I chased up my Visual Evoked Potentials results today and the neuro secretary informed me that they’d sent a letter, then kindly offered to read it to me down the phone.
The head neuro says that the test was clear and that my symptoms are functional in nature (or words to that effect.)
So, after two neuro examinations, clear blood tests and clear VEP, I have come out with a diagnosis of Functional Neurological Disorder.
I have mixed feelings. My strong intuition about MS has been effectively disproved. Can I trust my intuition at all? It is something very important to me. I’m glad of course that there are no signs of damaged myelin but I am still dealing with cog-fog, poor memory, vision changes, numbness, tingling, involuntary movements, bladder and bowel issues, sharp brief pains, walking difficulties and fatigue.
The only medication I’ve been offered is duloxetine and I haven’t been very reassured by what I’ve heard about it. I was very glad to be able to do the CFS/ME group therapy and have been given ways to improve things, bit by bit…but it may take quite some time with no guarantees of a full recovery.
So, rather sadly, I feel that I need to step away from this board gradually. I’ll read replies but won’t start new threads (poke me if I do). You’ve all given me such wonderful support and advice over this past two years, so thankyou, from the depths of my heart
oh reiki blossom I’ve been following your progress very similar to mine and don’t know what outcome I’ll get either, we have both been waiting such a long time and it’s an emotional roller coaster. Pigpen Carole always love reading your advice especially when I’m wide awake at 2 in the morning !! Good health And happiness Reiki Blossom x
Thankyou, both. I have plenty of support, my CFS/ME group bonded so well that most of us meet up for tea and a chat every few weeks and folk on the www.FNDhope.org private forum on Facebook, one of whom I have met and become friends with. Official support-wise though, FND is like the poor cousin of MS. People struggle to get equipment, may have a harder time claiming benefits and it is so frustrating to be told that your nervous system isn’t working properly but with no explanation, or reasons borrowed from other areas such as CFS/ME. CheshireBlonde - I’m PMing you x
Hello Reiki, I just had to reply, i feel for you, i’m in a similar situation, significantly disabled but with no real answers…these are my thoughts, Does it matter what they call it ? i have agonised over this feeling… that i must have some control over it and maybe iv’e caused it ect … perhaps if i really really try i might just get better?? but at the end of the day it is what it is…no amount of stressing will bring back my mobility…So for now iv’e taken the control back i’m no longer chasing for the answers, although i do believe that time reveals all… who knows. maybe we will find out one day. but for now we have to live with this and try to be positive.
Iv’e read many of your messages before i even joined the forum and you always strike me as a very positive person in fact i would like to thank you because your messages always helped me and made me feel as if i was allowed to ask for the support even though some days i felt like a fraud.
On that note please don’t leave the forum because you are a big support here to so many of us.
I saw your post and wanted to post something similar on the forum as well. I’ve been posting over the last few months with similar problems to you, I had head mri, neck mri all came back clear and a spinal tap. I got the result of the latter in January - they told me by letter there were O bands in the fluid but as my mri were clear the neurologist discounted MS. No follow-up, nothing. I’ve seen three GPs who still cannot tell me why I’m still tired beyond belief, foggy brained, eyes going wobbly, legs stiff, arms aching… list goes on. Now my GP is telling me I have ‘functional neurological disorder’ or ‘perhaps fibryomyalgia’, gave me stronger painkillers (despite my saying they do nothing) and sent me away. Apparently there is no point in my going back to the neurologist. Sorry for the long comment. I feel very frustrated and wanted to post before but I feel as they’ve ruled out MS, I feel stupid posting on an MS forum.
I want to say thanks everyone for all the advice as well. Take care all.
Thankyou, Michelle,your reply was really touching. I’m sure I won’t be able to stay completely away but need to back off for a bit. I’m going to volunteer for some FND research, if I am what they are looking for. You’re right, this is what it is and I’m doing my best to live in each moment and being gentle on myself. Thankyou for your support. X
Thanks, Blossom. My intuition is still shouting “It’s MS! Why can nobody see?!” But the medical professionals are all saying “Functional problem…pristine brain…clear test”. I’m just going to sit quietly between tbe two, for now, doing Mindfulness. Just being. Every time I start searching again I will bring myself back to just being with it and staying positive as best I can.
I can’t stay away Yesterday I spent the day at Addenbrooke’s Hospital in Cambridge, helping with a study that included FND patients. Part of the study was to do tests by choosing and pressing buttons whilst having an fMRI scan. They did a regular MRI scan to begin with, so at the end I mentioned to the radiologist that when I’d had my first MRI, it was before my involuntary movements had begun and I was curious about the new scan. Although she was clear that the scan was for research purposes only and wouldn’t routinely go to my GP, she did mention that they had noticed “a couple of structural things” and that I could ask my GP to request a copy.
This is something of a relief! After the second neuro showing me the old scan of my ‘perfect’ brain (which was taken before new symptoms cropped up), now I’ve had a radiologist tell me that there was something to be seen. I plan to talk to my GP and see what he thinks.
Blossom, you’re right. My intuition is telling me to keep searching and to have faith in myself. I will keep searching, but now I’m a bit more laid back about it. Like someone said to me, if it is MS, it will show up eventually. In the meantime, I’m going to deal with my symptoms as best I can and get on with enjoying my life.
Yesterday I spent the day at Addenbrooke’s Hospital in Cambridge, helping with a study that included FND patients. Part of the study was to do tests by choosing and pressing buttons whilst having an fMRI scan. They did a regular MRI scan to begin with, so at the end I mentioned to the radiologist that when I’d had my first MRI, it was before my involuntary movements had begun and I was curious about the new scan. Although she was clear that the scan was for research purposes only and wouldn’t routinely go to my GP, she did mention that they had noticed “a couple of structural things” and that I could ask my GP to request a copy.