A bit of a head scratcher

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.

A hard week health-wise

The last week has been really hard health wise. I haven't been the sickest I have ever been but I have certainly been sicker than I have for a while. There is no "reason" that I can identify for this other than perhaps the decline in my health that I have been waiting for since we lost Mollie and Frankie. Stress, emotional upset and change can all upset my chronic health conditions and it seems everything wanted to bubble to the surface last week. I did just power on through which now I am wondering if that was the right thing because I am having more and more MG like symptoms this week - shortness of breath, limb weakness etc sorry I should have said my idiopathic hemifacial spasm the latest bullshit diagnosis for my Ptosis, totally ignoring all the other issues.

If I am honest there is only one symptom that has me terrified and that is when I will suddenly and for no reason lose the ability to take a deep breath. No matter how hard I try to suck the air in my chest fails to move. I end up taking a series of short breaths to minimise the panic that rises in me. I have an elephant sat on my chest who is refusing to budge and I know that if I went to hospital my breathing would be ignored and I would be labelled with a mental health condition rather than the fact that there is something going on at the neuromuscular junction which has been proved time and time again with the ice-pack test. Apparently for the latest neurologist I have seen for these symptoms back in 2017 I believe, it is just a placebo effect. Words fail me.

Sunday freaked me out a bit as well. I wasn't feeling great when I got up and knew there were a couple of jobs that I had to do, then I could sit around and rest for the remainder of the day. Once those jobs were completed I noticed my legs had become exceptionally heavy, like there were lead weights attached. I could walk but it was very slow and shuffling because lifting my feet was taking a supreme effort. I attempted to climb the stairs but that was impossible. I may as well have been sat at base camp for Mount Everest without oxygen, as those stairs were impossible. After attempting three I came back down on my bum and then wondered how the hell I was going to stand up again. Thank god for Mr Myasthenia Kid being home and with it happening on a Sunday. He could help me to my feet and get me to the sofa, plus organise my medication. 

You see I get to take Mestinon / Pyridostigmine Bromide for my PoTs symptoms. I usually dose as follows 7am 60mg, 11am 30mg, 3pm 30mg or 60mg depending on how I am feeling and then 30mg at 7pm. I have to be careful with Mestinon by body is extremely sensitive to it. Too much and I can be twitching all over but mainly my face and it can trigger terrible stomach cramps. It takes a lot for me to take another 60mg during the day but at both 11am and 3pm I ended up taking the full dose because without it my legs wouldn't work. My legs not working is not a PoTs symptom, it isn't an EDS symptom either. There is no medical explanation for this symptom, other than the fact the medical profession believe its all in my head. Which is why when my breathing gets difficult I panic. This medical condition that appears so much like MG / Neuromuscular junction disease will be ignored and it could end up killing me. I am lucky, my symptoms are mild but I have bouts like this especially when the weather gets warmer where my body fails to cope. I worry one day I will be so ill that the doctors refusal to think outside the box will mean that I will be killed by medical negligence and that is a fucking scary thought.

I mean if there is nothing wrong with my breathing......why have I had home oxygen since 2009? In the current economic climate of ongoing austerity since 2010 why if I don't need support for breathing on occasion why has this precious money wasting resource not been taken from me? Home Oxygen can't be cheap,  I have an oxygen concentrator a machine that pulls oxygen from the air and then feeds it down a nasal cannula at a purer form. In case of power cuts I also have to have a huge oxygen canister in the house, I have to notify the local fire-brigade and I am classed as a vulnerable service user by the people who maintain the power grid. The canister also impacts my home insurance cost. If I didn't need it I would get rid of it, not only are the canister and oxygen concentrator ugly they are taking up valuable space in my small home. So in an age of cuts to all services who is covering their arse by allowing me to keep my home oxygen? 

