Functional Neurological Disorder - FND Hope
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Scared and misunderstood

Hi. I am new here. I was diagnosed with FDN last week . The only thing that I was told was to go see a neuropsychologist and that the hospital that the doctor was affiliated with did not have one there. So basically I was told that I am on my own and that I have to find a neuropsychologist and that my symptoms would get worse before they get better and that I am ill. I have had problems with my speech since April of 2016 and still currently have issues. sometimes my speech will be slurred or I talk to fast or my voice goes away completely. I have had tremors in the lower part of my arm, tremors in my mouth and now I limp when I walk. The neurologist told me the first time that I saw her to just ignore it and it would go away. My symptoms still continued. I ended up going from doctor to doctor to find out what was going on with me and I have been told that I had dysarthria, muscle tension dysphonia, anxiety, depression and finally FDN after I went back to see the neurologist the second time. The second time that I went back she told me that that is what I had and that I was ill and that there was nothing that she could do for me. I was heartbroken. This condition is ruining my life. I have had to call out of work a lot because sometimes my speech gets to the point where I am struggling to get my words out or my voice goes away completely. I am always tired and irritated, can't sleep at night and depressed. I just want this to go away. I need help in finding ways to deal with this until I am able to go and see the neuropsychologist in September.

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sorry, it is supposed to be FND

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Morning what a horrid time your having. Just so the lovely folk on here can try and point you in the right direction? Be helpful to know where you live please?

Thanks Lucy

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I live in atlanta.

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If you can, try to get to a Mayo Clinic. I would recommend the one in Rochester though I know the one in Florida is closer to you. You can self refer which means you don't have to have a referral from another doctor. I have read that they have a treatment program there neurophysiologists and some people have done remarkably better. I am awaiting a diagnosis and I'm seeing a neuro at Mayo currently hoping to rule out MS. In August I will be getting a study done in their motion disorder lab. They are very thorough and I highly recommend them.

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Hi there over in Atlanta.....it's Lucy here living my in hot and sunny Brighton 😎

Welcome to this wonderful site full of helpful friends, all struggling with various symptons but happy to support each other.

Most of us on diagnoses, which in itself can take years ..are just given these 2 websites to read and that's it ! Shocking really ...

neurosymptons.org and fndhope.org

I asked where you lived, as I'm aware of a few Neuroloigosts that specialise in FND, but based in the UK.

Did read on here, other day about a global including USA site like this one...will shout if see the message again.

Sorry to hear about all your symptons, I suffer with a weak left leg after foot drop since 2014. Following years of chronic back spasms/pain. So I can only chat about the limp with you really......I still use a walking stick after get tired and if I don't rest, become completely immobile..now work from home and have adapted my life in so many ways to keep going...

I was lucky to see Prof Mark Edwards in London at St. George's hospital and had 5 days 1 to 1 neuro Physio to help me learn techniques to manage my walking.....

One thing that helped me the most is...when limping to Stand still....then gently 'sway' side to side gradually moving your weight to the front of your feet ..then slowly take a step, keep wide stance to help balance...then another step

I do this in the street often, find it kinda 'resets' my brain and I walk without lumping for a little while. It does come back...but give it a try maybe. I also look around a lot, at buildings..trees anything to distract your mind when focusing on walking so much ...I know this sounds crazy, but seems to help me a little

Let me know how it goes..I really do wish you well ....also 'pacing' has helped me lots...try to keep to similar number of steps/activity each day....still a daily challenge, but better then overdoing it one day, only to pay the price the next day..being in pain .....anyway that's enough from me !!

Take care in sunny Atlanta x

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Hi Lucy. Thanks for the tip.

Also I have been waiting to see Dr. Mark Edwards (in December....)since I was diagnosed with FND (weak legs) from a neurologist at St.George's hospital. (I live in UK). Would you be able to tell me if you know any other neurologist apart from Edwards? Originally I am from Korea and now back home, trying to get some treatments such as acupuncture, physiotherapy(they don't know about END though) but unfortunately I've just come home only after told that I should get an another MRI scan/tests in Korea as they think the quality of MRI is really low. I have only one month time here and am getting more and more confused. Literally I am going just crazy..... hopeless.

Would you be able to give me some tips? I am so desperate/hopeless I even would like to see you in person and ask for everything....

Thanks Lucy and sorry for whining.

