I hope you are all well.
I need a bit of advice. I was recently diagnosed with MS (O-bands neg) in January and I have had some symptoms since then. I have had a MRI with GAD on my brain and spine completed and there are not active lesions since my last MRI in November. Which is obviously great news, but now the neurologist wants to retract the MS diagnosis completely and he is now suggesting Functional Psychological Driven symptoms instead - even though the MRI showed a change in lesions in November since my last CNS inflammation in 2009/10.
After my last appointment two weeks ago, where he suggested that all my symptoms were organic in nature and probably due to MS, he seems to have done a 360 degree turn and stated that my symptoms since January are all psychologically driven and they are looking at the scans again to rule whether this is definite MS or not.
I feel angry, upset, frustrated and other such emotions. It is not that I want MS - I have been actively been in denial, whilst medical professionals keep telling me to accept my limitations and listen to my body - it was that we thought we had a solution to the medical symptoms that I have been having and after my previous appointment, we thought we were on the road to some treatment that may/may not alleviate those symptoms and allow me to move on.
They are looking at the scans once more and I have yet another appointment next week to discuss further.
I am at a loss.
Blimey, what a turn around, and what a sod of a thing. Just as you’re getting your head around MS, the bloody neurologist pulls the rug out from under you and says, whoops, maybe not.
He may be suggesting Functional Neurological Disorder, which is often considered to have a psychological element to it. But have a look at What Is FND - FND Hope International It seems utterly clear to me that FND is not a psychological disorder, it is real and with real physical symptoms.
But then, you had lesions on your MRI, so I’m unclear as to how one minute it’s MS or CIS at the least, and the next it’s not.
At least you have another appointment to discuss.
Good luck with it.
Thanks Sue for your lovely reply.
Yes, apparently my record in November states I have two patchy lesions from a previous episode and I quote “several tiny lesions” in the subcortical area. So I have no idea how to react except to sulk at the neurologist for 30 mins and I am not great now. I have lesions on my brain, none on the spine and “clinically” diagnosed, yet they are now backtracking and looking at everything again.
Sorry this post is a bit down, just don’t know what to do.
Update: Thank you to all of you whom have supported me over the last few months. I am still struggling with my health, although managing to pace and sleep when needed (not such an easy task with 2 little ones mind!) Our last visit to the neurologist was pretty shocking, in fact. After reviewing my scans once more they have now come to the conclusion that there was no progression in lesions and my diagnosis is in fact a possible misdiagnosis. However, I still have lesions on my brain (they have not gone) and evidence of demylination on my left optic nerve. We are now being referred to another neurologist who specialises in white matter lesions and I am being tested for Myasthenia Gravis to see if we can get to the bottom of everything that has gone on over the last 6/7 months. Any ideas? Again, thank you to all who have made this confusing episode in my life a little easier to bear! With best wishes, S