Home Oxygen won't save me if I end up in a full blown Myasthenic crisis. This is where the muscles around the lungs and the diaphragm become paralysed and can't move so you can't get the air in as when you attempt to breath nothing happens. In this situation you need to be in hospital on C-pap or Bi-pap or in the worst case scenario put into an induced coma whilst they ventilate you - sticking a tube down your throat and breathing for you ( intubation ).  Today as I am writing this the elephant has returned, breathing is hard. I took my mestinon at 7.30am already my right eye is starting to droop, its seems I may have to take my next dose earlier.

The Myasthenic like symptoms are the worst thing I currently deal with and I am lucky they are mild the rest of the time. Last week was like a smorgasbord of every medical condition I have. My PoTs symptoms were crazy - heat induced despite me upping the salt tablets ( to 8 a day ) there  were multiple episodes of pre sycope ( near fainting). I had vertigo luckily I caught that attack very early so I only had to endure the room spinning for an hour but it leaves me tired and feeling out of sorts. I had a migraine on Friday one of the worst I have had in months. It was actually the first migraine I have had since January 14th ( my last one was the Monday after Dembe came home with us). My Tinnitus has been so loud it has been difficult to hear the TV and radio. I have felt constantly exhausted .

Then there was the joint pain and my right shoulder continually fighting to escape it's socket. To be honest I have only scratched the surface of what I have dealt with over the last 7 days. I really don't like to say much most of the time because I don't want to be accused of moaning but if I stay silent about it people think that you aren't as sick as you claim you are. You just can't win, you're an attention seeker if you say something and a liar when you don't. It drives me nuts. I stay silent because to be honest it is easier that way. I don't want Jay aka Mr Myasthenia Kid worrying about me when he is at work, I don't want lots of platitudes on social media. It isn't because I think they are false it makes me feel like I am drawing attention to myself and trying to play the sympathy card and that's just not me. 

It's been really hard this week being a puppy mum, I love Dembe dearly, I wouldn't be without him but it is hard work trying to keep him occupied whilst using as little energy as possible. On the whole he is brilliantly behaved but like it is with kids there are days when he can be a little bugger and whilst amusing, it can be frustrating, especially when you aren't feeling well. He is just a puppy though at a little over 6 months old and over time he will calm down. I guess I was so used to Mollie, Frankie and Willow being older and more sedate this has come as a real shock. Jay does loads, he gets up and does his breakfast, he does all the walking and he comes home everyday for lunch to give me a little break and check I am ok. I take my hat off to those of you who are chronically sick and have children, I don't know how you do it.

It has been a hard week health-wise, I just hope things start to settled down very soon.

Hello Darkness My Old Friend

Last week was a bit of a nightmare. I was so fatigued it was ridiculous. I was sleeping hours but still felt like a zombie when I awoke. My legs felt like they were made of lead. My brain was sending the messages to them to move but they would refuse, causing me to fall over. When I could move them they felt as if they were made of lead. Climbing the stairs (which I limit anyway) felt like I was scaling mount Everest. Then on Tuesday afternoon, I recognised a feeling that I haven’t had in a long time. My face, eyelid and eyebrow were beginning to drop. I ended up going to bed for a lie down and slept for three hours. When I awoke the feeling was gone and I was relieved to have dodged a bullet. But I hadn’t, when I woke up on Wednesday morning this had happened.

Now I have a level of Ptosis everyday, normally unless you were specifically looking for it you wouldn’t know it was there. My eyelid droops to where the pupil starts to become obscured. That level of Ptosis I can cope with, it doesn’t affect my vision and it doesn’t tend to make me feel unwell.

Wednesday morning I woke up feeling horrendous, arms and legs both felt like they were made of lead. I was dizzy and due to my eye being nearly completely closed I couldn’t see very well. My forehead felt as if it was being ripped in two, with my left eyebrow arching in an attempt to keep the right eye open, only it was failing miserably. After a couple of hours I decided this really wasn’t worth the hassle of trying to stay out of bed. At 8am (I had risen at 6am) I gave up, took some HuzerpineA (like a herbal Mestinon as I can’t tolerate the real stuff) and set my alarm for 9am hoping when I woke up the Ptosis would be gone.

