Dry Eyes

I got diagnosed with dry eyes over ten years ago, it could have been 15 years ago, I just know Travis ( our first Weimaraner) was alive then. How I found out I had dry eyes was due to the fact a cigarette end had blown into my eye whilst we were in the car. The agony it caused I will never forget. I had a burn to my cornea and thankfully no lasting damage but a few weeks later my eyes were feeling very sore so I took myself off to the eye infirmary where I had a few tests and found out my eyes were incredibly dry.

On and off for years they have been treated ( very poorly) with the first line treatment for mild cases of dry eyes hypomellose. That treatment in all the years I have been taking it does nothing, the liquid evaporates off my eyeball in a matter of seconds and I am back to the sore, itchy burning feeling I basically put up with 24/7. On the odd occasion when I have made a fuss I am given lacrilube to use at night, which is alike vaseline for your eyeballs. It is fabulous stuff but it means you can see fuck all for hours once it has been applied so has to be done when you are certain you are going to sleep.

I have brought up with numerous doctors that my dry eyes were getting worse, that I am waking up with crusty eyes that then burn and sting for the rest of the day. For some reason I just haven’t pushed this and have allowed myself to be fobbed off with the excuse that it is my medication causing my dry eyes as if this is in some way my fault. I am now coming off all medication that causes dry eyes – even though I have been put on these after the diagnosis of dry eyes was given.

On Sunday morning I woke up with with my eyelid stuck to my eyeball. That is as grim as that sounds. Only I didn’t twig what was going on until after I rubbed my left eye and it felt like the top surface of my eyeball had been removed. The pain caused my eye to water profusely. I also worked out that this has been happening for months to a much lesser extent, I keep waking up with a searing pain in my eyes, my eyeball has been sticking to my eyelid.

I realised quite early on, that I had an abrasion on my cornea but I just didn’t want to have to go to the local minor injuries unit with the high probability that they would send me onto the eye infirmary. I foolishly thought how bad could it possibly get ? I decided that I would ignore it in the hope that the pain settled because ignoring it has always worked so well in the past. We decided that we would take Dembe up to the local supermarket to give him some experience of dealing with a shop environment, noise and large volumes of people. He handled it like a pro and we were both so proud of him.

He is walking like a dream and has stopped jumping up at me when I am on my scooter. He now sits beside me and waits for me to give him a cuddle.

My eye pain was ok as long as I was 100% distracted, so I threw myself into binding a quilt I had made for Jamie aka Mr Myasthenia Kid. I wanted to get it finished and he wanted it finished and on his bed! I managed to get that done but as soon as I finished and no longer had anything to distract me the eye pain ramped up by about 500.

I actually waited until Monday to take this photo.

We decided we would start watching season 3 of Stranger Things. I sat with a hot compress on my eye because my logic was the heat would help it as they advise a hot compress with dry eyes. I was kidding myself still that the eye pain was dry eye and would settle. I lasted 20 minutes until I asked Jay to take me to the local hospital where they had a minor injuries unit. I knew (well I hoped they still had it ) that they had all the kit for an eye exam, I kept my fingers crossed that they wouldn’t insist on sending me to the hospital and the eye infirmary. As I knew the wait would be horrendous and sitting up like that for several hours would knock me for six.

Jay dropped me at the eye infirmary and he took Dembe out for a walk. I am extremely grateful that I was seen within 20 minutes of arriving. It wasn’t busy but there were other people coming in with more serious issues than I had. I was ushered in but immediately told that they would only do a basic eye exam and then send me to the main hospital as I had Ehlers Danlos syndrome. I questioned this as I knew it was just an abrasion and no need for the trek to the hospital ( one I hate due to a couple of twatish doctors based there). I was informed as the eye is made up 100% of collagen they couldn’t mess about. I was shocked that this nurse was so on the ball with EDS. Normally they are clueless, not their fault if they have never come across it I must add.

I made a few grumbling noises along the lines of its just an abrasion there is nothing wrong with the rest of my eye and that sitting for hours up there would make me much sicker in the long run. I had an eye test which I think I did reasonably well or well enough to convince her I wasn’t in danger of losing my sight imminently. So she acquiesced and did a proper eye exam. The local anesthetic stang like hell, it felt like I had a million paper cuts on the surface of my eye and she had poured vinegar on it. Once the stinging wore off it provided me with a lot of relief as the pain was dulled massively. She had a look at the structure of my eye which was all sound. She then added the lovely yellow stain that they put in and immediately could see I had a superficial abrasion right across the centre of my eye. I hadn’t been able to pinpoint where the pain was coming from my eye hurt and hurt more every time I had to blink. It made sense that it was right across my eye.

Me when I got back from the minor injuries unit. I was given antibiotic ointment, as my eyes were so dry it would provide some relief as it has to be put in 4 times a day. I was made to promise that if it wasn’t any better the following day I had to head to the main hospital and get it checked out. Thankfully it was an awful lot better the following day.

