You heard it here first folks I’m bloody cured!!

It’s not often I am stunned into silence but yesterday I pretty much was. Unluckily for you, I seem to have found my voice again. So get comfy, get a hot beverage of your choosing and settle in for a bumpy ride. My long-awaited neurology appointment happened and it turned out the way I had dreaded and worse, if that is even possible. I had been stupid and allowed my hopes to rise only for them to be dashed yet again. I am angry, I am hurt but I am trying to be rational and logical in accepting that I haven’t had an MG diagnosis for the last ten years and now is no different.

 

I had really hoped that this new neurologist would approach me with an open mind. That all the medical crap that had followed me around in my notes for years wouldn’t be dredged up during this appointment but looking back now with 24 hours to calm down, I can see the decision that I didn’t have MG had been made long before I entered the consulting room.

 

Yesterday was a long, painful and emotional roller coaster of a day. There is so much to say but so little of it of any real use. The nerve conduction study was painful. The doctor that conducted it tested my hand, wrist, arm, neck and face. I am in a lot of pain from the tests done on my neck. I really wouldn’t have thought that they would have conducted such a test on someone who has only just recovered from a spontaneous CSF leak. Last night with my head throbbing I feared that the leak has started up again. I can only hope that it’s not the case.

 

The nerve conduction study checks to see if the nerves are carrying messages to the muscles. My test was done using an implement that looked about the size and shape of an old-fashioned electric razor. On the very end of it, it had two prongs, it felt very much like I imagine being poked by a cattle prod would. When the doctor was testing my hand it was jumping around so violently he actually had to hold my hand still. I knew as the test was being done by the way my muscles were twitching that yet again this test would be negative. When he tested the side of my neck, my head jerked uncontrollably from side to side, I also had a searing pain up the side of my face. My neck is very unstable due to EDS and this hasn’t helped one bit. I guess I will only know if any damage has been done over the coming days and weeks. I am hoping the pain I have at the base of my skull and in my neck improves. All I know at the moment is that painkillers aren’t touching it.

 

My face was also tested but he used a two small needles to do this. One needle was inserted close to my hairline in line with my eyebrow and the other was inserted midway between my eyebrow and my fringe (bangs for those in the USA). This wasn’t as painful but it was exhausting. Both sites bled quite a bit afterwards and where the needle was inserted at the side of my eye still hurts (24 hours later).

 

The test was all over within 20-30 minutes, although since speaking to people in the know a proper full sfemg looking for MG should take an hour or more. An sfemg / emg is only as good as the person performing it, MG is not common it is considered rare, so the operator also has to have a vast experience of performing this test on those with MG. It is not the gold standard test it is claimed to be and many neurologists around the world are starting to realise this.

 

After these tests I made my way down to the unit that I was meeting the neurologist in. I needed bloods to be done as the neuro wanted the basic MG blood tests carried out again. No doubt in a few weeks time I will learn that they are negative too. My veins were having none of it as usual, the healthcare assistant made three attempts and couldn’t get a drop despite being in a vein on all three occasions. It wasn’t that surprising to me, it was now gone 2pm and I hadn’t drunk anything since about 9.30am as I didn’t want to constantly need the toilet on the drive to the hospital.

 

It was decided that I would go in to see the neuro and someone else would do battle with my veins after. On the face of it the neuro seemed nice, polite etc but it became clear within minutes of the consultation starting that with the nerve conduction tests coming back negative that they wouldn’t be entertaining the idea of MG. There was no neurological exam, in all my years of being a professional sick person, I have never met a neurologist, student or otherwise who hasn’t performed a basic neurological examination. Clearly as a patient I wasn’t worth the effort.

 

Whenever I have seen neurologists in the past they have examined my eyes or the muscles around them. Usually they would get me to do a sustained upwards gaze which would give me ptosis. They would check also for Cogans lid twitch as you can see demonstrated in this video on YouTube https://www.youtube.com/watch?v=X8DNc-q12lY. Again that would have been positive for me. There is a whole host of other tests they could have done but chose not to because being positive on them would have left a bit of a conundrum as I am always positive on these. To not even bother with any sort of neurological examination made me feel worthless. It seems with a negative nerve conduction study the patient is simply wasting the neurologists time and effort.