I gave myself an hour as like Mestinon this stuff takes about 20-30 minutes to get working. Plus I was also having a friend over, so needed to be washed and dressed before she arrived. I naively thought an hour in bed would be the magic cure. What an idiot! When it’s bad like this even proper Mestinon can fail to work. I should have realised when my alarm went off, that this was not a good day. I never fall straight back to sleep after being up for a few hours. I messaged the friend to advise them I would have to cancel, something I hate doing as it means I have knackered their plans for the day. She was absolutely fine about it but it doesn’t stop the guilt over cancelling. I text my husband to let him know I would be staying in bed for the day and that I might need him home if things got worse. I then went straight back to sleep.

Most of Wednesday was spent asleep if I am honest, I have a few brief periods awake mainly to get something to eat and have a cigarette. The fact that I was so utterly incapacitated scared me. This reminded me of the bad old days when I first got sick in 2007. How I had gone from working full-time to a year later being ill-health retired. I hadn’t been this sick what I call MG sick in years. Probably close to nine years, so you can imagine my shock, when this came totally out of the blue.

Thursday I woke up feeling an awful lot better but then by the afternoon was back in bed on home oxygen. I couldn’t take a deep breath in, as my chest just felt like it couldn’t expand. This really scared me as I have been blue lighted to hospital barely conscious due to breathing difficulties. This was exactly how it had started in 2008, I tried to walk across the lounge floor but stumbled as my legs wouldn’t work properly. The following day whilst hubby was out getting some shopping (helpfully forgetting to take his mobile phone) I had collapsed unable to take a proper breath in. I’d had to call 999 myself, trying to stay calm whilst the supply of oxygen in the house felt like it was running out.

There have only been a few times in my life I have been utterly terrified by my symptoms and that was one of them. I ended up being wheeled straight into resus, placed on oxygen running at 15 litres a minute and I still had very poor oxygen saturation. They  discussed with me about putting me into a medically induced coma and putting me on a ventilator. They wanted Jay to be at the hospital, I now realise it may have been to say goodbye, at the time I was oblivious and said he had to look after the dogs. I look back now and it moves me to tears. I wasn’t frightened at the time I was just exhausted from not being able to breathe.

I had all this running through my head again on Thursday, thankfully within two hours I was feeling much better but I had to spend the rest of the day in bed.

Gradually I have improved and back to my normal (but limited) levels of activity. However I am still having days where my arms and legs are refusing to work the way that they should. Today I was trying to do stuff around the house and I kept falling over my own feet as they felt as if they were stuck to the floor every time I went to move. I have started choking again (frequently) on fluids, something which hasn’t happened in a really long time.

It's frustrating that despite in many aspects of my health improving a great deal, no more headaches, much less joint pain since giving up dairy, that this has started up again after leaving me alone for such a long time. Thankfully I have a hospital consultants appointment coming up at the end of next month and I will be able to discuss it with him then. I think it maybe time to bring up the possibility of Myasthenia Gravis again as seronegative MG seems to be much more accepted than it was ten years ago.

This song was going through my mind the whole of Wednesday and Thursday.

Thank You

I just wanted to do a quick post and say a big thank you to those of you who have read my blog and taken the time to leave comments. It really means the world to me to know you care so much about me.

I bit the bullet yesterday and took 60mg it worked within 20mins and lasted 6 hours. However I did have some stomach cramps and a lot of gas! Not very lady like I know! My vision in my right eye was still blurry but I could see well enough to get on with bits and bobs.

Today I've had ptosis but it was just my eye brow drooping which made me look like I had a lazy eye. I have had more breathing problems today and have ended up using oxygen for a couple of hours. I had the old MG feeling back where you breathe but just don't seem to get enough air in to satisfy you. I took 30mg of mestinon which resolved the ptosis and made my breathing easier.