I have an appointment with my gp next week that I had booked for another reason – which I will still be bringing up! By the time I go to my appointment the local injuries unit would have informed them that I had an abrasion on my cornea caused by my eyeball sticking to my eyelid and that my dry eyes need to be treated! However as it is more than a week away I have spent £30 on dry eye ointment for night time to keep my eyes moist and to prevent them sticking to my eyelids again and some much stronger eye drops that should provide more relief than the tap water ( sarcasm but that might as well be what it is) I have been prescribed up until now and that someone saw fit to remove from my repeat prescription list. 

My eyes are still quite uncomfortably dry, I am awaiting my delivery of the day time drops as nothing I have here if I wish to be able to see at all will provide any relief. When people say they have dry eyes unless you have experienced it you would never realise how bloody painful it can be.

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Dangerous Medicine

We all know that all medications and that  medical procedures come with a certain amount of risk – the biggest  being death. However in this day and age you would think it would be virtually impossible for a patient to die of neglect. I know mistakes can happen, they shouldn’t but they do. Someone I knew of, was acquainted with has died this week due to being falsely diagnosed with FI – Fabricated Illness. You can read about Shawn here  (and yes the newspaper has managed to spell his name incorrectly.) 

We were ( the CSF Leak group ) so happy when he made his way to Germany where he believed he would finally get the medical treatment he deserved and which the NHS had denied him for so long labelling him as having a mental health issue and fabricating his symptoms to get attention. Because Shawn dared to question the expertise of those he sought help from and because his condition was outside the scope of their knowledge, that label was applied and prevented all other medics within the NHS to seemingly be able to view his case with fresh eyes and objectivity. They all seemed to just cop-out and follow the notes of his previous doctors. If enough doctors write on your notes that you have fabricated your illness, it basically means all help is withdrawn and Shawn had to die to prove to them how sick he was. When all he wanted to do was live. 

I am so angry and just so fed up with the medical profession’s arrogance and their inability to admit when they just don’t know. Too many people are being labelled as having a mental illness and when they eventually do get the correct diagnosis – the doctors are reluctant to remove the mental health diagnosis. I’ve had it happen myself, I ended up in hospital as my stomach had swollen ( I looked like I was pregnant with twins) and had reduced bowel sounds, I’ve had an intusscesception before as a child and I have had complications from bowel adhesion’s resulting in an open surgery to remove them. (info on intusscusception ) . As I was being examined a student doctor asked me how long I had been on seroxat ( an antidepressant) the year was 2010 and I had last taken seroxat in 1999. The suggestion being that the student doctor was already looking for a mental health diagnosis for my swollen stomach and reduced bowel sounds.  She seemed surprised when I suggested she had a look at my more up to date medical notes and that I hadn’t been on seroxat since 1999. She was forming an opinion on notes from 10 years ago. It must make life so easy if you can blame the patient for being sick.

On another occasion I was in accident and emergency due to the indwelling catheter that I was having to use blocking. My bladder and bowel had ceased working the day before so the district nurse had been called in and a catheter inserted to relieve the pressure on my bladder and allow the contents of my bladder to be emptied. Having had a glance at my notes before treating me the doctor asked me how long I had been suffering with somatiform disorder. An unusual question to be asked when a catheter is being removed from your urethra. Again the diagnosis was 5 years out of date but had failed to be removed. A tilt table test ( well two) had proved I had PoTs and Orthostatic intolerance and a private rhuematologist had confirmed my diagnosis of Ehlers Danlos Syndrome. My Beighton scale was off the charts as I was bendy in joints that were not included on the scale, along with my slow healing, wide paper-thin scars, stretch marks as a child etc etc.

It doesn’t seem to matter if you have a “proper” diagnosis ( not dissing mental health here I suffer with depression and anxiety) if you have a whiff of a mental health diagnosis in your medical records all problems from then on will be attributed to your mental health issues. Just take the trapped nerve in my neck and the numbness in my arm last summer being put down to stress. It was only when I was losing my ability to grip with my hand and had a proper examination was I informed that I had an impinged nerve and if Physiotherapy didn’t help me I would be looking at spinal surgery.

I know so many people who are struggling with depression and anxiety who refuse to reveal this to their doctors and get help because they know once the diagnosis is on their records ( and especially if they female ). Many of them in the PoTs group I am (one of) the admin for I reckon 99% of the 4k membership were told that they were suffering from anxiety when they first went to their gp about their palpitations / near syncope. It’s a nice diagnosis for busy gp’s who only have 10 minutes per patient. The problem is so many people with chronic conditions are hiding depression and anxiety because they know they will no longer be taken seriously that we are now sitting on a ticking time bomb and there will just not be the resources to deal with it when it finally goes off.

