I may have mentioned before that I liked certainty. Grey is such a nonentity of a colour. Not really a colour at all.
I was feeling on more solid ground regarding my condition. Having spent considerable time scouring the internet for information, I had questions and needed clarity from Dr D.
The very first time I saw him, when he said I most probably had myasthenia, he told my husband and me that it was curable. I couldn’t find anything to corroborate this.
And we needed to hear it from him, my specialist. I needed my husband to understand the truth.
This visit was supposed to be about reviewing my CT scan and TPMT results, and talking about beginning azathioprine, the immunosuppressant that was to be the last phase of meds.
Azathioprine was supposed to kill my immune system. Bring it down. Stop it producing so many of the antibodies that aimed to stop my muscles working.
I had concerns about this, obvious ones. Of course, I’d have no defense against viruses and infections. This process was already underway as the steroids gradually knocked back my immunity. Being a germaphobe, I prepared to step up my antibac obsession and avoid sickly people more vigorously. There were some glaring issues with this plan though.
Firstly, I was no longer able to scour my environment the way I usually would if I was on high alert for germs. I didn’t have the strength to vacuum, scrub and generally kill every speck of bacteria that might be lurking. My home was gradually getting dirtier. Husband told me it really wasn’t that bad. Aware that my cleanliness standards were excessive, I tried not to care much and adjust to having more realistic expectations. I couldn’t project my desire for a ridiculously pristine home onto him. This was one aspect of my diminished eyesight that I was thankful for; I couldn’t actually see the dust and grime very well!
The second and far more ominous side effect of azathioprine, and one I wasn’t ready to dwell on, was the increased risk of developing cancer. Specifically melanoma or lymphoma. I read several accounts of this happening. But stopped looking rather than sought out medical studies and more reliable evidence. I decided that if it was a choice between dying of MG versus the possibility I might develop cancer, then I was going to take the my chances.
It really wasn’t a choice at all.
Now, I was prepared to ask Dr D about whether or not myasthenia was curable.
On one hand, I had no difficulty asserting myself. I’d advocated for other people many times. When I made complaints on my own behalf I nearly always got a positive result.
But on the other hand, this was my specialist. He told me he was the local expert for myasthenia. MG was so rare that many doctors hadn’t heard of it. I feared that if I handled this badly, I may end up with no specialist at all. This was likely to be a remnant of anxiety from previous poor experiences with medics.
My entire appointment was tinged with anxiety, as I prepared to ask Dr D if I truly could be cured. We discussed my CT scan results and he asked me if I’d heard anything from the thoracic surgeon yet. I hadn’t, and pressed for more detail about a timeframe for surgery. I’d understood that it would become more of a priority if my scan showed abnormalities. Dr D told me it depended what the surgeon thought. My condition was still unstable and surgery was too dangerous until my condition was under better control. He asked about my symptoms. I told him about the latest developments. The sporadic weakness in my right hand and mouth muscles. He threw me a curve ball…
That might not be your myasthenia. There may be something else going on.
I was confused. These were typical symptoms of myasthenia progressively getting worse, according to my research. So I asked what he meant, what else could it be?
Any number of things. You’re on medication now and these could be side effects, so it might not be the myasthenia. We need to adjust the dosages some more. The mestinon seems about right. Let’s increase the steroids a bit more.
I was completely thrown. Dr D was telling me something that I hadn’t expected; the notion that the recent developments could be related to the medications hadn’t occured to me. So with no facts on the tip of my tongue, I had no response. I’d have to go away, research again, ask the other myasthenics in social media groups I was now part of, and discuss it further at my next appointment.
Finally I got to the bit I’d been dreading.
Doctor, I would like some clarification on something you said the first time I saw you.
You told me myasthenia is curable. Everything I’ve read and been told by other people with MG says it’s not. That at best, it might go into remission.
Dr D spoke about becoming ‘symptom free’ and ‘indefinite remission’. He said it was quite possible for it to be under control within six months. That I could easily be able to live a normal life.
So, not curable then?
I was a person who liked a straightforward answer. The response seemef to pivot on the definition of ‘curable’.
But he didn’t reiterate that MG was curable. I was relieved because the whole conversation at the beginning of my encounter with this damned disease had created some issues. My husband absolutely believing I was going to get better soon. And insisting to me that my doctor knew best, and therefore everything I told him that contradicted must be wrong. I hoped now he’d listen and stop thinking I was just being incredibly negative about my condition.
We got in the car to drive home.
Well that’s good news, you’ll be better soon!
I sometimes wondered if he’d been part of the same conversation as me.
This was going to be interesting. Again.