I have been suffering with Functional Neurological Disorder for 15 years, but in the past 5 years it has gone worse, I can't sleep more than 3 hours and I'm tossing and turning all night due to my left leg and arm becomes weaker and during the day I'm having a normal day but of out of the blue I'm dragging my leg, I started having panic attacks and constant pins and needles in my left leg, my speech has changed, I forget things, I have blackouts and much more. The doctors have washed hands saying no cure just try to cope. I have come to a point I want to cut off my arm and leg.
FND: I have been suffering with... - Functional Neurol...
Functional Neurological Disorder - FND Hope
Hello i'm sorry for your luck and body. I was diagnosed 1 year ago. I went from having siezures to now tics and speech problems. My left leg and walking is now messed up. I would like to know how you cope because I fear that I too am getting worse. It takes strong meds to make me normal
Please tell me more about your story and I will mine.
For me it has been 15 years and still the doctors can't find anything abnormal in my scans they are clueless. It has affected my life I can't remember what being normal is. It has affected my vision, my speach I can't even pronounce words or write letters because when I'm writing I mix words. I get confused with telling the time. On a daily basis I get splitting headaches, my left hand constantly shakes and is weaker than right hand which means I can't pick anything heavy or even do gardening in summer. Memory loss as I have sticky notes which reminds me, I used to be a realy good cook but today I can't remember, even the basic food is a challenge. It's been 5 years and I only sleep for 3 hours doctors have prescribed me sleeping pills but they don't work. All this has been stressing me out I can't do it anymore I just want to end it.
I am so sorry. I undestand and know the degree of your frustration. It is so awful that none of us get the validation, support and care we need. This dx is so unpredictable, and progressive too. Without the groups to connect with and share, I don't know how I would cope. We all hear you. Sending positive energies.
I hope they have given you the antibodies test for autoimmune encephalitis. Also tested you for dysauntomia. No one should have to suffer for so long with no answers. Also have thyroid tested, including antibodies TPO and TG against thyroid.
My son is only 13 and we have no support from the consultant it's bad and sad that no one wants to help . As a mum I feel I have let him down big time. Hope things settle for you soon.
I’m so sorry for what you are experiencing. So many people are sent away from their doctors because the doctors don’t know what is happening and aren’t trying to find out. With a dx of fnd it seems they have no obligation despite what a person is REALLY experiencing. There is so much variance in information online (real/not real/psychological/conversion etc.).
I have to say I’ve not heard fnd is progressive...? (I’ve only just been dx’d so still investigating ‘this’.)
I read an article about fMRIs and MS looking at the brain and grey, not white, matter, and changes there. I know Stone has fmri pictures on one of his sites showing changes in people with fnd. Seems there is something in all that?
These expert fnd docs are saying there needs to be a famous/influential/rich person dx with fnd to bring it into the spotlight, increase awareness/funding. But as someone said in another thread here, how likely is THAT?!
I really hope things get better for you somehow WatIsNormal. Even if for today.
A very rich or influential person will probably never exist with FND because they have the money to go to very good doctors and keep hunting for real answers! FND is usually an answer a doctor gives you when they have no real answers. Maybe with some people it’s true but not with most. Most are misdiagnosed or just put in this category because they get a doctor that knows how to diagnose them.
WatIsNormal, in what part of the world do you live?
I live in uk
Do you ever consider that you don’t have FND? Find a doctor that really wants to help you find real answers! 15 years is a long time to go with a ghost explanation. Science has changed so much and does every year. They now know so much more about neurological illnesses and so many can be permanently fixed. Do not give up on finding real answers!
Only way out for me is take matters into my own hands. I had all test done and it was normal, no one is taking me seriously doctors don't have time to see me. I am fed up of life .
Don’t give up! There is help out there for you! I’m feeling very much the same way about my grown son. No one listens! Even though he has many blood tests that are out of range, many medical symptoms and even has antibodies, they still think it’s depression! I’m so sick of doctors telling me that when I know it is so much more!
Please don’t give up, l have had FND for three years, for nearly a year l was in a wheelchair. Mine came on between one step and another. In the end l had to threaten my hospital with reporting them to the Health Ombudsman, l waited 8 weeks with what was supposed to be an emergency referral. Once l started physio and could walk with aids l saw my GP and asked for prescription exercise, which l was given. I also asked for a referral to l believe St George’s hospital in London, it has a specialised department for FND if you see someone there. They send you to the National hospital where you spend a week undergoing tests both physical and psychological. Get tough and demand answers
I live in the USA and where I live, and in general it seems that if they can't SEE anything wrong then there is nothing wrong. I don't think many of us including me get sent to have a video MRI scan done. Where they can see brain activity being done on a constant basis.
Also this dx is often categorized in one term. I bet once studied and researched it would have stages and levels. Like autism and cancer.
Because I can relate with WHATISNORMAL. I don't know what is normal anymore and its been a year. I went from having siezures, to staring, to faint/blackouts, lots of twitches and spasms, now I don't have many items but my left leg is growing weak and it feels like my right is getting all my brains focus. So now I walk with a limp.
I don't see how its not progressive I don't see how it is. What can see is that our brain especially mine treats the new way as the normal way. We basically need long-term care and empathy not "well you have this, theres nothing I can do for you"
What they dont care is that WE don't know what can be done for us (me) either, so we're stuck. Plus we're stuck trying to live everyday some people (me) have to continue pushing everyday to make a living not being able to sit down and treat our problems even if theres no cure at least treat and improve our problems.
I'm sorry that that has happened to you. My problems are similar and I wasn't like this a year ago. I don't know what i'll be like in the future. I don't know what to do anymore but I know ending things will make it worse for everyone else. Plus it's a one way trip so there's no take-backs. Other people are born with deformities and others can't move their bodies at all so everyone has their own prison and freedoms you just need to find your freedom.
I tried going to the docs but they refuse to c me and refered me to a phycologist who only books appointments every 3 months due to funding. I tried crushing 4 sleeping pills thinking maybe I mite get a food nites sleep but instead I stayed awake all nite staring at the ceiling. During the day I'm so tired but I still can't sleep.
I’m sorry for the difficulty your experiencing. My head tremored violently back and forth and I wasn’t able to sit in lecture during school when it first started. That forced me to drop out of university. But I kept trying different things and I’m still trying. Have you tried looking into naturopathy? I think it’s helping me and maybe it can help you? Another idea, I personally did weird things, like throwing a pillow back and forth with a family member to make it fun and distracting. And sometimes that worked. Or I exercised when it was at its worst (keeping myself safe too when I did ). I know it is difficult. I hope you can try to find ways that can help alleviate your symptoms. Stay strong.
Have you tried simple things like trying to work with balls for fine motor skills. A punching bagthat swivels , forcing yourself to move and everyday meditating about what you will try to accomplish. Check out Beyond Sport: Nick Manely on you tube