More Mestinon...

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...