Medicine is getting dangerous, it is ignoring those that don’t fit the text-book definition of the condition they have been diagnosed with and doctors are handing out mental health diagnosis without a patient being assessed properly by a psychologist or even a psychiatrist. I was diagnosed with somatiform disorder by a neurologist. It’s like having a podiatrist conduct your open heart surgery. It’s not a situation that would be allowed but many doctors who have no formal training in psychiatry or psychology are diagnosing conditions that will have detrimental ramifications on their patients treatment forever. 

You can complain, you can ask for a letter to be put in your notes, explaining that you don’t have conversion disorder, Munchausen by proxy, Fabricated Illness Syndrome, Somatiform disorder but doctors can and do choose to ignore it. Keep shouting loud enough that you don’t have the condition and it just acts as more proof that you are mentally unstable. Cry in a medical appointment discussing these falsehoods contained within your medical notes and you will be diagnosed with depression. You can’t win, the doctors hold all the cards and something has to change because too many people are dying due to neglect. When I mean neglect I mean wilfully denying treatment due to arrogance or ignorance. It makes me sick to my stomach and I am so very fucking fed up with it.

The other one they like to use against you is medical knowledge, even if you come from a medical background like nursing and would know about the condition or symptoms you are talking about. I don’t have a medical background so have had to research things because I can not trust the doctors to do it. The last time I trusted a doctor I ended up almost needing spinal surgery, as they told me my neck pain and numb arm was stress.

 Know too much about the condition and you are spending too much time on the internet looking up syndromes to have – real words spoken to me by an NHS consultant when I told him I was feeling the sickest I had ever felt. A few weeks later I was diagnosed with Meniere’s disease and a few weeks after that I found that my prolactin was raised and it was possible that I had a pituitary tumour ( thankfully I didn’t but we never found out why I was lactating or why the prolactin had been raised).

I have used the countless examples of where mental health diagnosis has been used as a cop-out by doctors to excuse their laziness / unwillingness to pursue the answer / outside their skill set on me to illustrate the point of how easy it is to suddenly find yourself fighting to be heard when you know you are sick. It is not in any way to take away from Shawn’s tragic story.

I am so angry because I have lost friends and relatives from medical cock ups. My dear friend who passed away last year was incorrectly diagnosed with COPD, only to be dead from lung cancer 7 months later. How they missed the tumours in her lungs and the one at the base of her spine I will never know. It wasn’t like she hadn’t had all the appropriate scans. The same mistakes keep being made and no one is learning the lessons the health authorities keep saying that they are.

I will defend the NHS and its principles with my dying breath but I can’t defend shoddy workmanship. The rotten apples need to be removed. The lessons do need to be learned because Sorry is no good when the patient has died.

 I feel quite strongly that we are living in a time of very dangerous medicine, where the cheapest disease is the one diagnosed, where tests are denied when there is already a mental health diagnosis present of which the patient is either aware of unaware of. The system is broken when patients can no longer trust their doctors to first do no harm.

For more information on how easily you can have an erroneous diagnosis applied to you please check out the links

It also usual plays straight into their hands if you are female.

Functional neurological disorder / conversion disorder

Medically unexplained symptoms

Conversion disorder / Somatisation disorder

Management of MUS

Factitcious Disorder

munchausens-syndrome

 

Medical arse covering

I know that this blog is called the Myasthenia Kid and yet of late I barely mention any Myasthenia like symptoms. Let me assure you I suffer almost every day with MG like symptoms. I think after my treatment at the hands of Doctors in 2009 and 2010, I just shut down. Those doctors who were the supposed experts did such psychological damage to me that I struggle even now ten years later to vocalise when the MG symptoms strike.

Currently the ptosis I suffer with ( daily to varying degrees) has been diagnosed as idiopathic hemifacial spasms ( and they ignore the fact that mestinon cures these “spasms” in around 20-30 minutes). The treatment suggested back in 2017 was Botox injections, funnily enough though no one has stepped up to do these injections, could that be because 1. I don’t have spasms my face is paralysed and 2. Botox and MG are contraindicated?

Its like the home oxygen supply I have,  apparently I don’t have any issues with my breathing well other than the suggested breath holding by the twat of a pulmanologist I saw ten years ago….. yet I have an oxygen cylinder and an oxygen concentrator. Do you see the running thread here at all? One might suggest there was a hell of a lot of ass covering going on here.

I have breathing problems on quite a regular basis. A lot of the time the shortness of breath can be alleviated with a booster dose of mestinon… you know the tablet that doesn’t work. On my very bad days I will use my oxygen concentrator. Tonight maybe one of those nights. I know why this is happening it is because I have been pushing myself so hard physically the last few days trying to get jobs completed. It’s the first time in around a year that I have done this much and as usual I have totally ignored the fact it will knock me on my ass.