 

I was told repeatedly with the nerve conduction study coming back normal, I couldn’t possibly have MG. It was suggested at one point I was in the grip of a hemiplegic migraine………..which was dismissed when I pointed out I hadn’t had a migraine in several years. In fact it had been so long since I have had a migraine that I have stopped taking the medication I took daily to prevent them. Obviously now I have said that out loud I am expecting one any day. I haven’t actually had a hemiplegic migraine since the age of 15, when I did have them my face was never involved, I didn’t have ptosis, I was basically paralysed down one side of my body when they happened. Other than that they had no clue what was causing the ptosis and apparently it doesn’t merit any further investigation. They will kindly review me every now and again when I am at the same hospital seeing my PoTs consultant.

 

Around half way through the appointment they let slip that they had been digging through my notes from ten years ago. They were the same ones that suggested somatization disorder as the root cause of all my problems including the ptosis. So now after being brave enough to stick my head above the parapet and mention MG again I have inadvertently put myself in danger of being written off with that psychological label again. I also found out that they worship at the altar of an idiot doctor I have seen at another hospital. No doubt they’ve had a great laugh at my expense, silly woman convincing herself she has MG. Although I keep telling them I don’t care what it is I just want a name and a treatment plan, it seems that they believe that I am just a patient hellbent on getting a rare diagnosis. Rather than understanding the very human desire of needing answers.

 

There was no explanation as to why mestinon / pyridostigmine resolves my ptosis, other than it increases everyone’s muscle strength even if they don’t have MG. How true that is I don’t know. But even that contradicts the earlier statement that there was nothing wrong with my muscles. The fact that applying ice to my eye resolves the ptosis was also ignored, because to accept that would mean having to acknowledge that there is a problem at the neuromuscular junction. Anyone without a neuromuscular problem that has ptosis doesn’t get those results. I even took a freezer block with me to demonstrate but that was dismissed out of hand. There was no need they assured me.

 

I spent the whole time thinking that they just weren’t listening to anything that I said. Which in turn made the fight leave me, I am savvy enough with doctors now to realise when I am on a hiding to nothing. I just wanted to leave, get home, have a cup of tea and a cigarette. I had explained numerous times that I couldn’t see properly when I had ptosis out of the eye that didn’t have ptosis. The suggestion, which has to be one of the all time greats was and I am paraphrasing “that because it upset me the way I look when I have ptosis, to just use the mestinon when I leave the house”. Those of you who know me or follow this blog know I basically leave the house for medical appointments, that’s it. If I did as suggested I would never take it. It also ignores the fact it would leave me with very little sight for hours every day whilst alone for up to 12 hours a day whilst hubby works.

 

I asked why it was that my oxygen levels plummet why at times I struggle to breathe, why my legs refuse to work on occasion and was met with a shoulder shrug. It was suggested I speak to my gp and have more up to date breathing tests done. My gp isn’t going to do that when MG has been taken off the table. I have had them before and whilst they showed marked desaturation when I was up and moving around, I was accused by the doctor who organised the test (which was basically a pulse oximeter taped to my finger for 24 hours that recorded everything) that I was holding my breath. If I held my breath for as long as I had been accused of doing it, I would be a world champion free diver or dead. However I know now that due to PoTs pulse oximeters aren’t very accurate due to our circulatory issues, at the time of those tests I hadn’t been diagnosed with PoTs.

 

There is nothing quite like the kick in the teeth you get with a doctor that has already made their mind up about you before meeting them. I can only hope that my PoTs consultant goes on the patient he has met and not the neurologist’s opinion of the patient. I really hope that this hasn’t put our working relationship in jeopardy.

 

The only upside of yesterday was that I bumped into my PoTs consultant, who came over and had a quick chat with me. He was taking the mickey out of the healthcare assistant that couldn’t get my veins to relinquish any blood. I told him off as he has never once tried to cannulate me. I have made student nurse and doctors cry due to my veins being such bastards. He did find that very funny. Thankfully the second person to attempt taking blood did hit the jackpot first time.

