Myasthenia Gravis

A bit of a head scratcher

/ RachelMorrisMcGeethemyastheniakid / 4 Comments

Those of you who have been reading my blog right from the start will be well versed in my journey with attempting to get a diagnosis of Myasthenia Gravis, I was diagnosed with it in 2007, that diagnosis was removed in 2009. Since then on a couple of occasions I have had major issues with Ptosis and generalised muscle weakness and ended up being tested all over again. On every occasion it has  come back negative. So you could have knocked me down with a feather ( twice)  today when Myasthenia Gravis was mentioned.

I gave up long ago trying to find answers for why there are days I can’t take a deep breath . Why I struggle with repetitive movements and then find myself unable to move the affected limb. Why I am always battling this more in the summer than the winter. It seemed every time I mentioned Myasthenia Gravis I was laughed at by the medical profession and given another BS diagnosis. Now it isn’t that I want this condition, I could really do without daily ptosis unilaterally or bilaterally. I could do without the fact that all the time my mind is willing to do stuff but my body frequently lets me down and I am unable to do stuff because my body simply won’t move .

The last time I was investigated for it in either 2017-2018, I was told I had idiopathic hemifacial spasms. Which my then PoTS consultant laughed his head off at as it was very clear that the right side of my face wasn’t in spasm but was paralysed. In fact evry medic who has seen the photo’s has said that isn’t a facial spasm, basically the whole right side of my face droops making me look like i have had a stroke. From then on my PoTS wrote in my medical letters that I had a neurological disorder as yet undiagnosed. No more mention of MG. 

I left the diagnosis alone, there was nothing to be gained by continually going on about a diagnosis that all tests repeatedly kept saying I didn’t have. It made me look like I was only interested in getting that diagnosis and that I was “making” my symptoms up. I didn’t want to be considered a faker / malingerer / sufferer of somatization disorder. So I just shut up about it. Mentioning MG compromised my medical care, so I learned it wasn’t a battle worth fighting anymore. Despite the fact that I was always positive on the icepack test, following a doctors finger with my eyes causing nystagmus and a sustained upwards gaze causing ptosis. Because some doctors believed I was faking all those symptoms. To keep going on about it made me look like I was mentally ill. Sometimes you just have to let shit go and trust at some point no matter how long it takes someone believes you.

This morning I had to attend the major hospital near me, for the ongoing issues with my neck. The doctor was chatting to me and said about my medical history so I took him through EDS and the severe autonomic nervous system dysfunction. He then had a look at his screen and said “well what about your Myasthenia Gravis? That is quite serious”. If I hadn’t been wearing my migralense glasses and a face mask, he might have seen the look of shock on my face. I was for a second temporarily stunned into silence. I said answering honestly and in the least sarcastic way I could, “well the MG thing has been going on for years and the jury is still out on whether or not I have it, I take mestinon to help treat my PoTS and it also takes care of the ptosis and muscle weakness so I just get on with it.”. Nothing more was said.

He then went through my prescription medications and I said to him, “oh I also have home oxygen”. He asked me why I have that, so I replied ” I can desaturate very quickly sometimes or struggle to breathe, now that could be because of the undiagnosed Myasthenia Gravis or it could be the issues with my autonomic nervous system or a combination of both.” Again my reply was noted and nothing more said. I have had my oxygen machine for at least 10 years now. No one has ever attempted to remove it even though I have no one overseeing my care with it. 

As part of my physical exam the doctor did some neurological tests. I had to follow his finger with my eyes. Now not deliberately I promise you ( I woke up with a horrific migraine this morning and almost cancelled the hospital appointment ) I forgot to take my mid morning dose of mestinon, so I was feeling shit because my blood pressure was plummeting and sumatriptan was making me feel fatigued.  He made me follow his finger, well I must have looked bizarre as my eyes just couldn’t keep up. I got nystagmus and my eyes were rolling around in my head. I knew he was surprised as he did the same movement several times, each time it produced the same result. It surprised me if I am honest.

