Hello again old friend,
It's been a while eh?
I have been reluctant to post anything over the last few weeks particularly as this blog,
in name at least, is supposed to centre on my MG and I have been holding my breath (not literally of course, that would be silly).
Back in October my neurologist, Richard, explained that my progress on the steroid treatment had been good and that I was ready to enter the next phase of my treatment,
this was to involve a steady decrease of my steroid dose, whilst I began taking a new immunosuppressant drug (also used in chemotherapy).
Richard is, as I have already explained a warm and hugely capable person but,
like most capable people he is under huge pressure of work.
Consequently the prescription for this new drug took some weeks to get to me.
Once I had the prescription and the new drug, I looked with interest at the possible side effects (of which he had warned me).
The possibility of serious side effects, coupled with the frequency of necessary blood tests, gave me pause for thought.
I had begun to suspect that the physical effects that I was experiencing maybe a result of the steroids I was taking rather than the disease and that I might be in a remission.
I then decided on a course of action that may seem foolhardy (if you read this please forgive me Richard).
It struck me that if this disease was for life, I could afford to reduce the steroid dose and see what effect it had, I began to do this over a period of a couple of weeks until about 4 weeks ago when I stopped entirely
and waited......
and waited......
and waited.....
and (thats enough we get the picture thanks Ed.)
Sofa so good (or is that Land of Leather)
Without any trace of a symptom, I regularly forget that I had (have) this disease,
and occasionally, like now, I perform a kind of mental stock take....
Droopy eyelid? No
Weakness in my neck or shoulders? No
Any difficulty in breathing/swallowing? No
I am very strict with this evaluation as it would be easy to overlook something subconsciously
in the hope that I am in remission.
I am aware that there will presumably be some residual steroid in my body and that this may still working, however given that I reduced the dose to zero before stopping I cannot imagine that this could be the case for much longer.
One thing that I have noticed is the steroid mania that gave rise to many machine gun style monologues
has left me.....
I actually miss it but doubt if anyone else does!
The new direct way of approaching issues that this gave me however, is still there and this is a
a relief because I feared this maybe only a temporary chemical advantage.
If I wake up tomorrow with the tell tale droopy eyelid I suppose I have at least enjoyed a brief holiday from it and I shall have to resume where I left off, in the knowledge that if it is a lifetime disease I have only lost a couple of months. The conversation with Richard maybe embarrassing though!
" You did WHAT!"
I thought it might be a good idea to stop the carefully considered treatment programme that you had
me on.
" So you decided this based on WHAT EXACTLY"?
It just felt like I might be better.
Mmmmm put like that......
Faced with the possibility that I am one of the lucky people that go into remission
I shall soon have no excuse left to avoid serious training.
When I consider how fit I was back in June when this hit the fan it really does feel like a mountain
to climb from where I am now, but it will be nice to make a start charting my route to base camp.
What will I discuss on here without MG.......
how about this nasty rash on my scrotum?
HAPPY CHRISTMAS!