My tum is a bit raw from the mestinon this week. It is extremely unusual for me to take it more than once in a week. I only tend to use it if my eye closes completely, or both eyes close or I can't catch my breath. I have ptosis everyday but its usually very slight and doesn't close my eye just makes the lid droop, on those days I just tend to get on with it as believe it or not I actually don't like taking tablets. It seems ridiculous for someone who takes over 20 tablets a day to say that, but I only ever take what I need. If I can do without the mestinon I don't take it. Plus the side effects of mestinon are enough to put anyone off!

I can't remember who suggested 45mg instead of 60mg but thank you. Why I didn't think of that (slaps forehead!) I don't know but I think that might be better than 60mg at the moment. Also special mention to Rachel again .....thank you for looking up EDS that is so sweet of you. Unfortunately it is a painful disorder that not only affects your joints but your organs as well. The problem I have is I get weak muscles from both the POTS and EDS which causes my joints to be unstable. Hence my spine popping discs out left right and centre. If I have MG as well, (which come on its highly likely) what chance do I have with that making the muscles weak also!!!

Thank you again Em, Shalyn, Rachel, Minxy for your lovely comments. Sorry if I have missed anyone out. Going to finish up here as getting short of breath again and Hubs needs to get my oxygen up to me. No need to panic this happens a lot. I will also be taking 45mg of mestinon as that helps as well.

Thanks again xx

And yes I'm still waiting.....

Its now been a week since Oxford contacted me and I am still yet to hear from them in regard to my admission for tests. I was hoping that I would go in March but thinking about it, it will probably be April due to the financial year starting and new budgets etc.

I'm also waiting to hear from Dr Y regarding my request for a referral to London to see the pulmanologist there. Why does everything have to take such a long time? My breathing has been an issue again lately and I have had a couple of days where I have had to use the oxygen to see me through.

I'm really tired today. Hubby had some friends around to watch the superbowl and my god they were noisey. We did warn the neighbours that we had people coming over, the walls on the houses seem no thicker than paper sometimes! Everyone is still alive after eating my chicken curry so I'm happy about that.

Feeling sad today as it is exactly a year since I saw these guys. Yesterday I got a glimpse into normal life, lost the anxiety that seems to be constant at the moment. I lost the anxiety because I could live in the moment rather than have too much time on my hands worrying about the future and punishing myself for actions in the past. Nine hours alone everyday with very little human contact will do that to you. I hate it the fact that every moment seems to be clouded by this anxiety, over the most stupid things. Most of the time I can talk myself out of it or distract myself. But with so much time on my hands it can be hard to do.

I sat here again this morning and thought is this all my life is going to be until I die? I get up watch TV or Read or go on the internet, waiting for phone calls from my Husband or mum. Other than that no human contact at all? Thats why I write this blog, I'm shouting out into the world hoping someone will hear me and acknowledge my existence. Though I know through experience there are many others like me. Having contact with them through the internet literally saves me.

Please don't feel sorry for me, thats not what I want. I'm not sat here with tears streaming down my face. Its just this wasn't the life I had mapped out for me. These things just happen. Just when I think I have accepted my fate gracefully I start to resent it again. I just think when I have enjoyed myself and been caught up in the moment the next day or week can be extremely hard. It magnifies the solitude.

I have to believe that one day it will be different. This is the worst time of year as its so dark, gloomy and cold. You dont really see anyone. In the summer I will be in the garden and it will be wonderful.

Fatigue

Ok class todays topic is fatigue.

I'm a bit of an expert on this unfortunately. I haven't been able to post as much as I would have liked recently due to the fatigue I have been suffering. Also a few days ago my right eye kept closing which leads to double vision and typing with double vision is hard!

Everyone feels tired, I used to say frequently before I became ill "I'm exhausted" and usually with good reason too. I was exhausted, I'd probably worked a twelve hour day, walked the dogs for two hours that day and done the housework. Anyone after that can say they are exhausted. The kind of fatigue or exhaustion I'm talking about goes right down into your very bones and there's no rhyme or reason to it.