 I know that nystagmus during the neurological exam can be an indicator of MG. Obviously years ago I did lots of research on the subject to educate myself as I had never heard of MG when I was originally diagnosed with it. But I still wasn’t expecting it to happen when I had to follow this doctor’s finger. For so long I have ignored the symptoms I have and blamed them on other things or even accused myself of putting them on that when they happen like that it still has the ability to surprise me.

I never said anything at the hospital. Again I have learned it is better to keep your mouth shut and act like a dumb blonde than to look like you have spent hours on the internet researching stuff. It doesn’t do you any favours and again “appearing to know more than I should” has been held against me previously so I stopped doing it. There was nothing to gain from having the knowledge if the doctors assumed that you were faking your symptoms to get a diagnosis – which I wasn’t let me be clear. If I had any control over my life I would not have been ill health retired in 2008 giving up a career I loved, losing my financial independence, losing my ability to walk on Woodbury common, being socially isolated for long stretches. There was nothing to gain by me becoming sick and just so much to lose.

The second mention of Myasthenia Gravis came this afternoon. I got a summons for Jury service this week, which is a physical impossibility for me. I contacted my doctors surgery expecting them to do me a fit note / medical certificate. Instead they have printed off my Patient Summary Hospital Print out, which lists all my current prescription medications and my medical conditions. On the top line of the section marked Active Major Problems is Myasthenia  Gravis. It has the word probable alongside it but it hasn’t been updated since 2011 but that is at least a year after the diagnosis was removed. I also changed gp surgeries in 2011 so I am confused that if it is a clerical error why it has simply been repeated when they would have had that information in front of them saying that diagnosis had been removed in either 2010 or 2009. The diagnosis was poo pooed again in either 2017 or 2018. So why is it on this patient summary and being used by the gp practice and the hospital?

But it would also explain why the doctor at the hospital was talking about this as I am guessing this information would have been attached to my referral. It has me scratching my head. Does it mean they think I have a probable diagnosis of MG? Is it a clerical error? Because if it is there have been multiple opportunities to correct this. So many hospital letters etc all saying it isn’t MG. I am sat here just thinking WTF?

I don’t want to open up a can of worms by asking what that diagnosis is doing there as I have previously suffered serious breathing problems and was blue lighted to hospital where it was suspected that I was on the verge of or maybe having a myasthenic crisis. To have that removed and then suffer from major breathing difficulties again would be just my luck and the hospital writing it off as a panic attack or anxiety could be dangerous.

It is a bizarre place to be when someone brings up a diagnosis that you long ago thought was off your records. It is strange what is on these records as on the Majory Inactive side are a Diagnostic endoscopic examination of Right Knee joint surgery form 1988 – a life time ago!  Acute Pyelonephritis ( kidney infection) in 1999 ( I actually think that date is wrong as it was 2009 I was in hospital with that).  Laparotomy and division of band adhesion 8th July 1998. Again that one feels like a life time ago and it was an utterly hideous experience and very, very painful.

So I am sat here scratching my head again, do I say something and get a couple of errors corrected when I haven’t had access to all my notes and have no idea what information those entries have been based on or do I just leave it ? I just am clueless as to what to do.

Update on End of my Tether

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

Last week I wrote about the horrific migraine I had and as I stated when I wrote it just because the acute phase is over it doesn’t mean that you are 100% back to normal. I spent the following 7 days with a headache varying in severity. It took until Monday ( 25th May ) for me to finally be free from a headache and any other lingering post migraine symptoms.

I did manage to write a letter to my gp surgery on the Wednesday as I said I would in my blog post and that bore fruit. I have now been prescribed sumatriptan . The gp contacted me via a text message which was weird as I have never had that happen before and contained within the message was a link toThe Exeter Headache Clinic protocol . I have included the link just in case anyone is interested as I found it very comprehensive and have taken onboard all the suggestions contained within it.

