Wow!!!! It’s been ages since I posted at all In Sickness and in Health blog. It has been a year and about three months to be more precise. Guess what everyone; my new Neurologists have come up with a new diagnosis for me.
In September 2015, I returned to my country of origin; Nigeria; where I did my best to get in touch with the best Neurologists in the country (Highly recommended and not cheap at all). They contacted my Neurologist in Ghana, run lots of tests all over again and came to the conclusion that I don’t have Stiff Persons Syndrome but rather Functional Movement Disorder.
This was a very surreal experience for me. I had gone from Multiple Sclerosis diagnosis to Stiff Persons Syndrome and Myasthenia Gravis and lets’ not forget the Lacunar Infarctions the MRI scans showed. The major question was, what do I believe now?
It has taken me about a year to come to terms with myself and I’m still coming to terms with the new diagnosis. It would be difficult to write down this ‘interesting’ journey all in one post. But I will be trying my best to put down my thoughts and prayers in to words and hopefully get some helpful comments from my readers out there.
I think I should briefly explain Functional Movement Disorder (FMD). According to the Canadian Movement Disorder Group, Functional Movement Disorder is a term to characterize real and problematic disorders of movement that, although not faked or imagined, are not due to an underlying neurological disease. These are conditions that are not infrequently seen in specialty movement disorder clinics (up to 15% of new consultations), wherein a patient comes in with a disorder of movement or abnormal movements which interfere with their function, but careful examination is able to exclude that the movement disorder is due to damage in the nervous system. Although the cause or trigger for the dysfunction is often never found, these disorders are not due to any brain pathology or lesion. These patients can present with a wide spectrum of different movement disorders that range in their severity and impact. An analogy which is useful in helping both doctors and patients understand these puzzling conditions is that they represent a software problem and that the hardware is intact. www.cmdg.org
This last one year has been emotionally difficult for me because it just feels like; the rug has been pulled out from under me. I remember My Sister asked, the Neurologist last year; “Does that mean she isn’t sick?” and the Neuro answered, “She is”. My family had and still have no idea on how to cope with the ‘new’ me. Coping with Stiff Persons Syndrome was one thing; at least they could explain it and in some ways understand it. With Functional Movement Disorder, no one really understands it. I feel completely lost.
I spoke to a dear friend, who advised I research on it and start learning to leave with it. So that’s what I’ve decided to do. It might have taken me more than a year to talk about it but I am now. I need to get better. I need to believe I can get better or at least be a better version of this “new” me. In subsequent posts I would explain what living with this illness has been all about and how I’m coping with the good and the bad and hopefully, not the ugly.
The plus side to this diagnosis is the possibility of a full recovery. I guess I could be hopeful…