Functional Neurological Disorder - FND Hope

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FMRI Question?

Hi,

Has anyone had success in getting an FMRI to help their brain function better? Upon my most recent re-surfacing of FMD after 2 years in remission, I’ve had complete memory loss, planning gone, organizing, depression, etc. I have 3 little boys to care which has become increasingly difficult. This illness is so frustrating, but I’ve always been functional. Now i’m barely!

Help!

11 Replies

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I wasn't aware of fMRI being anything except an imaging technique - not therapeutic. You can get some magnetic techniques rTMS that do show some impact on depression and the like (though the evidence isn't strong) - is that maybe what you are thinking of - or of course I could just be being ignorant. Either way good luck

It is an imaging technique, but with my memory gone completely at 40, I was hopeful they might be able to find “something” to help me be more functional. It’s awful! Not sure how much longer I can keep this up. Thanks for the reply.

How are you?

Well I wish I had better news! I got put on Valium 15mg/day to help the constant twitching & movements in the night. It helps, but it’s not restorative sleep & certainly not good for memory. I am trying low-dose Lithium for my severe depression, but it’s like if I can’t get proper sleep nothing is going to help this depression or my brain to heal! I’m not really able to take care of my kids, but they of course love me anyways. Fingers crossed something works out here! I want to stay around for them, things got so bad this year I almost ended it.

I did do a neuropsych evaluation to see where we may be able to help me function better..I still grocery shop, put away laundry, workout occasionally, walk my dog, take kids to movies. I just miss the person I was taking them to sports, play dates, sleepovers, me going out w/ friends, etc.

My dream is the newer magnets “stimulated transcranial magnetic stimulation” where they do an EEG to individual the treatment to each person. They should be FDA approved next year & I hope they work for me to get off all this medication that I know isn’t good long term. I’ve read some research they can restore memory

Sorry to hear that. I understand x

Hi, I did read somewhere that professor Edwards the leading FND neurologist for England had FND and gave his self an fmri which proved part of the brain the amygdala is damaged but as there is no way yet to treat this there is no point now in giving anyone with FND a fmri as until they can find a way to treat it the nhs would be wasting money on us. I’ve had a journey like everyone else on here, disgusting treatment by professionals until getting to Professor Edwards in London and an actual diagnosis from him. 6 months later I had 1 months inpatient program at London hospital for FND. They are unable to cure FND so they teach you techniques to deal with symptoms. Every time you overdo it or get Ill all the symptoms or new ones return with a vengeance. When I read the FND symptoms I originally had 95% of them now I’m left with about 10% these are still life changing but I now have some quality of life. We all just want our life back as it was, no one can yet tell us this will happen. It’s an illness that hardly anyone has heard off and as yet no one can cure, we are just on our own to struggle on the best that we can. My heart goes out to all of us but especially those with young children it’s a constant daily battle.

Thank you for the information! I’m not liking that it’s damage to an area of the brain we can’t restore, but what are ya gonna do. I’ve had this dreadful illness for 10 years now and was doing pretty well in remission. Until I got 2 viruses in 1 week and faced a lot of stress, now I’m barely hanging on. I won’t go into all the details, but I feel like I’ve lost my brain & it’s not coming back which is frightening. Somehow I’ve got to get more functionality for my kids, I’ve never had issues taking care of them. 😭 My sleep is terrible too (not helping brain) and I can never nap..it’s like my nervous system won’t shut off

When I first got I’ll i ended up living on tramadol and diazepam just to try to ease the constant pain and shut down my brain to get some sleep then I got really ill with a virus and was sick all the time so stopped all medications. When I got assessed to go inpatient they told my partner they couldn’t accept me on these drugs as I wouldn’t be fit enough to participate in the program. All I take now are the b vitamins which help the brain. The constant pain now is like a dull constant ache which I can live with but when overdoing it, it becomes out of control again. Twice this month I’ve been unable to shut my brain off and have resorted to 1 diazepam and have slept ok. Hate resorting to drugs but like everyone need to sleep. When your told no drug will help you just pace yourself, it’s hard to pace until you know you’ve overdone it when symptoms return. Vicious cycle. With young children it must be totally overwhelming, my heart goes out to you. X

Hugs - unfortunately its unlikely - even if they do find differences in signally its such a new technique they don't really have targeted therapies - but good luck with it. Personally the only thing that really help me is the Alexander technique with these guys - itmalexandertechnique.org/a... - which helps me manage the movement symptoms hugely - many hugs - hope you do find some answers