Most nights I sleep between 8-9 hours, before all this I slept 6 to 7. I had also been known to go to work on no sleep - after assisting with the whelping of nine puppies. I remember that day as it was beautiful, I also remember it because when I got to bed that night, it was Saturday, I thought to myself crikey the last time I was here was Thursday night.

Even as a teenager I never really had the duvet days that others had. I used to resent sleep, I thought it was a dreadful waste of the precious time we have on earth. I did sleep more after having Mono but even that wore off. I had never really been one to lie in bed all day. Once I was awake I was up and ready to go. Sleep overs were a nightmare for me. Even if we had been out clubbing until 3am I would still wake up by 7.30am, much to the annoyance of friends. I would end up going home before they had even woken up.

So now I'm a 8-9 hours kinda girl and if I'm feeling really rough during the day I will go back to bed for 2 or 3 hours and sleep some more. Sometimes I wake up really refreshed and feel like I have some energy, but most of the time now I wake up feeling groggy and disorientated. Every night at some point I will wake and shoot bolt upright in bed with the feeling that my throat has completely closed over and I can't catch my breath. My mouth is dry and there are tears running down my face. This used to really scare me, but it has become such a regular feature of my night time routine that I just grab a drink and then go back to sleep.

When I feel this fatigue that I now suffer with, its all encompassing. Even a rest or a period back in bed will not shift it. Every movement feels like it takes an eternity. Every limb feels like theres a fat toddler attached to it and won't let go.The worse thing about this fatigue is the inability to think straight.

I like to think that I am a reasonably intelligent person - ok my spelling can be off sometimes and I apologise for that! When I'm hit by this fatigue I can't think, even about basic things. I see patterns and connections with everything, its the way that I my thought process works. Even if its really obscure connections. I used to have a photographic memory, I could read a document and then recite it back to you almost word for word. When the fatigue hits I struggle to remember how to make a cup of coffee! (And I take my coffee black so there's not a great deal to think about). I can't trust myself to make rational or reasonable decisions. I feel like a liability.

I feel like I am a battery that has been drained of all its energy, but theres no way for me to get any more juice and recharge myself.

Sometimes the only way I can get a clear head is to plug myself into my oxygen concentrator for a few hours. Today is one of those days. I woke up in such a fog after having some really vivid dreams. I did feel a tiny bit short of breath and just ignored it as it happens most days. It wasn't until I went to have a shower that I noticed my lips were blue, as were my nail beds. I felt the temperature of my hands and they were warm so my nails weren't blue because I was cold. I had a shower and then rested for 30mins. It was nice as I could finish the book I had started last night.

I've been on my oxygen concentrator for around 2 hours and I feel perkier now than I have in several days. My mind is clear and I can think straight. My muscles are still weak and I'm still sofa surfing but my thoughts are clear and strong and I don't feel like a liability. Today is a day when I wont try and set the kitchen on fire by forgetting to turn off the ceramic hob and then placing something flammable or combustible on top of it! (Which is why I'm not allowed to cook unsupervised any more!) Today is a day where I wont forget to put the phone down and block the other persons line for hours and I mean hours! Today will be a day when I remember to take my medication when the alarm goes off instead of just turning the alarm off and then forgetting to take it. Life wont be so hazardous today.

My early warning system Frankie, my 3 year old dog is obviously not so sure that the oxygen will be all I need today. Frankie was born just over 3 months before I got ill and has only been away from me for a week. (He was sold to another family who then had to give him back to us as their children were allergic. They named him Frank, which we changed to Frankie. Had I know we would keep him his name would have been Monty as his Pedigree name is Monte Carlo baby).

Frankie is my early warning system and he's my boy. I call him my early warning system as before I have a big crash or become ill with something other than MG, he will not leave my side. As I type this he is lying fast asleep beside me with his head on my lap. He's been like this since I got up. Just before I am ill he sticks to me like glue. I can't even use the bathroom without him barging in. This ba
behaviour usually starts three days before it happens and will only stop once I have recovered. The girls although I know that they love me dearly do not display this gift. Normally all three dogs will stay upstairs alseep until around 1030am, then Frankie and Willow will join me downstairs and then Mollie will eventually appear at around 1300. Today Frankie has been stuck to my side wherever I am in the house. As soon as I got up he was at my side. Im hoping that what ever it is that has provoked this response in him isn't too serious and will quickly pass. However with his sudden behaviour change it looks like I could be in for a few more rough days.