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Hi..I am in Virginia and it is the same here. My neuro gave me diagnosis of ME/CFS and FND. I actually requested that he not list FND as it is problematic with even ME/CFS diagnosis. He is kind, supportive and told me unfortunately there are no treatments. This was in 2015. My illness and this terrible journey to seek help while continuing to have progressively worsening symptoms started in November of 2009 after exposure to a neuro-toxin pesticide. I became violently ill with a headache that felt like my head was going to explode. This lasted for one night...then left with fatigue, weakness, coordination/balance issues, then double vision(eye drs said it looked like I had had a stoke when he looked into my eyes)....then foot drop and drag...then incontinence and increasingly more fatigue with periods of flare-ups...due to exertion, heat intolerance....sensitivity to lights, noise...jerky movements, dropping items, swallowing, chewing, choking, voice changes, falling at times, sleep disruption due to muscle spasms and pain. For the past three months I have been having myoclonic tremors. Neuro out on indefinite medical sick leave, having to find a new neuro in my area. My life has narrowed down to basically doing nothing. Prior to this illness I had a full and fulfilling life as a holistic health practitioner, artist, writer, hiker, camper, dancing, dating........ I am irritable so much of the time due to pain and the extreme frustration with the medical care and drs who are either dismissive, rude or think it "is all in my head." I have had very few drs who are supportive and respectful. Some recent trips to ER and an overnight stay in hospital was awful. Signed myself out both times due to each dr not understanding or believing my diagnoses...one took me off the medication that had been prescribe over three years ago. I have, on mine own, requested evaluations and on-going sessions with Mental Health professionals to explore any underlying emotional causation issues...with none found. This still does not eliminate the "it's all in your head" attitude. I could go on and on about my negative experiences in the past 7 1/2 years, but just wanted to give you some support and understanding of what you are experiencing, and to let you know that this is happening for so many. Sending you gentle hugs and prayers.

Tewa

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Thank you so much. I'm glad that I joined this group because I literally felt like I was loosing my mind. I have been going through the same thing with doctor's being dismissive and rude and telling me to ignore it and it will go away. I know that we will get through this and I am also send in you gentle hugs and prayers. Stay strong, do not give up.

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i just joined this group as well and i understand how lost you are feeling. the diagnosis is almost as bad as the disorder, because it makes you feel so helpless. as someone how has been living with this for over 2 1/2 years, i can tell you that things get better and they get worse again, but that you cant give up. I know it's hard, but staying positive and surrounding yourself with people who want to help you is the best advice i could give

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I have felt the very same ways...so many times. When I have a lengthy period with flare-ups, crashes, scheduling yet another appt for help and only get more of the same......I have felt like I was loosing my mind and also would begin, at times, to question myself. ..am I in some way causing this? do I not know myself enough/am I in denial? Blah blah blah. Then when well meaning friends would say...have faith, you can heal yourself if you are positive, visualize yourself well and so it will be....again pointing the finger at me...same as the drs...it all me...all in your head. Arrgh!

My neuro who gave me the diagnosis suggested I do research. I am so glad that I followed his advice as I have met so many others with the same struggles. I felt so alone. Once I connected with others it helped me to gain support, understanding and suggestions for helping myself.

Received a phone call a while ago from a neuro- surgeon that my PCP referred me to in error. This dr was so kind and supportive during out office visit. A rare neurologist indeed! She told me my issues were neurological, but not in her area, as she is a surgeon. Her office note/report supported my symptoms as neurological, the myoclonic tremors maybe MS and other statements documenting/supporting my symptoms as neurological/physiological. I had contacted her via email with a question. Again, in our conversation, she was kind and supportive, saying " you have been dealt some bad cards. " Please let me know the results of the EEG and any other tests the new neurologist( who is male and dismissive) orders." Just what I needed this morning for affirmation.

Thanks for the hugs and prayers. Keep reaching out. This group and many others are so helpful.

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hello bubblelicious23,

You are in the right place, this group of people are awesome, and always willing to help in any way we can. I am sorry you have to join the FND group because this disorder is not fun, and can be ever changing, and can turn your life upside down in so many ways.

Doctors.. grrr.. I hate it when they just kick you out and tell you to go find someone else on your own. I have had so many of those, and it does not help with this what so ever. However, keep looking, there has to be someone out there that will be willing to help you. You need to feel comfortable with that physician as well. And truly I don't think if you just ignore it, it will go away. I am sure that none of us would have these issues for years on end if we could just ignore it to make it go away. what a joke!

I also deal with Dysarthria, muscle tension dysphonia, some anxiety, depression, myoclonic jerks, walking issues, non epileptic AND epileptic seizures, dystonia etc.. There are things that they can do, they just need to actually try, Giving up is worse for you than not trying to help. There are some medications that can help some symptoms, but not all I believe, but some relief is better than nothing.

I really sympathize with you regarding the voice issues. My issues started in the voice that I know of. There may have been a few others things before that, but those were single things that were treatable. My voice went out on me during a cold in Dec of 2008, and since then, the longest I have had my normal voice is 6 months consecutively. But I have never been able to beat that time. I have been through multiple ENT's, and speech therapists. I did learn some tricks to try to help with the voice when I was just dealing with my voice being hoarse, but the spams hit my neck and make it so it is extremely hard to get anything working. I deal with the dysarthria as well. There is no rhyme or reason to it, one moment I may have a hoarse voice, sometimes stuttered voice, and sometimes difficult to get any voice out at all. The last time I had my voice more than a word or two was last Oct 2016. Because of these issues, I have lost my job, and am trying to get disability, but not easy.

