Anyone diagnosed with FND?

[NatureMakesMeSmile]

Hi all. I'm new here. I've had a neurologist diagnose me with fibromyalgia last year and a different neurologist told me this year that my symptoms are stress related (after I looked at his write up I saw FND). I know have a third neurologist who wants me to have an MRI which of course isn't scheduled for another week. I am having difficulty speaking, weakness and pins and needles in my right leg and foot, and exhaustion. I read up on FND and sounds like that's what this could be. It's just so difficult right now not knowing. I'm getting really frustrated with myself and getting sad in general, and there's no one to talk to, you know?!?! Anyone have similar experiences?

[Kit10]

Hello.

🧸Sounds like you could use a hug - maybe a bear could help.

Strange you should say that, I've been reading about FND recently too and wondering whether it might be a better fit than MS for my experiences, or maybe I have both ... The websites say it's possible.

😱😱There are also suggestions on some websites that MS may be triggered by stress, but it's never been proven.

I'd be interested to know what happens with the MRI. I had 3 before an MS diagnosis, the first neurologist said I didn't have MS, mentioned FND, and referred me to a 2nd neurologist, the second ordered another MRI at a second hospital, said there was something she couldn't see properly and sent me to a 3rd hospital with a higher spec machine. It all leaves me with nagging doubts about how sure anyone can be anyway. And an urge to post reviews of MRI machines on Trip Advisor! (This one plays a radio channel of your choice, this one lets you bring a CD, this one leaves you with only the awful din of an MRI machine to listen to ....)

No, no, I'm not in denial!

(Brief summary of what I understand from what I've read - FND = Functional Neurological Disorder, symptoms very similar to MS but caused by stress related "software problems" in the brain, not by "hardware problems", may go away of its own accord, helped by psych interventions similar to PTSD treatments, meditation, EMDR etc)

[mrsmike9]

Have not heard of this but please post what your MRI said! Best of luck to you!

[Jesmcd2 CommunityAmbassador]

Hi NatureMakesMeSmile sounds like you're going through a heck of a time! 🙁 I'm really sorry! I don't know anything about FND. But it sounds like you're Drs are staying on top it?!

Going down the 'Google' trap, without a DX can make an imagination go nuts, in my personal opinion.

Find something to take your mind off of everything!!! Keep us posted 🤗💕🌠🦈

[carolek572 CommunityAmbassador]

Welcome to the forum, NatureMakesMeSmile ! Glad to see that you’re determined to get a proper diagnosis. Let us know of your MRI results, okay? In the meantime, you can look at mymsaa.org for more resources. Keep Smiling

[twooldcrows]

don't know anything about it ...sorry ..hope you get some good answers to all that is going on for you shouldn't have to be going to the guessing game ...bless you and much patience to see you thru this for stress is terrible for anyone ...good luck for answers..

[kycmary]

WOW I have never heard of FND but please keep us updated on how things are going. I'm adding you to my prayer list. Mary

[hairbrain4]

MS isn't exactly easy to diagnose as there are several different diseases that mimic MS. That's why it's important that the Dr uses several different tests before the final determination. I had an MRI, EP (Evoked Potential) & a lumbar puncture (LP) before the Dr would definitely diagnose MS even though he was pretty sure just after the MRI as I has 9 active lesions. My brain lit up like a Christmas tree on the one with contrast. So be patient & don't try to diagnose yourself. It's good to have as much knowledge as possible so you can carry on a conversation with the Dr & not feel like you are in the dark. The internet info can make you a little crazy too. Good luck with everything. In the mean time keep us in posted & join in on the conversations! Someone is always here if you need to talk.

[BlanketTime1]

i once had a neuro who found out i had coeliac as well as a thoracic lesion. he saw me for years. one year i developed dystonia after ataxia and suddenly he decided it was all in my head. really??🤬 i went to see a shrink for a few months. i was in her office when she rang him and told him absolutely none of my symptoms were psychosomatic. tee hee

i enjoyed that. i fired him and went to a new neuro. whenever a neuro tells someone it's functional, i first wonder if the patient is a woman b/c hey, it's still the case that doctors are likelier to tell a woman it's in her head instead of looking for the cause.

you know there are other illnesses that mimic ms. there are also really rare diseases. and guess what? a doctor who tells someone it's in their head instead of trying to help the patient is breaking their hippocratic oath. it makes me so angry. also, if all the women told they had a functional disorder actually had one, fnd wouldn't be rare, would it?🤔

it wouldn't hurt to see a counselor, but that doesn't mean any stress or depression is at the root of your illness b/c guess what? (lazy doctors), chronic illness causes both. don't give up.🤗