I will keep you posted!

shades of grey...................

People with MG can suffer what is know in medical circles as a "Crisis". This is in a very basic level of explanation a term to describe a life threatening inability to breathe. In the most serious cases patients can end up having to be mechanically ventilated. A crisis usually occurs with poorly managed MG, the patient having an infection, stress or heat or it could be caused by some unknown factor.

The problem that MG patients have is that most neurologists have very little understanding of respiratory issues. If you are very lucky as an MG patient you maybe referred to a Pulmanologist. However if the pulmanologist has no understanding of how neuro muscular diseases affect the respiratory system, you can be in trouble!

I was referred to an excellent pulmanologist but his / her speciality was COPD, not neuro muscular disorders. When I was investigated for breathing problems which were backed up by the pulse oximeter that I wore the Pulmanologist had no explanation for why this was happening. The only conclusion he could reach was that I was holding my breath. Luckily my Neurologist and GP were concerned enough to provide me with Oxygen at home to support me when I was having problems. But this is as far as it has got. No further investigations have taken place and no one knows why my oxygen saturation plummets. Or why I can feel very short of breath and it doesn't show on a pulse ox.

With MG relying on a pulse ox can be dangerous. Patients having breathing difficulties can become extremely ill extremely quickly. This can all happen without any drop in oxygen saturation being recorded on a pulse ox. Oxygen saturation can be the last thing to drop as the issue is not with Oxygen but the amount of carbon dioxide that is remaining in the blood. The most reliable way for an MG patient to be analysed is to conduct an Arterial Blood Gas test. However these can be interpretted incorrectly and patients told that they are suffering from panic attacks, when infact they are struggling for breath.

This happened to me in January 2009. I had been struggling to breathe for most of the morning. By 1pm I could barely talk, my chest felt like it was being crushed and I had a real sense of panic. When the ambulance arrived my oxygen saturation was 92%. My venous blood gasses were showing I had a problem. But due to the fact I had no confirmed diagnosis of MG the neurologist on cal told the resus team to ignore all the information they had infront of them as he believed I was suffering from a panic attack. Thankfully my condition improved, but the outcome could have been very different.

Unfortunately in MG there is very little understanding on how or why the respiratory system is involved. For Neurologists on the whole the situation is seen as black and white. The way they see things is that you either have no breathing problems or you are in crisis, there are no shades of grey.

I have now spent a couple of years poking around on different MG forums and the consensous is that quite a few MG patients have issues with their breathing that are not being addressed by their neurologists. The people I have come into contact with around the globe all say the same thing - that their neurologists view the situation as in as long as you aren't in crisis then your breathing is fine.

The concern for me is this simply isn't the case and no one is addressing the issue or possibly even researching it. Surely if enough MG patients are reporting these symptoms to their neurologists this should be investigated. Unfortunately neurology seems to operate in a bubble, where there is only black and white and shades of grey do not exist.

Lovely Day

Had a really lovely day today, had a visit from E today. Managed to catch up on all the gossip and just generally chat. I ended up on oxygen though as I suddenly couldn't breathe and my face started going south! E's used to it now so she just asked if I was tired. I was tired but as I explained to her if I get in a bad way when I'm having fun I dont care! Its when I wake up crappy I get really annoyed.

We taught E how to play poker today! I have the feeling she could get quite mercenary if there was money involved! We just need to convert S now and we could have litte poker tournaments! It was hard going for me as I kept losing the plot and not remembering which cards I had and what cards were winning hands. Really good fun though, even with the oxygen concentrator chugging away in the background!

