My next stop on the MG route was at a consultant neurologist
specialized in muscle. This happened almost two months after I started the
treatment with Mestinon. Apparently the guy had a ‘special interest’ in MG
which gave me hopes to find out some more information about my illness from a
more credible source than the Internet. Once again I haven’t been seen by the
neurologist himself but his assistant was really cooperative and answered all
the questions I’ve carefully prepared prior to my appointment. However I can’t
say that I was overly happy with the answers as many of them were quite vague.
To me that reinforced my worries that the doctors I’ve consulted so far might
have a ‘special interest’ in this medical condition but none of them seemed to be
specialized in MG. Maybe this explains why I’ve been passed from one
neurologist to another every time I’ve been booked in (not to mention the
ophthalmologists in between). I dared question their expertise in treating
people with MG and kindly asked if I could be seen by someone with more
experience in dealing with this illness.
As the treatment I’ve been prescribed did not seem to work
for me so far, during the same appointment they decided to double the dose of
Mestinon. That means that I am now taking 3 x 60mg per day compared to the
previous dosage (3 x 30mg). I’ve been recommended to start with a full dose
only in the morning (and keep half the dose in the afternoon and evening). I
have tried this approach without any significant improvement after one week. As
there were no serious side effects involved I decided to go for the full dose
straight away. The good news is that there seem to be more frequent spells of
‘normal’ vision (at least when I look perpendicularly). This happens especially
one hour after I take the medication and lasts for about 3-4 hours when the
beneficial effects of the medication tend to fade away. Despite this
improvement, my vision continues to fluctuate immensely which means that it can
get suddenly blurry and/or double depending on distances and the angles I am
looking at. However, the fact that over the past few days I coped without my
eye patch most of the time made me feel happier and much more confident. I am
aware that it can change anytime but instead getting worried and stressed about
it I just try to enjoy as much as I can the time I am able to do things pretty much
normally.
The doctor who has just seen me told me that he didn't think that Mestinon is going to work and asked me to consider going on steroids (immunosupressants)
or more specifically Prednisone. I anticipated this route and luckily I’ve done
some research around it over the Internet and asked other patients with MG
about this line of treatment on various discussion boards. I was personally put off by the long
list of side-effects especially psychological ones (behavioural changes,
depression, hallucinations, memory problems etc.). I am aware that everyone’s
reaction to medication is different and it is difficult to predict the
side-effects beforehand. An argument with the doctors on this issue would have been certainly out of
question if I didn’t have a choice. The choice apparently is the thymectomy I
was writing about in one of my previous entries. I gave it a thought in the
meantime and a good reading and concluded that I would rather prefer surgery to
steroids. I have the feeling that surgery will happen sooner or later anyway.
Sooner would be better as I am still in a fairly good shape both mentally and
physically (my condition has not generalized yet as the symptoms are limited to my eyes only). In the first stage I was told that my thymus was too small to be
operated and therefore thymectomy was not recommended. I insisted anyway and
asked for more explanations. I was not particularly happy with some vague
descriptions like ‘small thymus’. Is thymus supposed to show on a CT scan at
all?! I’ve read about many cases of people whose scans were normal and after
thymectomy their thymus was huge and inflamed (and sometimes cancerous). The doctor confirmed that most
likely the illness is related to my thymus but still he was reluctant about
going further with surgery (without any solid arguments).
Anyway it looks like I’ve made my point clear enough as
shortly after my appointment the doctor gave me an unexpected call. He said
that considered what we had discussed and would like to further refer me to a
MG specialist in Oxford which happens to be one of the best MG centre in the UK.
Apparently they perform video-assisted thoracoscopic surgery (VATS) -
thymectomy. This procedure requires only very small incisions compared to the
old-fashioned ‘open’ surgery which can leave a huge scar on the chest. I have
the feeling that this is a step further and certainly good news for me.
I haven’t received any confirmation yet of when and where
and with whom the next appointment is going to be. The only letter I’ve
received so far was from the consultant neurologist I’ve just seen. Apparently he has
booked me in in exactly one year’s time! I hope this is going to be only a
follow-up appointment and I will hear from them sooner than that...