 

I am allowed to continue taking mestinon as “it makes me feel better” – yep completely ignoring the fact that it resolves my ptosis and I can see. Had I been able to just get straight to the car and be alone I would have sobbed and sobbed. They made me feel utterly worthless, not worthy of further investigation because there is nothing wrong with me. You heard it here first folks I’m bloody cured!!!

 

* * *

 

Thankfully after a shitty day I came home to these beauties, two baby mugs with the puppies (although they will be 11 this year) names on. To go with their mums mug (Mollie) and their uncles mug (Travis).

Stressed

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?

Differences in thinking

A couple of weeks ago hubby and I were watching the local evening news, when a story came on that divided us completely. That doesn’t happen very often in this house, usually we are on the same page with most things. The story reported was disturbing to me yet provoked him to giggle. I am not saying I am right and he is wrong, we discussed both of our reactions immediately after the news item aired, it gave us both an insight into how male and female brains work. He was shocked at how most of us women view things and I got to understand why he reacted the way he had. It exposed the differences in our thinking.

 

Now before I go into this in any detail I need to say my husband isn’t a sexist pig, he isn’t even slightly sexist. He was outraged on Monday morning with how little coverage the England Women’s Cricket Team got on Sky Sports News, the headline being Chris Froome winning the Tour de France and then Jordan Spieth winning the Open. He felt that the England’s Women’s Cricket Team winning the World Cup should have been leading the news. He also loved the fact that two female chefs made it to the banquet on The Great British Menu, which we are still catching up on. He believes that women should be treated equally but that doesn’t mean he is a mind reader, knowing how we / I think and feel about certain issues.

 

The story was also covered in the local newspaper (which you can find here) for those of you who don’t have the time to read the article I shall give you an overview. A young woman in her 20’s was sat alone in her house when she became aware that someone was attempting to get into her property. As she walked into her kitchen she saw a man outside the window, masturbating. He had been trying to gain access into the property for around 30 minutes and obviously this young woman was terrified. She managed to get the man to leave her property but he continued to expose himself. Understandably, well to me anyway, the lady was shaken up by the experience.

 

My immediate reaction was revulsion and feeling angry that yet another young woman had been put through this ordeal. Yet hubby’s reaction was to laugh, now I am not going to lie and say this didn’t get my dander up. I don’t know if he was laughing because the very posh news reader was having to say the word masturbation on the evening news or that he genuinely thought the whole thing was funny. I was too cross at this point to ask him. However it became clear as I was talking to him, he had no idea that some (possibly most) females would feel threatened by this behaviour. He had no clue that many of us would panic and fear the prospect of being raped, should a man expose himself and masturbate in front of us. He had no idea that the female brain would make that leap (obviously he does now).

 

Now some of you reading this may think that I am over reacting but having spoken to several female friends about it, I know that my fear of sexual violence isn’t mine alone. A man, unknown to you exposing himself or exposing himself and masturbating in front of you is a frightening thing. For the man I am guessing it is all about the power of generating fear in his victim, he may get off on that.

 

I explained to hubby about my feelings regarding the story. That men who expose themselves tend to jump out on their victims or corner them when alone. I have never heard of a case where a man has exposed himself in the middle of the high street at rush hour (but that doesn’t mean it’s never happened). Events like these a premeditated they don’t happen by accident. Had the man who terrorised the woman in the news article  seen that there was a man present on the property the chances are he wouldn’t have done it. I won’t pretend I know the motivations of why a man would choose to terrorise another person like this but it makes me very angry. I am still angry.

 

Hubby had never made the connection that I made and many of my female friends made about the link from a man exposing himself to the fear of rape. Why would he? Although men are raped by both sexes, very little appears in the press about it, which only adds to the sense of shame for the victims. (statistics on male rape here )  He never realised the fear that an act of exposure / indecency could induce. He was quite shocked that this was how I felt. Why would he had known it wasn’t a subject that we had discussed in 21 years of being together. It made me understand why he didn’t initially see it the way he did because as a man he doesn’t see himself as a potential victim of any kind of sexual violence, whereas most women (I believe) do.

 

I think what made me angry about his laughter at the news item is the fact as a child I was the victim of sexual harassment / sexual assault.