I emailed Oxford today to ask if the blood tests had come back as its 6 weeks now. Hopefully I will get a response soon. The physio department at the local hospital contacted me today for the stress test as Ive had to put it off again. The physio was really lovely and very switched on. Couldn't understand why I was being given oxygen at home but had no respiratory consultant and that no investigations were taking place. She couldn't understand why the GP thought there would be an issue with the PCT. She is going to contact the Respiratory Consultants secretary and ask if he will refer me to London or at least write to my GP to see if he can push things along. So at last something maybe happening.

Talking to the physio today restored my faith in the people that work in the NHS. That there are people that actually care and will do their best for a patient.
What a lovely day ......

17th January 2010

I can't believe that I haven't been on here for more than a year. Things have been pretty tough in a lot of ways and when I started this blog I had no idea how this journey was going to pan out.

So whats been happening? Well I started the blog in June 2008 when I had just spent a week in hospital. I was put on Prednisolone which helped to begin with and then I just started to get worse. It wasn't the transient weakness that some MGers have. This was an exascerbation of the condition. On top of that I was battling my now ex employers and starting a case against them for disability discrimination.

As the months went by I lost contact with more and more people. People that you thought were good friends and would do anything for you started to disappear.People that you had helped and stuck your neck on the line for, people you thought you would never lose contact with. They seemed to think that just asking your husband how you are when they see him is good form. Picking up the phone would be nice or popping around for a coffee even better. I spend 9 hours (at least ) a day, five days a week alone. Do you know whats crazy? The doctors in my neck of the woods think that I do this for attention. What attention? I live almost in exile from the rest of humanity.

In January 2009 I suffered what is close to what people with MG call a crisis. It happened over the space of a couple of hours. It felt like someone was pushing on my chest preventing me from breathing. We called an ambulance and when they took my oxygen saturation level its had dropped to 92%. I was wacked on Oxygen and at some point during the journey I started to lose consciousness. I could hear the guy talking to me but I couldn't respond. With that lights and sirens started. It wasn't scary I just couldn't understand the panic, I could here them but I was swaythed in this warm fuzzy feeling. Quite bizarre now.

What I fail to mention is that due to my decline whilst on steroids and my repeated negative blood tests, the diagnosis of MG had been taken away. (MG Myasthenia Gravis). I had been seen at Oxford by a Dr who decided I didn't have MG but was suffering from stress and ME. It was decided that the steroids should be tapered down and stopped. If more symptoms appeared I was to be referred back.

As soon as the steroids started to be tapered, I had more symptoms. Double vision, bilateral ptosis (so both eyes were closed I had to tape them open if I wanted to see), choking on my own saliva, choking on water or food. In January 2009 I was on less than 10mg of prednisolone and things were just getting worse.

I was wheeled straight into resus. My blood gases (venous) were taken and showed exactly what they should for someone who is having a crisis, mine were borderline. However due to the "rarerity" of this illness the results were misinterpreted as a panic attack. I went from one minute being told that they would probably have to put me into a drug induced coma (nice) and take over my breathing, to being told I was having a panic attack, due to the letter from Oxford being in my notes. From then on in I was treated with utter disdain by the medical staff.

Unfortunately 2009 was peppered with hospitalisations. I lost count I think it was about 6. The only time I was treated with any respect was in August 2009 when I had a kidney infection and was on a surgical ward.

In June 2009 I was in as I couldn't open my mouth and was very weak. I had a nasal gastric tube fitted, which actually wasn't that bad. However I truly believe that there was something written in my notes about me having munchausen. Ive asked for a copy of my notes but under UK law they can withold basically anything they like under the guise of protecting you. In my notes the doctors constantly make sweeping statements that are not related to my medical issues, make derogatory comments about my mother and my husband. They also cannot tell their left from their right. Which isn't that reassuring. I have ptosis and facial weakness on my right side of my face. This was constantly referred to as left side weakness!

Anyway the protocol for a hospitalisation now is Im either unconscious or dead. I wont go in otherwise due to the treatment I recieved on B ward.

