Hi guys i hope this is the right place im posting on, its took me nearly 3 yrs to actualy write on here i think because i didnt know if fnd was real or not as docs dont really understand it, i was diagnosed by a consultant but my own docs have never really said much about it as they dont think its real. It started about 3 yrs ago my doc thought i had a small stroke (thats when i was told it was fnd)i was 39 at the time i have thyroid problems b12 deficiency also which can drain me alot so i put everything down to that. I went to a private doc who done all the test for lupus which came bk negative. Iv had nearly every symptom of fnd but thank god i havnt had any seizures. Sorry im rambling on. I wanted to no if any1 else gets bouts of fnd? Theres periods of time (2-3 weeks at the most)were im ok and get on with life which is brilliant but i no its coming bk with a vengeance and can last anything from a week to a few mths. Then i get really forgetful, slurred speech, nervous, dizzyness, fatigued numbness etc all the horrible symptoms that come with fnd. Iv read alot of stories on here that some people dont get a break at all from it i was wondering if any1 else gets it like i do. I really appreciate any feed bk as im still struggling to cope with this as we all are.
Love and light Debbie
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Dinky12
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Hi there Debbie. I have times where there is a reduction, or elimination in symptoms. I find that if I am careful with how much energy I expend, I can keep symptoms away. Eg. 30 mins. Exercise equals 30 mins. Rest.
Good morning, the answer to your question from me at least is Yes... I get severe flare ups and then they settle down.am I ever completely ok? No, but am able to manage much better at different times... seasons are a big factor for me. I’ve just had 5 of the list miserable weeks, but I think new med Dr. put me on is settling things down. Hope this answers your question even just a bit..also, yes it’s real and yes you belong here. Our brains glitch, usually something sets it into motion.. God bless, Cathy
Thanx Cathy im having 1 of those foggy brain days between that and droppin everything lol driving me mad, glad im here now as i now no its real and im not goin mad x
Hiya Debbie I started drunk walking last July 2019. Two months before, I had been diagnosed with a heart condition. Having had extensive tests, cardialogist decided my walking issue wasn't linked to my heart, and I was referred into neurology. They initially said "you're not us... your cardiac" 😱 My GP was clueless and I wandered about for a while being a 'medical mystery or intriguing' My whole journey has been over 12 months now, they too queried silent stroke, but nothing showed up on a test result.
I have good days and bad days. I can walk at most 1.5 miles before I drunk walk. This did go as low as 4-6 minute walk, on a bad day. Some days I use a wheelchair to aid my mobility (though I'm not yet at the stage where I could be friends with this accessory 😂)
I'm not totally convinced I have FND as it's the diagnosis that's comes from "not sure what to do with you, or why you are doing this" let's allow her to go away with some sort of explanation.
It's a weird, little known about disorder, with no guarantee of a fix and no timeline. I find this incredible in this day and age.
Hi Dicky-ticker, glad to hear ur having a good day as they are far and few between, every good day is a blessing .im the same as u drunk walking after a while. I feel as though if they cant find something like stroke, heart problems, ms etc they say its fnd ( which is very real) but i always feel let down or looked over by gps as though its not real or im makin things uo cause tgey dont no wat to do with me. But hayho the struggle goes on lol thank u for ur reply.
My daughter has fnd. She is 12 now. I read everything I can on it to somehow be able to help her. She has flare ups. The symptoms that keep her from doing pretty much 80% of her "normal" life last 3-4 months out of the year. I feel for all of you..
It's horrible to watch as a mother. But you asked if others had the same symptoms, I thought I'd share. We are far from understanding what is causing her many issues and symptoms. But knowing we are not alone is a big comfort!!
Hi there, it's interesting how you mentioned about your heart issues, I started with heart attack 9 yrs ago, a few since, unfortunately I'm one of those that problem can only be found by angiogram. 4 yrs ago started crab walking, always veering to the left, sometimes even leaning to the left. Then full body jerks and slow speech. Like my mouth can't understand what my brain wants to say. Lately losing fine motor skills, my hands don't understand. I've always thought that blood clots are linked to neurological problems, like what they are finding with covid. Being regional area in Australia, it's harder to access any help. I'm on disability pension. Takes so long to get a referral, then appointment, then actual time with specialists. Neurologist basically said it's FND until I develop more symptoms. No guidance what to do next. Thats why I research, but only believe half. All blood tests done, all scans , MRI done, so nothing more. I do hope that you find something that helps. All the best.
Hi Moniren, i hope ur well. I do side walking also and over last few mths everything had got alot worse as in my hands arms legs and feet. To see my neurologist tomaro as hes found nonspecific white matter on 2nd mri, im just hoping its not MS. Thank u so much for ur reply as every bit of info of other peoples symptoms help me understand more.
How did you go with neurologist, if you don't want to say, that is ok. Just hope that you get answers. I think that is why we are on this site, to see if us 'normal people have answers, doesn't seem like medical people do. All the best.
Aww hi sorry i havnt bn on here in a while. Well the nonspecific white matter apparently isnt normal BUT its normal for me🤔 the good side is its not ms or anything like that, still FND🤦🏼♀️ i dont get it to be honest. Like every1 else here all i wana know is wats wrong wit me an how can it be treated. My neurologist is sending me to see another specialist sorry cant remember all ins an outs brain fog lol. Il let yas no how i get on an who im goin to see.
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