Another year is just a few hours away from becoming a
memory. Looking back I can say that it was an important year for my myasthenia.
I had my thymectomy in January and my condition has been stable throughout the
whole year (I don’t think I’ve ever been so grateful for my good health!). My
eye patches and prisms glasses are gathering dust and coming across them every
now and then I just can’t believe that I was wearing them not so long ago. I
had my second diagnosis ‘anniversary’ in November and am feeling more positive
that the symptoms will stay ocular. Will I be one of the 10-15% of patients
whose disease remains exclusively ocular for the rest of life? That is what I was hoping for a couple of years ago! The risk of
generalization is highest in the first year after onset. Approximately 85% of
patients have generalized disease within that time frame. Reading through
medical studies I have found out that the risk of generalization is
significantly reduced after two years. This gives me big hopes that my ocular
myasthenia will not progress into anything nastier from now on.
I continue to take Mestinon (Pyridostigmine) which is the only medication I
have been taking since onset. I don’t know if it makes any difference at this stage and the
doctors cannot say what the consequences would be if I decide to discontinue the
treatment. So far I have managed to reduce it from 180mg just after the surgery
to 30mg daily. I have not been bothered by any muscular twitches since which was
definitely a side-effect of the medication. However I am reluctant to go off
medication completely due to the fears that if something goes wrong I will
blame myself for not keeping things under control. Who knows, maybe the
medication is one factor that has contributed to the stabilization of my
disease. I am sure that the thymectomy has also played a major role. The proof
is that my anti–acetylcholine receptor (AChR) antibody test has recently shown
a drop from 25 (levels at onset) to 13 (while normal levels are below 5!). This has been reflected by the absence of double vision episodes which have been quite severe
during my first year with MG.
In terms of treatment, I still see my neurologist every six
months for routine checks but I have just been discharged from the Orthoptics
department as they consider that my vision has been normal for the past six
months. As the appointment was just yesterday it gave me a good feeling towards
the end of the year which I wanted to share with you now during the festive
season (yet another reason to celebrate!).
I wish you all a happy New Year with best health and
positive thinking!