In May 2009 my breathing problems were investigated. I had to wear a pulse oximeter for around 17 hours. This continously showed dips in my levels of oxygination on exertion. Now by exertion I mean just walking around or talking on the phone. I dont mean doing a five mile hike. Unfortunately the Dr that carried out this investigation is an expert in COPD not neuro muscular disorders. His opinion was that I hold my breath when moving around. Now thats certainly possible. However I had to fill in a chart detailing my activity throughout the day when I was wearing the pulse ox. One of the activities where my o2 levels dropped when when I was talking on the phone. You can't hold your breath whilst talking. Its just not possible.


Some how my husband and I (and mum) managed to convince my hospital consultant (neuro) that these breathing episodes (where I struggle to breathe) were real and I now have an oxygen concentrator and oxygen cylinder at home. This has helped a little.

So whats happening now?

Well the disease has progessed to the point where I struggle with everything. I tend to only leave the house for medical appointments or hospitalisation.

In December 2009 I went back to the Oxford clinic and was seen by a different Dr. I had explored the possibility of going to a clinic just outside Paris, the Parisian Dr had suggested this Dr at Oxford, so I bit the bullet and went back. Thankfully this Dr hasn't ruled out the possibility of whats known as Seronegative MG which is what I have said it is all along. Ive had bloods taken for a new more sensitive test that has been developed by Angela Vincent and her colleagues at John Radcliffe hospital in Oxford. This new Dr has said even if this test comes back negative it doesn't rule out the condition. The only thing that would is a plasma exchange. If I respond to PLEX its proof positive that I have MG. There are no other conditions being talked about.

I emailed my local neuro last week to update him on how badly I was doing. I haven't seen him since August 2009. Since then I have developed an allergy to penicillin and I also had a typical MG response to an antibiotic called Clarithromycin. The clarithromycin made my weakness much worse and even the mestinon I take every 4 hours could not improve it.

My neuro thanked me for my update, but refuses to do anything until the test results are back. I asked him what his position was on PLEX and he replied that if the Oxford Dr wants to do this he will have to arrange it to take place in his hospital. I still have no idea when I will see my local neuro again. Basically my local neuro who we will call Dr X has told me to fuck off and hes not interested. I have lost all faith in him. How can I trust Dr X, when in the copy of the notes I requested there are no comments there from him. How can I have faith in a man who will do nothing whilst his patient slowly deteriorates? My mum asked me how does he sleep at night? I answered with one eye open I hope as you can sure as hell know Im not the only person he has treated like this.

I understand Drs swear the oath "first do no harm". But the longer he leaves me the more neuro muscular junctions I lose. I face the fear that my body will no longer be able to replace those nmj's. The more damage this disease causes to my body and the less and less likely that it is that I will ever achieve remission. I get so fed up with the constant battle I face with the medical profession. It is a lonely place to be.

My GP isn't much better, we will call him Dr Y. Dr Y and Dr X worked together and Dr Y obviously trusts Dr X never to make any mistakes in patient care. Dr Y wont do anything without consulting Dr X. Dr Y told me in September that he is 100% sure I dont have MG. That would be fine if he had done some basic research on the condition, the tests, the flaws in the tests and the studies published in Medical journals the world over. I have spent the time researching all of these and know that it is perfectly possible to have MG and be negative on the tests, the data proves it. Unfortunately Dr Y and Dr X despite being given the information by me (and paid for by me) chose to ignore it. Dr Y is actually a reasonable Dr, if I ring him regarding any other conditions he is fine and trusts my judgement. He just hides behind the title GP and says hes not a neurologist. He has to be led by Dr X, but what if Dr X is wrong? Because he isn't an expert in the field of MG.

I have to email Dr Y shortly as I want a referral to a London hospital to see a pulmanologist that specialises in neuro muscular disorders. She wants to conduct a sleep study and look at the amount of CO2 Im retaining. The symptoms I am having are to do with CO2 not oxygen. Which is what I can't get X and Y to understand.

I hope Y will refer me. The battle continues