Due to me having PoTs I take mestinon (also known as pyridostigmine bromide). It raises standing blood pressure, I can’t say that I have noticed any effect on my blood pressure but it really helps with the Ptosis and muscle strength which I lose as the day goes on. But obviously the muscle strength thing is all in my head and the ptosis resolving is the placebo effect. I just think it is another case of arse covering.

Some days when things are really bad the mestinon does nothing. It doesn’t help the breathing or the ptosis. Those days I stay in bed and pray that I don’t need the hospital. Years ago I told Jay no more trips to hospital unless I was unconscious or I asked specifically asked. I don’t do hospitals anymore because I always get treated like I am a time waster who “thinks” I have Myasthenia Gravis. 

Even though I have multiple conditions now diagnosed, some doctors still ignore all that – even with the positive test results and jump straight onto the fact that I was diagnosed by a neurologist with somatiform disorder – notice I say a neurologist. Which is a bit like asking a cardiologist to do spinal surgery.  They also like to bring up my mini breakdown in 1999 – yes 20 years ago and use that as a reason why I am unwell. Despite the fact I went many years without any depression due to the hard work I put in through two years of counselling and CBT.

Yes at the moment I am suffering with depression and anxiety which I would consider perfectly normal considering the losses I have dealt with in the last two years. I have lost 4 friends, my grandmother and my three dogs. Obviously Frankie and Mollie passing within 7 days of each other really knocked me back. I ended up speaking to a doctor last week – more on that in a second, and had my antidepressant dose raised and was given some diazepam for when I can’t get out of the panic cycle. Thankfully since the antidepressants have been increased and I have the diazepam I have been feeling quite a bit better. It’s just as well as I have to be honest I really wasn’t coping, I was doing a great job of masking it and some people can’t get their heads around high functioning depression. Believe me I can keep going even when I feel dead inside. It takes a lot for me to finally crumble. And last week it finally happened.

Anyway a slight diversion just for a laugh, I am on the phone breaking my heart to this doctor, saying about the panic attacks, the anxiety, the grief and the depression. I kid you not I was asked if I had considered taking Kalms (  see what they are here ) and then the piece de resistance had I tried rescue remedy (here ) if I hadn’t been breaking my heart I would have launched at her. What the hell was she doing ??? look at the medications I am on does she not think that I am way past some fucking Kalms and 3 drops of rescue remedy? I couldn’t get off the phone quick enough, despite that she still managed to bang on about using meditation. I pointed out it doesn’t work for me and leaves me feeling worse.

I do a guided meditation when I can’t sleep and my mind goes nuts with useless information flying through it. It makes me seriously worry that if someone was suicidal this berk would have offered them St Johns Wort and wondered why they hung themselves. Obviously the last sentence isn’t funny its a genuine concern, when depression isn’t taken seriously and the problem here was a locum gp who wasn’t aware of my magnificent mental health history, they may try to fob someone off with mindfulness. Mindfulness is fine when people feel a bit down or stressed but it won’t treat someone who is very / severely depressed. Same as rescue remedy will not treat Generalised anxiety disorder or OCD. It is only because I can and do speak up for myself that I got what I needed, increased meds and some extra meds. I knew I just needed a bit of breathing space to put myself back together. Had I not forced the issue, well I don’t want to think about it really because I was teetering on the edge of becoming seriously unwell.

Anyway I digress, don’t I always. The way I have been treated by the medical profession especially any time that Myasthenia Gravis is raised has left me with a fear of doctors and a phobia of hospitals. I have spoken to so many other people with chronic illnesses who say the same. We stop going to the doctor because we know we will be fobbed off.

Take the doctor in July who told me the pain in my neck and the numbness in my arm was stress. In December I went back, because I was now losing my grip and the numbness was worse and I am told I have an impinged nerve, I need physio but the doctor believes I will probably need surgery to decompress the nerve. Thankfully I have avoided that by paying to see my private Physio. Someone who works with me and lets me know that she understands I know my limitations and she can’t push me.

So no the MG symptoms haven’t disappeared I doubt they ever will. They will just be a host of additional symptoms that no one is prepared to say without a positive SFEMG or blood test what it is and lots of medical arse covering will take place.

Me on Monday afternoon. Does this look like a spasm to you or paralysis? As you can see both eyes are trying to close. My right pupil has drifted to the side of my eye socket. The left eye is desperately trying to stay open by pulling the eyebrow up but as you can see the eyelid is trying to close. The fuckwittery I have to deal with is outstanding!

It would be you

Yesterday was our 18th Wedding anniversary, we celebrated in style with a planned trip to hospital where I was booked in for a short Synacthen test ( as my cortisol levels were low or rather were in 2015 but my old consultant had never bothered to conduct this test and I had found this test result on going through some old letters) and a caffeine infusion. As this had all been booked in last Thursday by my hospital consultant we had presumed things would go smoothly. How silly we were, nothing ever goes smoothly for us.