 

I was 13 years old, waiting to meet up with friends before going into school for the day. I was dressed in my school uniform. The street was busy with kids arriving and a few adults were around. I became aware of a man crossing the road directly opposite to me. He was wearing big dark glasses and was using a white cane. As he stepped up on the pavement in front of me, he used the white cane to lift my skirt up, exposing my underwear for all to see. I was so shocked that I screamed, the man ran off, folding up the white cane as he left. He wasn’t blind he had merely used that as a disguise.

 

The kids that saw what happened laughed, no one took what had just happened seriously. Because of their reaction, I thought by screaming I had over reacted and didn’t say anything to the teachers. Now obviously years later I realise the man who did this to me was some sort of pervert or paedophile. At the time I hadn’t feared being raped, I was just mortified that my body had been exposed to numerous people without my consent. I feel guilty that I didn’t report the incident to the police or the teachers and that this sicko may have gone on to do this to other girls. However we are talking about an incident 30 years ago and things were treated very differently then.

 

That wasn’t the last time that I was sexually assaulted, in the early 2000 when I was at work, I assisted in escorting some rowdy customers leaving the store. As I was walking behind the two men, one of them turned around and grabbed my breasts. After they had left the store I raised it with the Manager (male) and he laughed. I was really angry and pointed out that I had just been sexually assaulted, I wanted the police called. I was basically told I was making a fuss about nothing. As I hadn’t found my voice then I let it go. Which obviously I now realise I should have made an enormous fuss, this was not ok.

 

Now on both these occasions I was in a public place and I didn’t fear being raped. However if I had been that woman alone in her house, with someone prowling around outside that would have scared me . Without then looking out of a window and seeing what she saw. I don’t think, well I know, I am not the only female on the planet that would have been terrified by this.

 

Now my husband understands the fear we as women can have, I can’t blame him for not ever thinking about it. Rarely do we think about these things unless we have had something similar happen to us. He was horrified that women think like that and he had no clue. No one should be made fearful in their own home or outside in the rest of the world, regardless of their gender.

 

And if you want to know he was laughing at the word masturbation being on the news. If different circumstances I may have giggled like a teenager also.

A good article on Everyday Sexual Assault can be found here.

This is a temporary state

I am struggling physically struggling at the moment. Mentally other than being frustrated by my lack of ability to do much, I am ok. I am so exhausted all the time it can make putting a blog post together extremely difficult. I can’t really concentrate and my mind wanders. So today’s offering is going to be short and sweet. It’s frustrating as I have a few pieces I want to write but just can’t, my arms won’t work properly to be able to type and my speech is buggered after a while so the voice recognition software I have installed is making a real hash of things or maybe it’s just me?

 

I am still currently waiting for an appointment to see the neurologist. Last Friday I emailed my PoTs consultant, as I wanted him to know that the mestinon was resolving my ptosis (as it always has) and that I was only taking half a tablet, 30mg as I know what a number 60mg does to me. A whole tablet works wonders on my whole body, it relieves the weakness and brings me back to my normal levels. However 60mg comes with consequences due to the bowel adhesions I have riddling my abdomen. To be blunt it feels like I am being disemboweled when I take 60mg, I don’t have diarrhoea or sickness with it, it just feels like someone is trying to extract my intestines through my belly button for around 4 hours at a time, until the dose wears off. I explained this to my consultant, who ideally would like me to take 60mg up to 4 times a day. You can understand my reticence.

 

I received an email back an hour or so later, letting me know he had forwarded on my email to the neurologist that he has referred me to. He was obviously keen to let her know that the mestinon works. I had explained to him in the email that I had taken a bit of a nose dive since I had seen him. I then panicked and must’ve read and re-read the email that I wrote making sure there was nothing in there slagging off neurologists. Neurologists aren’t my favourite brand of medicine, I have been treated appallingly by some in the past, although I landed on my feet with my neurologists last year.