I printed out the the protocol as I am useless reading off screens ( unless it is blog posts but they have to be broken up with frequent paragraphs, long posts with no breaks are an instant turn off for me as I just feel overwhelmed). I then made a list for my husband to get the OTC ( over the counter ) medications from the pharmacy at his place of work. I also asked him as I have a history of projectile vomiting soluble aspirin / paracetamol etc to ask the pharmacist about paracetamol suppositories. I did explain in my very long letter to my gp that projectile vomiting is a HUGE problem along with nausea when I get a migraine but that seems to have been glossed over. He was quoted the price of £62.50 for not very many. I’m afraid I simply don’t have £62.50 for medications, especially when I was already having to cover the cost of the suggested medications soluble paracetamol, aspirin and buccastem, with the supplements that I was also being asked to try to see if these also helped or reduced the amount of migraines I have been having. I have had to buy Magnesium ( taken very carefully to begin with due to the possibility of undiagnosed Myasthenia Gravis ), Co enzyme Q10 and Riboflavin ( Vitamin B2). I have to take these without fail for the next 8 weeks to see if they make any difference to the severity of my migraines or frequency. All in all I have had to spend over £50 on supplements and medications – thankfully my sumatriptan didn’t cost me anything as I get free prescriptions, had I have had to pay for it you could basically add on another £10 making it as near as dam it 60 quid in total. 

That really pissed me off….in a time when many people have either been made redundant / furloughed on 80% pay or are on Universal Credit for the first time in their lives due to Covid-19, my gp’s surgery was so out of touch that they didn’t bother contacting me to ask if I needed them to write me a prescription for the OTC medication so that I didn’t have to bear the cost. Thankfully neither my husband or my income has been hit due to the current global pandemic but we know that we are in the minority not the majority. It really grinds my gears that many other people who have been told to follow this protocol simply wouldn’t have been able to afford it or would have had to choose between food or medical treatment and surely that is very, very wrong in the 6th or 7th richest country in the world? I know had I been in a position where I couldn’t afford to buy the OTC medication ( let alone the supplements) I would have been far too embarrassed to admit this to my doctor or anyone. Poverty seems to be a thing that is really looked down on in the UK and many simply feel that those in poverty are somehow at fault for it when everyone ( except the very wealthy ) are one illness or accident away from finding their lives changed forever. 

The practical side of me kicked in, I know what a state I am in when a migraine happens. I am incredibly unlucky that my migraines 99.9999% of the time happen at night and I wake up with them either just starting or already raging. When I first started getting migraines at around the age of 8 years old, I used to get the classic aura, zig zag lines either black and white or primary colours or it could be that I would get tunnel vision or parts of my vision would disappear, usual in the central field of vision. It has been a few years since I have had that kind of migraine. For at least the last 4 years they have come on at night and when they do I am pretty much incapacitated immediately. So I decided that I would make myself a migraine grab bag. This bag or large zipped pouch really, would contain the soluble paracetamol, aspirin, sumatriptan and buccastem along with a bottle of water and a plastic pint glass. Just so I could “grab” that bag and know that I had everything in one place and not have to worry about trying to navigate stairs / call Mr Myasthenia Kid for help. Time is of the essence for me once an attack is underway as nausea sets in very quickly so there is a very short time frame for me to administer medications before it gets to the point where anything taken orally will be projectile vomited. 

The bag doesn’t look very big in the photo but it is at least 14 inches wide and 12 inches tall. I used this fabric as a) I absolutely love it and b) it is a totally different fabric style to the other zipped pouches I have in my room. Plus if I say to Mr Myasthenia Kid “the one with hippo’s on” he won’t need his glasses to identify it! It still has plenty of room inside it even though it has a bottle of water , a couple of plastic pint glasses and the medications within it.

I am still terrified at the prospect of the next migraine but I feel like at least I am putting things in place to help / get me through. I am now keeping a food diary to see if there are any obvious triggers ( when I was a kid there was coca cola, Halls menthol cough sweets, Scampi Fries and orange juice although none of these seem to have the triggering effect now – although I still can’t stand anything menthol). I have also bought myself a Migraine tracker book, which details when the migraine starts, finishes, symptoms possible trackers, things that helped etc. Which I thought would be a good thing to keep if the sumatriptan doesn’t help and I end up having to see a Migraine specialist. I couldn’t resist this one when I saw it

I am feeling prepared, still frightened but prepared. We shall just have to see what happens….