Help me Please!!! I am so scared & confused...:( am I even on the right community???

I was just diagnosed yesterday after having Sotoseizures for 13 years now & then Dec 5th, 2014 I got sick & couldn't talk right now I stutter, my arms swing, my head turns to the right, my mouth twitches, I hurt from head to toe. PT & speech therapist say its cause I am so tense all the time...I feel like now I am just "Crazy" when the doctor said yesterday (1st time I've seen her, Neurologist) said it is Psychiatric I lost it all I can do is Cry!!!! I begged my husband to leave me after 18 years he don't deserves this a Crazy Woman. Naturally he wouldn't & I am kinda glad but I am scared to death!!!! Any suggestions??? How can I hurt & stutter & flail my arms uncontrollably for 6 mos & this be all in my head??? Seizures for 13 years now all this!!!! I am at a loss!!!! PLEASE HELP ME! PLEASE

16 Replies

  • Hi there, I'm so sorry to hear how scared and sad you are. The symptoms of FND are random and frightening and if you read the older posts on this forum you can see that pretty much all of us have experienced all of the symptoms at some point. My message to you is that this is NOT all in your head. Your symptoms are real. or fndhope are very good sources of information.

    When I was diagnosed I refused to accept it and worked twice as hard to battle with my symptoms every day. I then had a complete breakdown and have been off work since and receiving the correct treatment from pain management, my own doctor and also counsellors. I still stutter, walk into walls/doors, breakdance (spasm) around the bed at night and don't feel my face or arm and can't remember my name on good days.

    It's hard not to push people away or become isolated but embrace the support of those you trust and ignore the judgment of others. I've realised that I wouldnt wish this condition on anyone and we are all amazing for living with our symptoms. Take a look at the websites and also consider joining the FND Facebook page for support from fellow FND folks.

    Keep posting and talking to people xxxx

  • Thanks so much for your kind words. I did join the FND Facebook page. I am really trying hard to accept this & continue on the best I can.

  • Hi, You are at the right spot. Please know we are all hear for you. Please read some of my other posts when you are well enough and have the time. It is definitely in your brain but you are definitely not crazy. Our brains simply for lack of better terminology misfire, it sends incorrect signals to the rest of our bodies. And since the brain is our signal center when it gets messed up we get pretty messed up. I have had this since 1998. Don't buy into the lie that it is all made up in your mind. Thats Dr.s who if we don;t fit into their little box think it can't be medical. After you read some of mine and other posts I think you will feel a whole lot better. And Praise the Lord you have a good husband, it is for better or worse, sickness and in health. I have been married for 41 years, my husband has gone through a lot with me along with my children, they are such a blessing. Stay strong, don't give in or up. God Bless, Cathy

  • Thanks!!! I am so glad you have your wonderful husband & kiddos. And I agree about not fitting in their boxes. And God Bless you also.

  • Give information to your Neurologist on the websites mentioned below and tell him to look up the work of Prof. John Stone in Edinburgh and Mark Edwards in London. Ask for a referral to Mark Edwards' clinic at the National Hospital for Neurology and Neurosurgery: he has a team of 2 physios who specialise in FND. And whilst an element of CBT is involved in their brain retraining approach, this is not because they think it is in your head. All the best.

  • Where is this Natoonal HospitAl?

  • I can relate I'm on oxetallar xr

    armour thyroid for low thyroid

    Plus my diet is low carbs, high protein, High fats from Essential oils, I am in bed about 10pm

    I do Vocabulary Builder on my phone as well I'm glutin free and sugar free and diary free for my own St May be u need a thyroid panel done too my life has bee. Hell 48 years all most so bad must be on Ssi

  • Vocabulary builder sounds like something I need to do too!!!

  • Hi TaZmommy,

    I am sorry you are so distressed.Please do not worry about your sanity-most of us on here were told our symptoms were all in our heads- it's a real slap in the face shock at first but after a little time and knowledge we come to realise that this is modern common practice in cases where standard tests have not proved positive for evidence of neurological illness.It also appears common where protocol has not been followed or mistakes have occurred.

