For a long time I have been pondering about changing the name of my blog. The Myasthenia Kid name seemed to have become pointless, I wasn’t having as much ptosis as I was in the early days and it had been many years since I had been brave enough to raise the subject of Myasthenia Gravis with my doctors. I had become used to the silent eye rolls that happened if the subject strayed anywhere near MG in a doctor’s presence. Basically I had been belittled or shamed into silence and as my symptoms weren’t bothering me so why rock the boat, when it had taken me so bloody long to be taken seriously?
I saw my own gp earlier on in the month as I needed to get my blood and x-ray results, I had full-blown ptosis then. I raised the fact that no one knew why I had this and explained it tended to happen when I was sicker than normal. She basically shrugged her shoulders and left it there. When you are faced with that kind of attitude when you bring up a distressing symptom it is soul-destroying. You can understand now why over the past 8/9 years I have chosen not to.
On Thursday last week I saw my PoTs consultant, hubby and I had been taking bets on if my ptosis would turn up at all before we left for the hospital. Anyone with fluctuating symptoms knows that rarely do they show up on a day that you need them to. Within an hour of getting up early on Thursday morning I knew it wasn’t a case of if but when. I felt absolutely dreadful, my heart was doing its slow beats, followed by rapid palpitation inducing beats. My head felt like it was swimming, my body just felt like it didn’t have the strength I needed to be able to get washed, dressed and out of the door. If I could have lain on my bed all day and just sobbed I would have preferred that to having to pretend I was well enough to get to my appointment. I couldn’t miss this one as it was my second official appointment with my hospital appointment. The first one being back in 2015 (which isn’t last year), I hadn’t been able to see him officially in 2016 at all due to developing a CSF Leak, although I had seen him unofficially as he always popped in when I was having my caffeine infusions.
I was really nervous about the appointment, it had been a long hard road to get to see him and I have never raised the subject of MG. I had never needed too and he had never seen me with full-blown ptosis. I was concerned that raising the issue now may impact on our patient / doctor relationship. It was a big risk, one I hadn’t taken in many years but what choice did I have when I hadn’t only been suffering from ptosis but breathing, swallowing and chewing issues.I have also had problems with being able to walk, where although I know my brain is telling my legs to move nothing happens. Everything except the breathing issues had always been written off as EDS before, once I got that diagnosis in 2011. There are reports of people with EDS who have ptosis but none of the photos I have seen accompanying the medical literature look like mine. They have the droopy eyelids, but they don’t have the eyebrow drop, side of the mouth drop or the pupil drift that I do.
I think it is pretty safe to say my consultant was pretty shocked when I took off my sunglasses when we got into his consulting room. I am extremely self-conscious about the way I look when I have ptosis. This stems back to when I had two people openly take the piss out of me when I sat in the doctor's surgery many years ago and the crap I took off some people when I was at work, they thought they were hysterically funny to shout “eye, eye” etc whenever I was in the vicinity. When it is bad I tend to wear oversized sunglasses that hide both my eye and my eyebrow, so I don’t get the stares etc.
I gave my consultant a brief overview of what has been going on, how it’s not just ptosis and that other bits of me are refusing to work. I gave him a very high level summary of my history of ptosis and my treatment at the hands of the local hospital when all tests proved negative.However he like me agrees with the fact that the first Tensilon test was positive because my eye opened, unlike their view that whilst it opened it didn’t remain open long enough. He like me also felt I shouldn’t have had the second Tensilon test when my blood pressure was in the toilet (80/50) and I had a pulse of 54. I had already come close to passing out whilst waiting to be checked in.The Atropine I was given as part of the test made my heart rate soar to 140 bpm and yes my eye opened with the Atropine and not the Tensilon, which was given last. I was so unwell the day of that test I should have just been observed and given IV fluids.
Knowing that the “only” test (if you ignore the first Tensilon test) I have been positive on was the ice pack test, I had come prepared with a freezer block in a cool bag. I made my consultant touch it, so he could feel that it was cold and then with it wrapped in some kitchen towel I proceeded to apply it to my eye. As I was doing this we continued to chat, I then removed the block and showed him that the ptosis had resolved. He looked at me and said “That’s a positive indicator for MG”. I was quite impressed that he knew this. None of the non MG familiar doctors I have shown this to have been aware of this. I told him “ I know that, you know that, they know that but according to XXXXX hospital I don’t have MG” I explained to him that I had spoken to a woman who has designed the blood tests for MG. A prominent and world-renowned scientist in the field of MG, who told me that this was a sign that there was something wrong with the neuromuscular junction, for the ice pack test to have this effect.
Yet this was dismissed out of hand by two hospitals, one suggested that I was faking the ptosis for attention and my old gp surgery had suggested in a letter to the hospital that I was faking for financial gain. When I requested my medical records I doubt very much my old doctors practice had ever expected that letter to be copied and released to me. The financial gain supposedly was due to the fact I had asked them to fill in some financial documents to claim on my insurance to be able to pay my household bills whilst I was off work. If I had been poverty-stricken and lost my home would I have been more believable?
I had been treated so badly by so many doctors in the past, this had been a massive gamble and I explained this to my consultant. I believed my MG symptoms had been kept in check / been stable because I severely restricted what I did physically. I had been started to feel better than I had in years this April and had stepped up what I was doing as a result. Now this had all come crashing down around me, the MG like symptoms were back and it didn’t matter how much rest I had they weren’t going away. My consultant was very honest with me and told me “unofficially I think you have Myasthenia Gravis but I am not a neurologist and can’t give you that diagnosis” he then added “if you don’t have MG you have another neuromuscular condition and I am going to refer you to a movement disorder specialist.”
Any normal person would have been walking on air with this validation but I am afraid, I have been there, seen that and got the t-shirt. I am not hopeful of getting a diagnosis, hope leads to disappointment. As I said last week all I want is to know the reason why my body behaves the way that it does and if there is anything we can do about it. The slight glimmer of hope I have is that since 2009 doctors seem to be more open to the fact that there are some patients who are not positive for the Achr blood test. It seems to be more accepted now than when I was going through this the first time around. However I was always negative on the SFEMG’s which is considered the gold standard test. But this test relies on the competence of the person performing them, something which doesn’t seem to be considered very often.
I know that the waiting lists are long, especially for neurology and like last year, I may be refused on the first request. My consultant did tell me that he was asking for me to be seen asap but it could still be a wait. I replied without thinking “I know, it’s not life and death stuff” but he brought me back to earth with a bump and said “ well actually it could be if you go into an MG crisis”. To be honest currently that is what scares me the most, what if this happens and I don’t get the medical care I need because I don’t have the diagnosis? Especially if it happens here, where the care has been awful previously. I can’t fault the A&E staff when I presented with breathing issues in 2008 nor the ambulance staff that put on their blue lights when I was in and out of consciousness. It was the on call neurologist who overruled them all, telling them I was having a panic attack and screamed at me when I couldn’t read the eye chart because of double vision. There have been a few avoidable deaths this year in the worldwide MG community, where the signs of a MG crisis have been ignored and written off as a panic attacks and those have been when people have had a concrete diagnosis.
So I am back to the age-old question MG or not MG, at the moment who knows?
Wonderful new this morning, I have been nominated for a Best in Show Wego Blog Award. Many thanks to whomever nominated me!
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