hardly walk now so if I do it is extremely slow so I get to see more scenery as I walk as I have more time to look! Also I can now wear heels if I'm in my wheelchair or my scooter as I don't need to walk on them, also shoes last a lot longer!

    Also try to find a different way of doing things, I was unemployable due to the FND and fatigue and so ran my own successful business for 15 years before I had to give that up. Now I have found I can garden (my husband made some raised beds accessible from my wheelchair). Also I took up art and can manage to draw if I have a good couple of hours, it may take a lot longer but I enjoy the process. I also take time to enjoy watching films, reading factual material and have learned so much in the past 3 years since I stopped working. We also found walks in the English Lake District called " miles without stiles". I can now go on country walks with my husband and our 2 dogs which is something I thought I would never do again- I just found a different way (and cried tears of joy!) So there is hope, you just need to find yours.

    I wish you all the best and please find support through our network here, a lot of us are all experts in FND, qualified by having been there, done that and got the T-Shirt! We may have different symptoms and problems due to our own central nervous systems. We may be strangers but we are united in our diagnosis and care about each other. Good luck for the future.

  • Thank so much! Your post has helped me so... much.   I am newly diagnosed and really struggling to understand this condition. 

    My Neurologist, is very skeptical and dam right rude. The Neuro Physio which I've been referred to has no knowledge of FND. 

                       Best wishes. X

  • I forgot to say in my ramblings that you need to find a charity or organisation who can help you sort the disability money out, they will know things you may never have thought of and with their backing they may be able to negotiate on your behalf to get your disability as being an organisation they will have more clout, just a suggestion but I hope you can find the help you need!

  • Have you gone to site? They can help you make sense of your issues and help you move forward in your SSDI process.

  • I have never heard of it, thank you, I will check it out today.

  • My experience (and what i've been told by many people) is the you get turned down the first time (especially if you are trying it on your own). I then got an attorney who assessed that I was eligible and took on my case for a fee. However, the fee is capped and automatically taken out of your first check from SSA. If you are approved it is retroactive to when you filed so usually you get a big lump sum which the lawyer receives his portion from that. Best of luck

  • May I ask what symptoms you are experiencing? I was too that because I wasn't on a ton of medication, I am still able to drive for the most part, and that I am not depressed and suicidal I didn't qualify for even my work long term disability even though I have put into it for 20 years. Just gets frustrating. Some days are easier than others, but some can be pretty tough. I never know from min to min if I will be ok or not. But apparently that doesn't matter. I also don't have a lot of medical back up, Cause they can't find anything.

  • Well I have many medical conditions. Primary might be that I sustained a traumatic brain injury in 2003. I lost a 30 year career in the time it took for another car to hit me. My cognitive function is continuing to deteriorate and they are checking me for MS. I tried to get disability back in 2004 when I realized that I couldn't retain any information that would help me with a new career. I had no idea what I could do. I had a tremendous amount of medical back up. I don't know what you are experiencing but I would continue to pursue being evaluated. I don't know how many Dr.s i've been to but I was seeing a psychologist because it was overwhelming not knowing what's going on, dealing with life on a daily basis and not knowing when something else was going to happen. I was diagnosed as depressed and many other things. For some reason, years later disability came up and I researched it and found that most the time when you apply for SSDI they deny you the first time. I had forgotten that I had even filed in 2004. I just read on the internet that your best shot at getting approved was having a representative who knew the process and what they are looking for. Once I hired an attorney it honestly took me 3 months to be approved. My court hearing lasted 15 minutes and I was not asked one question. I had met with a psychologist as part of the process who assessed me. My lawyer was talking football with the judge while they waited for this psychologist to call in. He called, the judge asked him of his opinion and what I think it all came down to was a certain score of how many times you would miss work in a week or month and my score was significant enough that the judge thanked that guy, banged the gavel and said "fully favorable". Even my lawyer was shocked at how quick it went. Because I had been denied years before the judge set the retroactive date to 24 months prior to this hearing and I was awarded a lump sum from that past application (24 months is the most they will do). So my suggestion would be to maybe look at that website and see if you have enough information to go forward with applying. If not, you can find out what you need to support your disability. Sorry for the lengthy glad you aren't here live with me on my soapbox lol.