    Problem is that things can be missed/not show up on scans or bloodtests so docs often shunt us off to psychology after a 'clear' scan/test with no further investigation,possibly to save time and money on more elaborate tests, in some cases.This was certainly my experience and the experience of many others if you read around the posts.I am wondering what tests you have had done ?

    True conversion disorder (physical neuro type symptoms produced by emotional problems ) is exceedingly rare and usually quickly resolved.

    I would be interested to know if any head injuries or viral illness preceded your symptoms.

    I am amazed at the number of new people joining this site on an almost daily basis- either we are all suddenly going nuts ( yeah, right ! ) or something in the way that the medical profession is dealing with neurology has changed.It seems that many recognised conditions that were previously treated as distinct illnesses now seem to be under the FND title.In it's pure form ,FND is supposed to be considered neurological in origin, however, docs appear unable to agree on this and you will find many that still subscribe to the belief of psychological origin, as per conversion disorder.How confused are they ? !They expect us to accept a 'diagnosis' that they themselves don't understand ? !

    A dysfunctioning brain can cause all sorts of strange,painful and scary symptoms but you will find that many on here have experienced something similar to you and knowing that others have been through this challenge can help to alleviate the fear.

    Kind regards, Angela x

  • Angelita, since 2000 I have had 5 heart attacks, open heart, lots of stents, 2 years ago I was diagnosed with TB & given the meds for a year & sotoseizures for 13 years now. All they have done since all this started in December was an MRI of the brain & eeg. The neurologist that I went to see this last time was gonna run tests & such till we told her I had sotoseizures then it changed & she said oh you have cd. No tests are anything. I went to her 1 1/2 hours away to try & get answers and all she did was tell me that. Then she asked me why I was crying and asked does your husband abuse you or something. Which the answer is a big fat NO!!! He treats me like a queen. That I thought was so wrong. I guess this is why it hurts so bad. It just makes me feel like a failure.

  • Hi Tazmommy,

    You have certainly been through the mill in the last few years.

    I am assuming the MRI and EEG were pronounced normal ?

    By soto seizures do you mean non epileptic attacks ?

    They asked me if I had had a childhood trauma- kind of felt like a slur on my family ,like they were insinuating that I had been abused in some way.Not a nice feeling, agreed.

    You have nothing to feel a failure for- we are not doing this deliberately,for attention,or because we are emotionally 'weak' etc I know that some docs seem to treat you like this.One doc seemed to be suggesting that I had Munchausens when I was in hospital as it was my 3rd visit on the advice of the NHS helpline.I was suspected Encephalitis but never got the guideline tests other than MRI which was clear.Unfortunately it often shows as 'clear' in the early stages of this illness.Hence, bye bye madwoman off to psychology with you.

    Five months of elevated white cells,two months swollen lymph nodes, positive Romberg test and positive reflexes all ignored in favour of a psychological diagnosis- how very scientific !

    This should illustrate how neurology has changed dramatically in the last few years.Their new rule seems to be if it's not on a scan it doesn't exist.MRI is good but not God- it can't pick up everything.

    I have a question regarding the heart attacks if you don't mind - did your heart stop during any of these and deprive your brain of oxygen for some time ?

    Kind regards, Angela x

  • There was an interesting programme -Horizon it was I think - about 2 years ago about the subconscious brain. They had various imminent neurologists. They asked them all giving them a sheet of A4 , to mark on the page the area of the brain which could be called 'conscious' i.e. which we actually can control. They all marked off an area about the size of a postage stamp...

    Our brain does all sorts of things we are totally unaware of. Even the stuff where we think we are consciously engaging our brains for (such as speaking) has been shown to be far more complex and governed by the subconscious to a greater extent than was previously thought. Given that there is so much space -about 98%of the side of A4- for these subconscious systems to go wrong, often in ways that the neuro prof community do not yet understand at all, we do not need to feel guilty about the fact that the source of our problems can't be seen on a scan, or even that we might have been wrongly labelled. The psychiatric diagnosis which gets so randomly handed out is just a part of this lack of understanding.

