Hi,
My son was diagnosed with MS about 6 years ago when only 12. He had his first episode at about 7 which was initially diagnosed as ADEM. He has been on Rebif for the past 6 years and thankfully has not had any relapses.
However, we have been called back by the neurologist following a recent routine check-up. They are not saying much in advance of the appointment which is not for another 3 weeks but they have mentioned that he has shown up positive for MOG antibodies.
A bit of googling (dangerous I know) suggests that this is developing area of focus and they are now starting to re-classify some MS diagnoses as MOG-EM. I am now on tenterhooks wondering if we are going to get a change in diagnosis and, more particularly, if this is good news!!!
MOG-EM seems be a de-myelinating disease which is similar to MS, often with a similar pattern of relapsing/remitting episodes but, I think, the prognosis is generally better than MS, though this is difficult to discern for the literature available. The information on treatment is also a bit unclear.
Has anybody any experience of this? What are the treatments? What is the prognosis?
Thanks
Amazing news. Met with the Neurologist this morning and they have confirmed that my son does not have MS after all!!!.
He is still not completely in the clear as he does have a condition they are calling MOG-EM (though there really is not a settled name for it yet). However, the doctor felt that the fact that my son had been stable with no relapses for 6 years was very encouraging and thought that there was a real chance that he might not suffer any further relapses! They are not prescribing any ongoing medication at this stage and my son is over the moon that he will no longer have to endure the 3x a week injections (Rebif)! This feels like a true miracle and we are absolutely delighted that our son is no longer facing the uncertainty that MS brings with it.
The reclassification came about on foot of a new test of the MOG antibody - it has only been available in Ireland for about 2 years and there are only about 30-50 cases identified in Ireland to date. The doctor said that the condition mimics MS systems - often with Optic Neuritis as a symptom. The research on it is still in its infancy but she expects that more people will be reclassified as the knowledge increases.
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Stunning news. I’m really happy for you and your son. I do hope this means he will have a stable healthy future.
What a wonderful gift. Let there be continued research into MOG (with all its various letters and labels).
Sue