  • Thank you so much, I really do appreciate the information. My story is so very different, I think you truly do deserve disability. I hate to say, I have my doubts some days myself. So a little background, 6 1/2 almost 7 years ago, I lost my voice during a cold. Nothing too big, but after several weeks, the cold had gone, and my voice was still having problems. I went to an ENT, and he told me that I trained myself to use the wrong muscles, and told me to go to speech therapy. After several docs, my on and off voice and even an attempt at stomach surgery to see if my voice loss was due to acid reflux, I was still having problems with my voice. I went to another speech therapist, and their group helped me to get it back, but I have still continued to fight it. They then sent me to a therapist to see if they could help. One of them had me visit with one of their coworkers a psychiatrist because he could prescribe me some medication to see if it would help relax the muscles in my throat. A few days into it my hands started shaking, which quickly moved to my arms flailing around like crazy for the next 4 hours. Then it stopped and released me from the hospital. A few months later I started to notice a slight jerking in my head. That kept going on and off for several months, then I had issues with my arms again, but that time it moved into my shoulders, neck and head. 4 hours later it stopped. Then 2 weeks later it happened again, then a week, then a few days, then every other day to every day. So not only was I having problems with speaking, my muscles were going crazy. I have been through 4 different therapists, ER visits, doctors, neurologists, Doctors at NIH in DC. Throughout the last 4 years the movements have changed from just hands, arms, neck and head to torso and legs as well. I have gastro-intestinal and swallowing issues, problems walking here and there now, all the muscles from head to toe tighten up in spasms, one person called it dystonic storms, or non epileptic seizures, my left hand and right foot tighten and curl, my feet will freeze in place so I can't walk sometimes, the muscles will tighten up from hip to toes, and drop me to the floor at a seconds notice sometimes. etc.. etc.. stupid things can set up me off like hiccups, cold, waking up, sleeping, talking. But heck that shouldn't stop me right? Especially because I work outside the home in a call center. My work long term disability still thinks that because I am able to get around for the most part, and do most things for my self (not all) and again because I am not depressed or suicidal and because I am happy, I should be able to still do a medium type job. Some days yes I could do some of my job, but definitely not all. And really, I still have A job, just not my job, and would have to post for a new one to get back to work, but that shouldn't be a problem at a call center.. oh wait, talking is difficult like every day. I have had one.. count em one day in the last year where I was me, normal, without most movement, voice or walking issues, that was due to a new medication, but even that is not helping now. Sorry for the soap box in return. I just love the fact that because my mri is normal, and all the tests that have been run (which aren't many) come back as normal they say I am fine, I just need therapy. I really struggle with that. I am grateful for this site, and being able to chat with some great people though, it really helps to take the loneliness out of this.

  • I am so very sorry to learn of your situation. Honestly, if I had those issues I would be depressed. I would think you would have enough medical information to push forward. I do know that you have to have ongoing medical pursuits to further support your effort in helping yourself get better. I am surprised that no one has been able to diagnose you. I am currently going through the process of being an advocate for the disability digest. I would just be contacting people who become members (free) to just make sure you are receiving the mini courses and see if you have any questions. Then I would refer you to speak with a representative who would evaluate what you have and tell you either that you don't have enough information and what to do to get it or they will accept your case if you have enough info. all in all it is free info. I wish you the very best.

  • Hi. I am so sorry you are having to deal with all of this without relief. There are a lot of therapies you could look for in your state and the hospital might help. Look for a DBT Dialectical Behavior Therapy group. It is a form of Cognitive behavior. While we usually don't have emotional issues BEFORE our FND it still helps areas in our brain settle down so to speak.I believe it is our amygdala that is hypersensitive. It also blends in mindfulness that really helps me with the pain. You can also get some free guided mindfulness online. Although I prefer Jon Kabat-Zin. You will find lots of helpful hints on healthy living on in 2014 they revised the medical definition to make it a real disease although there is still a lot of stigmatized around it. I encourage you to find a doctor that will work with you. Since my brain surgery I have been diagnosed with low B12 and low cortisol. Getting cortisol has significantly reduced my seizures. I encourage you to keep fighting the good fight. You did not choose this. Let me know what state you are in and I will ask my Stanford doctors if they know of anyone. YOU are not alone!

  • I live in Utah. If Stanford docs know anyone other than the docs at the university of Utah I would love to know who. Cause docs at the U can diagnose, but not treat. Lotta good that does for me or anyone else here that has to deal with this. Because it's not ms or parkinsons, it is nothing here. No one seems to know about it at all. If you can ask I would greatly appreciate it.

  • Bridget lives in Utah. I will ask her as well.!

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