The short Synacthen test is supposed to be conducted at around 9am in the morning when your baseline cortisol levels are at their highest. In 2015 I had been tested at 10.15 am just to check out the level. The cortisol level was found to be 107, I have written about this in a previous blog post. Basically my old consultant had said in a letter to my GP that he would run the short Synacthen test…..like a lot of things he said it never came to fruition. He promised to do a lot of things and never actually did, which amongst many things was the reason why I left his service. When I showed my new consultant ( new as in from December 2015) this letter the test was booked in for the following week.

When we arrived at the hospital yesterday immediately we asked about getting the short synathen test started and no one knew anything about it. I had to keep asking for anyone to take any notice. In the end they had to ring my hospital consultant to confirm he wanted this test to be completed. This was not my consultants fault whomever was supposed to have booked this onto the system hadn’t. The caffeine infusion was showing but not the shirt synacthen test. There were also issues with the caffeine infusion as the drugs had not been brought up from the pharmacy. So before we even got started the phrase piss up and brewery were already rattling around my head.

you can find info on the test here https://www.netdoctor.co.uk/medicines/liver-kidney-urinary-system/a7597/synacthen-tetracosactide/

A set of obs were done and then they said that they would put a cannula in and send me off for a coffee whilst we waited for the caffeine to arrive and my consultant to confirm he wanted the Synacthen test performed. I had to shoot down the idea of putting a cannula in early, its been done many times before and all that happens is it either blows or the vein collapses and the site can’t be used. We then have to go back through the fun of finding a vein that will co-operate. Thankfully after the staff talked  with the duty doctor, I was believed and the attempt at getting a cannula in early was dismissed. 

The time was now 9.50am, we had left the house at 7.20am, our dog sitter had to arrive at our house at 7am. The promise that we would be home by 1pm was starting to fade. The short Synacthen test takes an hour, the caffeine infusion takes two hours. We’d been at the hospital for an hour and were no further on than when we first arrived. Jay wheeled me down to the cafe where the queue was out the doors and there was no spare tables. Jay got us a drink from the newsagents and he got himself some breakfast in the form of a pasty. We got back to the waiting room at 10.30am. At 10.45am I told Jay that if we weren’t in the treatment room by 11.30am I was leaving. My head was having a bad CSF leak headache day. Being in a wheelchair means I can’t lie down and the chairs in the waiting room all had arm rests so it meant I couldn’t lie on those either. I tried to distract myself by doing some embroidery but the pain was making it harder and harder to concentrate. At 11am I asked Jay to ask the nurses if I could have some pain relief, just some paracetamol and oramorph. Normally I would bring my meds with me but for some reason I had forgotten.

At 11.20am I sent Jay into the treatment room to ask the nurses if there had been any progress on the caffeine infusion, I had given up on the synacthen test taking place. We were told it was all ready for me and to come on in. The nurse in charge brought me over some pain relief two paracetamol and codeine. It really pisses me off when hospital staff who despite seeing your prescription list decide that your pain doesn’t warrant what you would take at home. I hate the fact that hospital removes all autonomy, I manage my conditions better than any doctor or nurse ever has, yet when I go there they assume they are the experts. I pointed out that should I take the codeine I wouldn’t shit for a week and yes I used that language – because I had been sat in my wheelchair for 2 1/2 hours at this point and was in a serious amount of pain not just from my CSF leak but also my hips and spine. The codeine was binned and I got the oramorph I had requested.

I was then informed that they were going to now do the short synacthen test. Looking back now I believe they still didn’t have the caffeine from the pharmacy at this point and were doing this test to pacify me after basically doing nothing for the last two hours. You can imagine the shit they would have given me if I had rolled in 2.5 hours late for my appointment yet the same courtesy wasn’t extended to me. I am a massive supporter of the NHS, I am terrified at the Tory dream of turning it into an insurance based system but when there are 8 staff stood around chatting – and no it wasn’t about patients then you see that something really needs to change. I don’t want patients to become consumers or clients but I want them to be treated with the same respect that the doctors / nurses all seem to demand. They don’t seem to realise that there is a life for the rest of us outside of the hospital.

The first attempt at a cannula site was a bust, the vein blew . This was the state of it last night, the bruising is much worse this morning but thankfully it doesn’t hurt

The second attempt was fine but as soon as the Synacthen was injected I didn’t feel right . Sometimes I can feel a bit weird / light headed when blood is being drawn or I am getting an injection. Within a few minutes it usually passes. This however didn’t pass, I started to feel sick and dizzy. Then out of nowhere my face started to burn, it felt like it was bright red and was stinging. I said to Jay “is my face red?” he replied ” yes it is but it’s very hot in here”, I tried to let the growing sense of unease go but at the 15 minute mark when I was feeling more and more out of it I asked Jay to get a nurse and let them know I wasn’t well. All the sounds in the room had become too loud and I could smell a very strange smell, like cooked liver and over boiled veg. I kept complaining to Jay about it but he couldn’t smell it.