 

On Sunday morning I received an email from the neurologist, which surprised me. I hadn’t expected any kind of response from her at all. She wanted to know if I had my appointment through yet to see her and could I let her know as she would chase it up. She wanted to see me as soon as possible. She also asked me to ask my gp to prescribe a medication called propantheline, this would hopefully stop the awful cramps / pain I am getting when I take more than 30mg of mestinon. Both she and my PoTs consultant want me on 60mg four times a day as soon as possible. I have taken propantheline before and it has been effective. I am hoping that it works, if and when it is prescribed.

 

So really that is all that is happening at the moment, I am just trying to keep myself on an even keel, not push myself to do stuff and try to not get too frustrated when my body refuses to obey my commands. As my husband told me this week in one of his profound moments “this is a temporary state”.

 

Voting (endorsements) have started on the WEGO Health Awards, my blog is up for Best in Show. If you enjoy my blog and have 30 seconds spare please click on this link and vote for me

 

https://awards.wegohealth.com/nominees/5611

 

Many thanks.

Limbo

Currently I am in diagnostic limbo, awaiting tests to confirm or deny the diagnosis of Myasthenia Gravis (again). It is a deeply frustrating time, whilst I wait around for my first appointment, I am essentially in no man’s land. Technically until proven otherwise there is essentially nothing wrong with me yet those who know me, know that what is happening at the moment is beyond my normal levels of crap health.

 

The hoops have already been set for me to jump through. Although my consultant has written to my gp requesting that he / she prescribes mestinon for me to alleviate the worst of my symptoms. A drug that is also used for PoTs although in this community it’s known as pyridostigmine bromide as it raises standing blood pressure. You’d think I was asking for crack cocaine to be prescribed. On Tuesday evening at 17:30 I had a phone call from the doctor’s surgery asking me to book an appointment to see my gp as the gp “wanted to speak to me about pyridostigmine bromide”. Now I maybe way off base but to me this doesn’t sound good. I raised the possibility of MG with this dr back in May and was essentially ignored, now they want to discuss it? I have never had an issue with my consultant asking my gp to write a prescription and it necessitating an appointment to discuss it.

 

* * *

 

I started writing this post on Saturday morning and was too ill to continue writing it. As you can probably tell I was a little wound up by the prospect of having to do battle with another doctor so soon. I have been getting weaker over the last few days, finding my legs turning to jelly along with my arms. The stress of waiting to see the doctor yesterday didn’t help. By the time it came for me to leave the house, my ptosis was the worst it’s been in a while with it also affecting my mouth, causing me to drool.

 

 

As it turns out I got myself all worked up for nothing. The gp wanted to ensure my understanding about Myasthenia Gravis, Pyridostigmine Bromide and to work on a plan for if I was to get worse before seeing the Neurologist. That was a weight off my mind, I am so used to having to attend an appointment and be prepared for a fight when it comes to MG, I couldn’t see it going any other way. It was such a relief. I know that the neurology appointment is a different kettle of fish but for the time being I can relax a little and work on being a bit more stable. I have had 19 days of ptosis (I still can’t believe I coped with this for nine months solid in the past) but now at least I have the medication to stop it in its tracks.

 

I decided to hell with it all yesterday on my personal Facebook feed and posted the photo that is above (but a colour version). I explained that Myasthenia Gravis was back on the cards again and that this is what I had been dealing with on a daily basis for 18 days (at that point). I always try to distance my own page from my health as I have had some really awful stuff said to me before. I tend to keep most things limited to my blog or my Myasthenia Kid Facebook page, so that people can choose to follow or not. I shouldn’t have to do that but I do because society can’t cope with an illness that doesn’t get better. It doesn’t understand that you can have good days and bad days. I find it easier to self censor than face the bullshit that comes with being honest. Sad but true.

 

So this is going to be a very short post as my arms are shaking from using the chromebook and I feel like crap. I can’t lie. Mestinon has been started and the same results as ten years ago achieved, as in my ptosis resolves within 20-30 minutes, longer if I am really bad and the weakness in my limbs lessens.

 

I did have a wry smile yesterday when the gp added to my notes “Myasthenia Gravis” but then I have been here before. Still currently officially in limbo.

MG or Not MG that is the question…..

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 know

 

Wonderful surprise this morning, I have been nominated for a Best in Show Wego Award. Thank you to whomever it was that has nominated me, it means a lot! Unfortunately WordPress doesn’t seem to support the badge I got to put on my blog but Blogger does.

