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Finally have a diagnosis

had the neuro today and have been diagnosed with functional neurological disorder.

very unexpected and been quite weepy today. i stopped thinking it was ms a while ago because i was diagnosed with b12 deficiency. thought i could put everything down to that, but neuro said if there had been nerve damage to give me the symptoms i have, it would have been evident in the mri.

i watched him doing a neuro test on my legs, and i remembered something i had read about FND, so i knew then what he was going to say.

he told me to go to the neurosymptoms.org site, which i had already read because of this forum (thanks)

i asked about evoked potential and he’s referring me to have that done, if only to put my mind at rest that his diagnosis is correct. he was lovely, really.

next step…he’s referred me to a doctor in the city who has an interest in FND (said she’s great!!), also physio and psychologist.

(((Hugs))) Sounds like your diagnosis has come out of left field so it’s no wonder you’re feeling weepy - it will take time to come to terms with it all. Your neuro referring you to a colleague with an interest in FND sounds great.

Good luck and best wishes.

thanks mitzi. seems like such a misunderstood and under-researched condition :confused:

Hi. Have a look at fndhope.com and then come onto the facebook page. It is indeed a very under researched diagnosis but on the positive side there is the possibility for recovery x

I was going to say the same! You can apply to the private FND Facebook group via www.fndhope.org I’m glad that you have access to a doctor who understands FND. Mine does somewhat but it isn’t his speciality, however, he’s been really helpful referring me to others who can help. I still suspect MS even after my diagnosis of FND in January, but I’m going for a second opinion and will ask about getting a 3T MRI (as opposed to the less powerful 1.5T), Evoked Potentials and even an LP though I don’t really want it but would do it to be sure. Feel free to PM me x

I’m glad you’ve got a diagnosis. At least you now know what you’re dealing with. I’ve read about that as it has been mentioned on here a few times. Best of luck hunni and hoping you get it under control xxx

i have just been diagnosed with primary progressive ms but am a little happier as i have waited approxx 3 yrs to have an anser to my problems

I was diagnosed with recurring/remitting MS 2 weeks ago after suffering episodes over the last four years. For the last 7 months have had numb legs,feet and lack of balance. Also occasionally either leg just gives way.I am now about to get a blood test to check for infections prior to getting meds from specialist team. I guess my feelings are the whole"limbo" thing. Totally frustrated with the speed in which things progress. Everything is just so slow. Does everyone find this?

Yes! Glacially slow. I have FND, second neuro appointment has been arranged and the possibility of MS has emerged again with new symptoms. I saw my first Neuro in November who thought treatment would be via the Chronic Fatigue Services. Eight months later and I’m on a waiting list but there is still no sign of a start date. No clue when the second neuro appointment will be.

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This is an old thread, but thought i’d update as now a bit confused

i was referred for an evoked potential on my leg back in july. on the 19th january (yeah, i know. long time to wait!!). They found evidence of nerve damage and repair!!

My leg is not collapsing all the time anymore and only when i’m really tired or run down, but the rippling muscle in my thigh has never gone away or improved. my left calf is the same, kinda feels like a pre-cramp. not sore, but tight. my right calf has started to do this now. still have the twitching left eye and my hands are continuing to weaken. they feel swollen, but they’re not. they’re actually worse than they were last year.

now i’m confused. the neuro said he didn’t think anything would show on the evoked potential, but referred me anyway to set my mind at ease. now something has shown up, i’ll be referred back to him. i had a brain mri, which was clear. i don’t know if that included my neck. the doctor who performed the EP said the symptoms in my leg would be caused by nerve damage in my back and is normally caused by trauma (which i haven’t had and all these symptoms came on at the same time).

so, now i’m hoping for a full mri to include the spine.

i’m confused as the whole reason why i was diagnosed with FND was because there was no evidence of nerve damage on brain mri.

i’m still on b12 injections and have managed to get my gp to give them every 6 weeks, instead of every three months. hopefully this will help with my fatigue.

anyway, hope you’re all well.

ha. just realised it wasn’t an evoked potential, it was a nerve conduction test and an emg!!

Hmm…I thought evoked potentials were nerve conduction tests? Sorry you’re back in limboland, Kisywisy but people such as yourself continue to suggest that FND may not be a condition in itself, just a point at which biology baffles science. I keep wondering how long I’ll stay with this diagnosis…just have to get on with things. (I’m finding it hard to stay away from this forum!)