After seeing them stood around quite a bit all morning suddenly all hell broke loose. My bed was surrounded by 6 staff including the treatment room sister. My Obs were being done and piriton (IV) was drawn up. My normally low blood pressure that sits at 100/70 -90/60 was now 147/98 unheard of for me. My body temperature was now 37.9 having been recorded at 36.6 at 9.30am. My pulse was irregular at racing at 91bpm. I told the Sister that my blood pressure is never high and was told I was anxious due to having an allergic reaction. I couldn’t be bothered to argue as I was very frightened because I just felt so very unwell. Initially the IV piriton helped but after 10 minutes I could feel the reaction starting to come back as my face started burning and I started to feel very ill again.

Jay went and got the nurses attention again and I was given IV steroids. I have never had a reaction so severe that I needed steroids. This had been my worst reaction to date. Within 20 minutes of the IV steroids I was back to normal but then we had to wait around and be observed to ensure that the reaction didn’t start up again. I was fully checked over by a dr and at 1.50pm 5 hours after we arrived I left the hospital, with no caffeine infusion. I declined the infusion as I just wanted to go home and the staff were also concerned that although I have had the infusion before after reacting to the synacthen it was more likely I could have another bad reaction.

We finally made it through the front door at 3pm. A few hours after being home I emailed my hospital consultant who told me in all his years of being a doctor I was the first patient he has known to react to the synacthen test and then he said ” it would be you”. Basically if there is a weird reaction to have I’m your girl. He also backed the decision not to have the caffeine infusion.

I have been left with raised red bumps / rash on my face which always happens after I have an allergic reaction. That will fade over the next two weeks and I will get very dry skin which will peel off as the rash is fading. It’s a bit sore from being so dry but it’s still nowhere near what I went through yesterday.

This morning I feel like I have been run over by a bus. My HS has flared up on both sides of my groin and I have a serious amount of joint pain. For the next few days I am going to take it very easy.

Human Barometer

We often joke in the EDS community that we are the human equivalents of Barometers. Any sudden changes in air pressure and you’ll find us suffering with a myriad of problems such as migraines, excessive joint subluxations (partial dislocations), dislocations, joint and muscle pain. This week I feel like I have had them all.

 

Monday started with a bang, I felt like someone had smashed me in the face with a shovel. This lead to me spending most of the morning lying in a darkened room. Until I suddenly had a brain wave and decided to see if putting a soft neck collar on would help at all. I have always held a deep suspicion that my migraines are triggered by my neck being hypermobile, I get a lot of pain and stiffness in my neck overnight. I always wake up with a migraine, very rarely do they start when I am up and about during the day. Within minutes of putting the collar on my head pain had reduced by half. Within two hours I was pain free but exhausted and still feeling sick. However anything was better than having the head pain.

Tuesday started on waking with a gnawing pain in my coccyx – right between my bum cheeks to be honest, hence why there are no photos! I have had massive problems with my coccyx this year after slipping on the snow and ice back in March. At the time I was much more worried about my head as I managed to crack it on the back door step. The lasting injury has been to my coccyx, which has resulted in me having to buy special cushions to sit on and to lie down in the lounge whenever I can to take the pressure off. I’ve lost 2 ½ stone over the year and you’d think that my joint pain would be getting easier but it isn’t. The coccyx pain is very uncomfortable, Tuesday it joined in with severe lower back pain which lead to me giving up and going to bed a 4pm. Only after applying my Tens machine for 4 hours did I have any notion of relief. It really was exceptionally painful and made me feel sick. No matter what pain medications I took the pain remained causing my buttocks and the backs of my thighs to spasm. I will be honest I really didn’t know what on earth to do with myself. It wasn’t even particularly stormy here yesterday just a bit gusty but obviously the weather and the air pressure were drastically different to the stable weather – but way too hot in the summer.

 

Today (Wednesday) the UK is being battered by another storm and my body feels like it spent the night being battered by a shovel. Since waking various parts of my body have been covered with a hot water bottles, with very little effect other than to make me sweat a lot as despite the fact the weather is very windy outside the temperature is very warm.My body is overheating constantly at the moment which is leading to me dripping with sweat at the drop of a hat. Either that or I have hot the menopause! So what hurts today? Today as most days I have pain in my lower spine and coccyx, my fingers are swollen, stiff and sore. My ribs feel like someone decided to attack me with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a 

with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a piece of 2 by 4 ( wood ). Other than that, I am groggy as hell with the constant waking up last night to take more pain relief. This is not a good day but I have been expecting a run of bad days after having a reasonable week last week. It’s the way it goes plus add in a few storms and my body reacts badly to the change in air pressure.

