Morning all,
Sorry this is long but hope it might be helpful for some of you. So saw the neuro last night.
He confirmed that from the physical examination he doesn’t suspect MS, just as I expected really.
However, he has booked me in for more blood tests and another full spine and brain MRI. He said maybe a lumbar puncture would be a good idea as a precaution, but we decided between us to wait and see if the MRI/bloods are suggestive of anything that may need a LP.
Then he went on to talk about what he thinks this actually is…and yes…FND.
However… he explained really well what FND is, how devastating it can be and how it is a recognised “real” condition that needs proper investigation and treatment. The way he explained it was really helpful, as of course the first thing I did was argue about not being stressed. He said think of it like a computer software problem, you can take the hard drive apart and examine it carefully but you won’t be able to see whats wrong, the software is functioning properly and making your computer crash or go slow and its caused by possible a number of things and only by finding those causes and fixing them will your computer start to function properly again.
He was very reassuring in that he does not for one second think i am making this up or imagining the symptoms, he said the pain, the sensations, the dizzyness are all there, they are real, its just that FND causes the nervous system not to work properly because of something going wrong in the brain. The most likely cauase for me is the spinal surgeries I had, the 2nd one being pretty major, and the fact that I never recovered properly and live with chronic back pain and some disability because of it. However there may be also be other things from my past that I have just blocked out and thought I had dealt with that my brian is simply not coping with.
He gave me the name of website, neurosymptoms.org.uk which I looked at last night and things made a lot of sense. Any one who has suspected FND or gets dismissed with stress, I recommend you look at this site, it’s really insightful.
So for the moment he has taken me off Pregabalin and instead upped my Amiltryptaline and I will need to increase the dose weekly for a period of time. In the meantime I will have the MRI etc and if tests come back clear he will then set me on the path to treatment for FND which is a mixture Physcotherapy, further neuro support and appointments and more neuro physio.
I was very upset at first, I think of myself as a very in control person and its very scary that I have no control over what my brain is doing to my body, and also I’m scared of the stigma associated with this, people thinking i’m mad, malingering etc. But having slept on it, if it is FND I will go for every test and treatment they recommend as it is curable or at least made much more manageable, and i’m so sick of this thing I say bring it on, lets get it sorted.
So upshot is, MS unlikely, FND a strong possibility.
Feeling a bit more positive today, at least we are now properly on the way to getting help
Hope you all doing ok this morning.
Bunny xxxxx