You can find me here

 

 

 

Ptosis……again

I wrote in my post entitled  “Hello darkness my old friend”  last month on how I was getting Ptosis pretty much on a regular basis. It’s not as bad as it was in 2007, when I had it for 9 months solid but the amount that it is occurring is bothering me. It’s happening to some extent on a daily basis and when it’s full blown it is causing me quite a lot of pain.

 

The pain is in my forehead and in the back of my eye (right side, the same side as the ptosis). I remember it being painful in 2007 but I don’t remember it being this painful and painkillers don’t help at all. For the last three days solid it’s been a constant battle to keep my eye open. Once the eye closes completely that is when the pain begins. It feels as if my forehead is being sworn in half with a blunt implement. Then the pain behind my eyeball starts. I remember having headaches with it in 2007 but it was always at the end of the day, never as soon as the ptosis started.

 

Last week I’d had a few days clear of ptosis (if you wondered it’s pronounced toe-sis, the P is silent) and hoped I was now seeing the back of it for a while. Only to be bitterly disappointed on Sunday when it appeared out of the blue again.

 

It stayed for the rest of the day having arrived at around 3pm by 18:30 my forehead felt as if it was being crushed between the jaws of a vice, so I gave up and went to bed.

 

Monday morning I woke up and it was gone, I breathed a sigh of relief however in just a few short hours, I could sense that my eyebrow and eyelid were starting to droop. I get a strange heavy feeling when it’s starting, once this happens it can be anything from 30 seconds to an hour before it drops completely. Quite often this heavy feeling will be accompanied by an altered sensation in my face, as if I have a dental anesthetic wearing off. Once the ptosis has come on fully the jangling nerve feeling goes but will come back when my eye opens. I managed to capture the photo below just before the ptosis kicked in. You can see that my eyebrow has already dropped and my left eyebrow is starting to arch in a vain attempt to pull the other eye open again.

 

Within three minutes of the photo above being taken my eyelid and eyebrow had completely dropped.

I took some medication to see if that would open my eye and resolve the ptosis, it took well over an hour for it to work and then only lasted for two hours. I ended up going to bed in the afternoon as the pain in my forehead was savage.

 

Out of all my various symptoms ptosis is the one that annoys me the most. You maybe reading this having never experienced Ptosis and thinking “what’s the big deal?” If that’s the case I would ask you to tape shut (with medical tape not sellotape!) your eye for day and see how you get on. How bruised are your arms after losing the sight in one eye? How easy is it to perform tasks where depth perception is required? (Do not drive if you decide to try this!) What I don’t have for you is a way to give you double vision in the eye that isn’t taped shut, nor the feeling that your forehead is being torn in half. When it’s bad like Sunday and Monday, I can’t watch the TV or use my computer. The only thing I can do is lie down, listen to the radio or audio books. The whole thing makes me feel very unwell, the medication I take to resolve it can also leave me feeling pretty rank.

At the moment I am having to avoid long periods of time using screens as this is a trigger, I have no idea why. I am also having to limit my physical activity levels as not only am I get ptosis but I am also getting very weak muscles, that will shake and refuse to move. Walking when bad can feel like I am having to throw my leg forward from the hip-joint. Its most bizarre. Thankfully though, this week I have an appointment with my consultant and for the first time with him and in years I am going to bring up Myasthenia Gravis (MG) again. It is always scary bringing this up after what I have been through before when all the tests were negative, yet there seems to be more acceptance these days that there are patients who are seronegative (show no antibodies). Maybe it will be better received this time? It’s the chance I have to take. Is it so wrong to want to know what is causing the ptosis and what can be done about it?

On a lighter note I submitted a photograph I had taken into a competition for a local magazines Facebook Banner. The winning photograph will be displayed on Devon Life’s banner throughout July. I have until 1st July to get as many votes / likes as possible. So if you are on Facebook just click on this link and it should take you right through to my photo Link Here

The photo is the one below, it’s called Woodbury Common by Rachel Morris-McGee. Then all you have to do is hit the like button! Many thanks x