 

 

I forgot to mention that my shoulders are slipping in and out of  their sockets, making a terrific crunching sound as they do. Today nothing other than just surviving will be done. When I say just surviving I mean lying on the sofa hoping at some point the pain relief I have taken kicks in. There will be no enjoying myself, doing things that I like to do. It will be a case of just riding it out. That’s the way this chronic illness lark works. I may have a run of a few good days but they will be followed by several if not more bad. Which is why when its good ( when I say good I mean better than a bad day) I tend to cram as much in as I can.

I’m sick of this pain, especially when it’s like this and no painkillers touch it. It’s not a pain where you scream and shout it’s a nonstop constant bone gnawing pain that escalates as the day progresses. Sometimes it takes my breath away, it makes me miserable and snappy. I hate the way it can completely change my personality from laid back and kind to nasty and angry at the world. Unfortunately those closest to me bear the brunt of it, with me losing my temper very easily. A technique I have learnt to avoid me lashing out is to just go quiet and not speak. That way I can be horrible to those I love the most.

 

Thursday brings more storms and a trip to see my hospital consultant which is more than an hour away by car. It’s a crack of dawn appointment as well so 90 minutes after this blog post is published I will be on the road. I will have had to get up at around 4am so that I can pace myself whilst getting washed and dressed. I am not looking forward to using my wheelchair as sitting upright at the moment is so painful, added in the 2 hour car journey (there and back) and I will be wracked with pain….again.

I do have a lot to discuss with my consultant, I haven’t seen him since March, it’s a necessary evil – he’s not evil he’s lovely, just the journey is torturous. I have developed numerous issues since I saw him last and I need to get to the bottom of them. One of them is the possibility that I have got Sjogren’s Syndrome ( I have had dry eyes for years but the eye drops are no longer working, my mouth is dry so I am getting numerous cavities and my tongue is sticking to the roof of my mouth when I talk). I need this to be looked at as my eyes are just so painful and with my pathological hatred of the Dentist I need the cavities to stop.More information on Sjogrens syndrome here.

This is such a down beat post and for that I am sorry. I had such a lovely week last week seeing friends and managing to make some bits and pieces.

 

The Christmas wreaths had been half made since August so I managed to finish those by adding hanging loops and bows.

 

I also made a number of Travis bags.

Consultant Letters

A few weeks ago I requested all my consultant letters from 2015 onwards. I like to have copies of things as it keeps me straight, doctors are human beings and things get missed. However I wasn’t quite prepared for the amount of untruths, information about my health that had never been passed onto me and test results that had needed urgent action that had never been acted upon. I spent around 30 minutes just having a quick read through, as you can imagine there were probably  100 of pages of information – most of it irrelevant just showing what prescriptions I had ordered and when. But if I found all this in 30 minutes what else is lurking in my notes that hasn’t been acted upon, is a major untruth or I have never been told?

 

I want to state for the record I have no problem at all with my gp surgery, the things i have spoken about should have been relayed to me by my various hospital consultants. I can understand why my gp didn’t bother telling me about the arsehole I saw in 2015 whose letter is so full of mistruths that I wonder if it was actually my appointment he was reporting on, my gp at the time was probably concerned for my mental health. Although we did have an appointment quite soon after seeing this doctor and I made my feelings about him quite clear. Usually my old gp would rush to the defence of other medical professionals if I was voicing a negative opinion, his silence on the matter should have alerted me to the fact he wasn’t that impressed by this so – called – expert.

 

So what did I learn from this quick perusal of my consultant letters? Well I have never been naive enough to believe that I or any patient ever receives the same version of a letter your consultant cc’s you in on – actually tell I lie I know one of my consultant always sends me the same version as he never changes who it is addressed to – never me but my gp. I have seen this in the past with the version I received from one doctor telling me that he was going to do a trial of plasmapheresis to rule out Myasthenia Gravis, only for me to read the letter he sent the consultant where he categorically states I do not have MG and he thinks that all treatment for MG should be stopped. It made me look like a liar when I tried to discuss this letter with my local hospital consultant. At the time I was devastated by the duplicity. Why be one thing to a patient’s face and yet treat them so appallingly behind their back? It reeks of arrogance, that they feel they are a breed apart from their patients.

 

Firstly I learnt I have a fibroid on the anterior wall of my uterus. When I attended the hospital for my trans-vaginal ultra sound in 2015, I was told during the appointment I had an ovarian cyst of around 2cm in size on my right ovary. I was also told that this wouldn’t be monitored as it was under 4cm. At no point was I told I had a fibroid, this was complete news to me.  I was shocked that at no point had anyone suggested that I the patient be given a copy of the report after the ultrasound. Ok it’s not a huge fibroid but surely I had the right to know? Especially when there is no mention of an ovarian cyst.

