This week has been fraught with activity, on the day last week’s blog post was published I had a telephone call offering me an appointment this Friday for nerve conduction studies and to see the neurologist who specialises in movement disorders. Stressful doesn’t seem to cover it. Even though I have been through all of this before, on numerous occasions it never gets any easier.
This isn’t my first rodeo where MG (myasthenia gravis) is concerned. I have had at least 4 nerve conduction studies previously, all came back negative. I will be honest, I really don’t hold out any hope for this one being any different. I have seen several neurologists who on first sight are utterly convinced that I have Myasthenia Gravis but when the tests all come back negative, shrug their shoulders and look no further. I have demonstrated my positive reaction to the ice pack test on more occasions than I have fingers. Yet with all the other tests coming back negative it is ignored despite the fact it conclusively shows I have an issue at the neuromuscular junction.
The fact that I respond to mestinon (pyridostigmine bromide) is also ignored once the tests come back negative. With one doctor suggesting it was merely the placebo effect. It is difficult to feel positive about hospital appointments when you know that you will be ignored if the tests don’t come back with a positive result. There is also the danger that you will be labeled with a having a psychological illness such as somatization disorder and all the medical care you currently have will disappear. The stakes are high, I know how much I stand to lose.
I have spent the last week slowly working through my pre-hospital appointment checklist. As I am seeing two different departments on Friday, I need to have two sets of prescription medication lists and the medication allergy list (as there are quite a few that will provoke a nasty reaction). These both needed updated as some of the medication I take is not on my repeat prescription list, some of it on the repeats list I haven’t taken for over a year and I have developed more allergies since last year. At the same time I have put together an Emergency envelope that will sit by the front door. This contains my latest hospital letters (copies of), lists of medication allergies, prescribed medication list and contact numbers for next of kin. I think if you have a chronic illness that may require an emergency hospital admission it is good to have an envelope or file with your relevant medical information in. In an emergency blind panic can set in and you can forget stuff. This way all that I have to do or hubby has to do is handover an envelope and the paramedics have everything pertinent to hand. Plus as my health care is overseen by two different hospitals in two different areas, the electronic notes don’t link up.
I tend to also carry a copy of the list my prescription medications and medication allergies in my purse, along with a short list of my medical conditions when I leave the house. So that should anything happen car accident, faint etc I have all the information to hand. I know it sounds over prepared but I am horribly allergic to CT contrast dye, I really wouldn’t want to be injected with the stuff unless it was absolutely necessary.
I have lost count of the number of times I have read and re-read the appointment letters from the hospital, my memory is shocking, I wanted to ensure that I have all the correct information with me and that I know where I am supposed to be going. Also with the nerve conduction studies they have asked that I don’t use body lotion etc before the tests as it can interfere with them.
I would normally wear make up for a hospital appointment, so that they can’t toss me into the “depressed” file, I also try to avoid wearing black again to avoid being written off as depressed. Yes they really do use what colour clothes you are wearing and if you are wearing makeup to suggest that you are depressed (if you are a woman). I always ensure if I am wearing black (even if it's just a top or a pair of trousers) I have bright colours somewhere on my outfit. So a great deal of thought has had to go into my hospital outfit, as the neurophysiology appointment asks that you wear a top that can be rolled up above the elbows and with trousers that they can be rolled up above the knee. I need to also add in something that is comfortable and preferably with layers, I have so many problems regulating my temperature, where I can go from cold to way too hot in a matter of seconds, so layers for me are essential.
Then comes personal grooming, something that can fall by the wayside when you feel like shit! I think the last time my legs saw a razor was the end of June, for my last hospital appointment. I am lucky I am not very hairy and it is slow-growing so I can get away with it for the most part. However despite being sick I am incredibly vain and would die of embarrassment should I need to roll up my trouser leg for the nerve conduction studies only to reveal really hairy legs!
I have also included two photographs in my hospital paperwork of my ptosis should sods law strike and I don’t get it that day. It is usually the case when you have a fluctuating condition that it is never at it’s worst when you see the hospital consultant. Over the years I have learnt the hard way, so now I take evidence with me. So if I am complaining of lower than normal blood pressure I take my omron BP monitor with me as it stores the readings. Now with ptosis I take good clear photographs that I have downloaded from my phone. That way it can’t be disputed that it happens. It does pay to be organised as if you are like me, you can get a little flustered when seeing a new doctor. Knowing that I have prepared in advance helps keep me slightly calmer.
I’m still debating on whether or not to take a freezer block with me, in case I should need to demonstrate the ice pack test for the neurologist. I have a nice small cool bag in which to keep it cold, it’s just a case of whether I should or not. In the neurologists letter they have advised me not to take pyridostigmine bromide before the nerve conduction studies but to take it when I have finished the tests. Again I am wondering if I should wait until I am actually in front of the neurologist to take it, so that they can see the extent of my ptosis and muscle weakness. At the moment I think I shall take the meds with me but not take them until after both appointments. What's the point in assessing my muscle weakness if I have taken a medication that will improve my muscle strength?
You can probably tell I am a little wound up about this up and coming appointment. It is already affecting my sleep, as I am waking up at all hours and the immediate thing on my mind is this appointment. So much hangs in the balance. I am honestly not bothered if its MG or not, I just want to know why I am having ptosis / muscle weakness and what can be done about it. Over the last ten years all I have wanted are answers, which I don’t think is too much to ask?