Oxford is probably the Olympus of Myasthenia Gravis in the
UK. It is the place where highly qualified neurologists shed light on this
mysterious disease through their widely published research and vast experience.
I was lucky enough to be referred to a ‘god’ neurologist with extremely good
reviews and qualifications (of course I Googled him prior to my appointment!).
I didn’t know what to expect from this appointment.
Definitely not the presence of a couple of research students who observed the
‘patient’ (myself) as directed by the doctor. They have been introduced to me
but I haven’t been asked whether I was comfortable or not with their participation. And I
wasn’t at all... It was uncomfortable enough to be in a new hospital on my own,
consulted by a doctor I didn’t know etc... Looking back I should have probably
asked them whether at least I had a choice. My privacy was somehow invaded and
I believe that this was the reason I didn’t take enough advantage of this
appointment which is probably the most important so far.
Anyway the doctor and I have had the chance to discuss my symptoms which are
ocular only at this stage (double vision more pronounced peripherally), side effects (mainly twitching) and the
treatment I’ve been taking so far (Mestinon 60mg). The doctor told me that Mestinon does not work very well for people with pure ocular MG.
Apparently there are six muscles that control the movement of the eye. Even if
Mestinon works 90% and one of the muscles is not targeted for some reason then
the double vision will persist. Therefore steroids are more effective in managing
ocular symptoms although the side effects are far more numerous and severe.
Take for example Prednisone which is a highly popular drug for MG.
Having previously done some reading about steroids and their
impact on health on a long run, I have decided to give them a miss and consider
other options - which are quite limited at this stage. Normally the treatment
route would be surgery i.e. thymectomy. This is actually the reason I have landed
in this well-equipped centre for MG. They perform VATS (which stands for
Video-Assisted Thoracic Surgery) which I was explained that takes longer to
perform compared to a conventional 'open chest' surgery but the recovery from VATS is much faster. This
is because the VATS requires only three small incisions which are minimally
invasive. Basically I would need to stay in hospital 48 hours and go back to
normal activities in about a couple of weeks. In terms of risks I’ve been told
that I might have the surgery done and no improvement afterwards. The chances
are that 1 in 4 people are not completely cured or improve at all. However,
there seem to be research that shows that thymectomy preformed before the MG
‘explodes’ to other groups of muscles would decrease considerably the chances of generalization.
My goal for
the next couple of weeks is to read some more about thymectomy in Ocular MG as
I really want to make an informed decision about the next step. Part of the
information would be provided by the results for the blood test (Acetylcholine receptor antibodies) which was repeated and the EMG (Electromyography). I
was administered EMG for the first time this month. EMG basically measures muscles’
activity in response to a nerve’s stimulation in order to detect neuromuscular
abnormalities. During the test small needles (electrodes) have been inserted
through my arm’s skin into the muscle. It was painful at times but not
unbearable. I had a chat with the neurologist and found out that the test is
very accurate and shows whether MG is generalized or not. Looking forward to the
results now!
To conclude, I am in a position to decide whether 1) I
continue with the treatment (Mestinon 60mg) I started six months ago, 2) switch to steroids or
3) undertake thymectomy. In case I would decide for the latter, I’ll be further referred to a
surgeon who is going to give me more details about the procedure. Their door is
open now and all I have to do is to book in. Apparently the waiting list is
not too long (which is surprising thinking how long I usually wait for NHS
appointments) so I can have this done in weeks. Considering that there is a
chance to stop the MG from generalizing to other groups of muscles I would
very much like to do it. However I need more time to get some extra information
and prepare myself psychologically for this step.
One more thing I would like to add... The doctor I’ve just
seen in Oxford is probably the first one to ask me how my condition affected
my life. I was pleasantly surprised to be given the opportunity to talk about
this but my enthusiasm was short as the doctor didn’t really seem to listen to
what I said. He interrupted me repeatedly in the middle of a sentence and
changed the subject quite a few times. What can be worse than that?! Well, probably
not to be asked at all I presume. Which happened during my last appointment
with a neuro-ophthalmologist a couple of days ago. He happens to be the most
qualified doctor in double vision in my area but I personally haven’t been
impressed first of all by his skills in relating to a patient. At least I was promised
that my prisms will be soon incorporated in lens (more aesthetic and more expensive
at the same time)! And also I had my Mestinon prescription renewed... However
at this stage I am unsure whether improvements in my vision are due to the
dosage which was increased a couple of months ago. And when I say that I’m
thinking about days when my vision is normal (only when I’m looking
perpendicularly) in intervals of time when presumably the effect of the
medication has faded away. I’m not taking the third daily dose anymore in the evening (I have discussed
this with the neurologist) and honestly I can’t see any difference at all. I
haven’t considered going completely off medication though...