I wish you the best, if you would like me to try and give you some exercises for your voice, I can certainly try.

Cheryl

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Thank you, I would really appreciate that

My voice has been doing this off and on for a year now. Last night my body just went crazy. I had the tremor in my mouth and my arm, I was blinking rapidly and my neck started twitcing. It scared me so bad to the point to where I almost went to the ER, but I remembered that it is all apart of this condition. I hope that I will find the right doctor soon.

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Wow, So I don't know how to even say this the right way.. but what your going through is like looking in a mirror. I hope that sounds right. I deal with the same things, and it can be so scary. But you are right, going to the ER would just cost you a lot of money for them to say, there isn't anything we can do for you. Its part of FND, the miserable ever changing disorder.

Has your GP ever put you on any type of medication to see if it could help? I know in the past I have had Xanax to help with moments like what you had. It helps to calm the muscles down, and may help you to fall asleep for a while. I know in the past, that used to help me out when my body would start going crazy. I don't suggest using it all the time, but on days like that where you just cant stop might be helpful.

Ok.. Voice. So my voice as I said before went out from a cold 8 1/2 years ago. I can't believe it has been so long. It has changed from the hoarse to both hoarse and I am guessing Dysarthria. From the definition, it sounds like what I go through. You can do most of these on your own, but if you have someone to help do the back of your neck and shoulders, it is always helpful.

I would try first with massaging your neck muscles. Massage the Platysma and stermomastoid muscles, with your thumbs and index fingers.. kind of pinching like, one side then the other, back and forth from your jaw to your collar bone. When your neck starts to spasm, those muscles can get really tight.

Massage the muscles in your face, cheeks, jaw, around your eyes, This is one that can be helpful to have someone else do, and can help you to relax more.

Ok, next, move to the middle of your neck around your voice box. You will feel that you can move it side to side. This is actually good for your voice, especially for the muscle tension dysphonia. It helps to relax the muscles .

In the same place, I want you to move your finger sideways from the top of the voice box from the top to the bottom. In the middle of the voice box, you will find a dent or a dip. Push in on that spot. It will feel like you choke a little. While you push on it, Hum. The object of this is to try and get the right tone out of your voice. Basically back to normal. But you really do need to relax the muscles around your throat and neck.

Also try humming.. not just a normal hum, you want to push your lips out a little and feel the hum buzzing in your nose. It should tickle in your nose. This is helpful with the muscles that are working against you with the muscle tension.

Take that humming feeling, and put words with it.. start with M's, P's, Oh gosh I can't remember them all. But hum the words through Me, Ma, Ma, Mo, Moo.. same with the P's.. Pe, Pae, Pa, Po, Poo.. It sounds goofy, but those can help with getting your voice back as long as you don't have spasms in your throat.

It is worth a try to see if it will help. OH.. and drink lots.. You need to keep your throat hydrated. No hard coughing, and try not to yell.. If you can at least. you want to try to be gentle with your voice.. Oh, just remembered. take your voice, and start low, and say "woop" with a low sound to a high sound.. going up the scale.. Oh gosh how do I explain this one.. kind of base to soprano? go through the music scale low to the highest you can go in saying or somewhat singing that woop word.

I hope this all makes sense. If you need help with it, I could always try skyping and see if that would help. I am not great at it any more, because the spasms don't allow me to do it much. But I would be willing to try. I hope this helps. keep me posted.

Cheryl

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Please do look at neurosymptoms.org and fndhope.org. where you can join our Facebook group/s for mire help, support and guidance.

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What if we don't have and Don't want a fakebook account?

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This is bollocks! Over 3yrs for a diagnosis and still waiting for treatment since Dec last year and I live in London, close to St George's, the so called, go to place for fnd treatment. Was super fit prior to this, which is the only reason I'm able to crawl.around on super challenging days, like the last four I have had. Agony, stiffness, exhaustion and very close to throwing in the towel.

I don't want to live, or rather exist like this. No job, no treatment, no support, no cure.

It's bollocks!

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Oh and no bloody benefits. Although they sympathise, they think I can manage except when I can't.

How do you people live like this?

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Hi bubblecious 23 you will find a great support group here for you. The community is wonderful. There are Facebook groups to support you if you choose as well. Go to the FNDhope.org and watch some of the physicians that have been interviewed. It should help as well. There are some healthy living tips in there as well. It is in our heads. It is in our brains. Our brains do not send and receive signals properly. And the harder we try the worse it gets. It is like athlete fatigue. So instead of working harder it needs a distraction. Besides psychiatry look for a neurosphysical therapist as well. Dr Stone is training many.

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