    Over the last 5 years I have learned that whatever this is, this affliction which can rob me from time to time of my ability to walk, talk, think, even stay conscious and upright, all the medics (and I) can do is learn to manage it as best as we can, and to live to the full within its sometimes limiting confines. My other growing realisation from all my searching in early years is that even if they did suddenly say 'oh yes, this is what it is, this test proves it 100%' with most neurological conditions you are still no further forward. A physiological label is not the great miracle working answer we sometimes think it might be. Drugs rarely cure these sorts of conditions, they simply help you manage it to a greater or lesser degree. And we can all do that already.

    Hope you are feeling less alone and less afraid. Keep strong, and keep believing in your own ability to survive -and thrive - and in time you will find your way.

    God bless

  • Hi Mal,

    Whilst I agree that a physiological diagnosis makes no difference to how your condition affects you,it has been my personal experience that it certainly can affect the respect, treatment and access to further guideline diagnostic tests/outpatient care that you can receive.

    I endured some degrading comments/manhandling by 'professionals' in hospital.Although I was offered drugs by neuro at 1 year post illness I declined on the grounds of side effects and asked for physio instead.I was denied.Why ??? My GP seems to look no further than Psychological as cause,which infuriates me in the face of so many red flag,textbook symptoms and positive infection/neurological evidence.

    I also believe that giving a psychological diagnosis to patients because they can't figure your condition out can be harmful in some cases,causing people to carry the additional weight of believing they have mental health issues where none seem to exist ,as well as having to deal with the challenges of their symptoms.Unnecessary stress.Surely 'medically unexplained' cause was a less damaging title to put such cases under, without the psychological inference,which clearly does not fit all.I am also aware that new symptoms can go uninvestigated once this label has been given,passed off as all part of your illness when they may be unrelated.

    FND = Frankly No Diagnosis in my opinion.In some cases it appears to be the new solution to saving money on tests and lightening the workload.

    Medical profession,do your job properly instead of swiftly laying the blame on the patient for convenience !

    Sorry if this is a little strong but I can only go off my experience !

    I guess this explains why I never went back to doc after the FND diagnosis- I don't think I could hide my frustration ! Given the delicate structure of the brain and it's processes, can you be sure that your aneurysm is having no effect at all ?

    Rant over,angry file put back into bottom drawer at back of mind !

    You take care, Angela x

  • thanks for the laugh. Frankly no diagnosis is sooo true. I love it. I completely agree with you!!!

  • My heart goes out to you. It's difficult to hear anyone tell you it's all in your head. I started responding " exactly! It's all in my head! I have a brain injury and it has changed me. I'm glad you are finally realizing it!" lol most the time they don't know what to do but it stops them from saying it. I find it surprising that a neurologist would tell you that without even doing any tests. I would definitely find a neurologist who has a background of working with complex situations like MS, Parkinsons etc. I have discovered after realizing i've been having physical issues since at least 1998 when I had surgery to remove part of my long intestine (and it was just because it stopped IBS or crohn's etc) He called it colonic inertia and at that time it wasn't a well known diagnosis. It sort of felt like if they couldn't figure out what was causing it then you get put in a generic box. That's what the FND diagnosis feels like. You have a massive amount of what feels like serious symptoms and because you haven't connected yet with the right doctor you just go crazy because all you want is a diagnosis that will connect the dots of why all these strange things are happening. I'm learning that it takes a long time to get diagnosed. Especially when you have complex medical symptoms. They have to rule things out. I finally found a neurologist who is very well known for working with complex issues and MS. just finding that has taken some weight off my shoulders. I find I panic a lot and research even more and it does nothing but zap me of my energy.I'm trying to learn to take it one day at a time. Not to over schedule my self with too many appointments. I wish you all the best in this journey and know that you are not alone.


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