 

In the same year I had a lot of bloods drawn one of the blood tests performed was a cortisol level. It was taken at 1015am in the morning when cortisol levels would be beginning to slowly drop away naturally. However my cortisol level was 107, as you can see from this abstract – https://www.ncbi.nlm.nih.gov/pubmed/12636203 a level of less that 110nmol/L shows that the patient has adrenal insufficiency. This has the potential to be life threatening as it could indicate I have Addison’s disease. Yet nothing at all has been done about this result. The hospital consultant that wrote to my gp said that he would be admitting me into hospital for further testing. It never happened. What annoyed me more was this was the doctor who accused me of spending too much time on the internet looking up syndromes to have…..yet my blood tests he reluctantly performed showed massively raised prolactin levels and this cortisol level of 107. I’ve had low cortisol before and had further tests in 2010  however my results then were not as low as they were in 2015. So now I will copy the letter and go and see my gp to point out I had low cortisol levels three years ago and possibly it would be a good idea to get it tested again?

 

The winner of best work of fiction – letter from a consultant goes to an arsehole I had to travel nearly 200 miles to see. When I met this tit I knew he was going to be of zero use, especially when as an EDS expert he told me that Ehlers Danlos Syndrome didn’t cause CSF Leaks. When you sat across from someone who is supposed to be an expert in their field and you know more than they do on a subject, that’s the time to start worrying. Hubby and I should have left at this point – research shows that 90% ( it could be 80%) of people with a spontaneous spinal fluid leak have a connective tissue disorder, of which EDS is one. So for this expert to sit across the room and tell me that EDS doesn’t cause spontaneous leaks, either meant he was ignorant of the connection between the two – not a good look for an expert or he was just a massive bellend. The choice is yours.

 

My CSF leak was diagnosed by a neurologist who has published papers on CSF leaks, you know an actual expert on the condition. However this doctor states in his letter to my gp that I don’t have a CSF leak and my headache is being caused by PoTs. This is the doctor that doesn’t believe that EDS causes spontaneous leaks and now is telling my gp he knows more than an expert in the field of spinal fluid leaks. The sheer arrogance of the doctor took my breath away, I was absolutely fizzing with rage and used lots of language that I wouldn’t wrote in this blog.

 

However there was even better to come, he wrote that I told him I used a wheelchair due to my headache…….yep read that again……I told him I used my wheelchair because of my headache…… I just laughed at that one. My doctors know I use a wheelchair for two main reasons 1) I get drop attacks where I will semi lose consciousness as I walk along, with no warning. This was the main reason why I had to stop walking my dogs unaccompanied as I had no clue as to where or when I would pass out. I could be mid-sentence and I would hit the deck. 2) I also use my wheelchair because of the various issues I have with my spine and other joints. Walking causes me intense pain, bursitis will flare up in both my hips, I get plantar fasciitis in both feet. Walking any kind of distance is just too painful. I can categorically state that I NEVER SAID I used a wheelchair because of my CSF leak. Because when I started using a wheelchair in 2008 I didn’t have a csf leak. I started using my chair to prevent head injuries from my drop attacks and to allow me to get out and go further than just walking would allow.

 

Now if that had been all the lies / mistruths he had told then I could possibly live with that but his letter was just one lie after another. He claimed I was resistant to coming off opioids despite the fact they don’t work on my pain. His main concern during the whole appointment was to get me off opiates but could offer me nothing in return to kill the pain. I have never said opiates don’t work, I wouldn’t bother taking them if they didn’t work. Opiates were the only medication that reduced my pain enough for me to be able to get out of bed after being bed bound through pain for 12 weeks. Thankfully the gp who this letter went to was the doctor who prescribed me morphine and when I discussed this attitude of the consultant that I had to come off morphine, my gp said no way, there is nothing to give you as an alternate. He said I saw what you were like before morphine, I couldn’t do that to you.

 

Oh and there is more that this cockwomble of a doctor wrote, he said I was resistant like most EDS patients to getting better………………….I’ll let that sink in. Someone at this National Unit thinks that EDS patients don’t want to get better. Now it really doesn’t surprise me as this hospital also uses the Lightning Treatment on pediatric patients with M.E. If they are arrogant enough to believe that they can cure M.E using this bogus treatment no wonder they believe ( or should I say this one doctor believes) that EDS patients can think themselves better.

 

All the doctors that have ever treated me have said what a positive mental attitude I have towards my medical conditions. That I persevere no matter how hard things get. That I can still laugh and make fun of myself when things are truly awful. So to declare in this letter that I was resistant to getting better from a genetic medical condition that has no cure is simply laughable. No wonder the hospital consultant that referred me to this hospital said he wouldn’t waste the hospital trusts money again sending any future patients there.  He couldn’t apologise enough and at that stage he knew I hadn’t seen the gp’s version of the letter, he probably thought I never would.

I would suggest to all patients that they ask for all copies of their consultants letters going back three years. Some surgeries will charge you a fee for this, i was very lucky and didn’t get charged even though I was expecting it. You will have to fill out a load of information as to why you want the information and you’ll need to provide a form of ID. They can refuse to give you these letters using the get out clause of it being detrimental to your mental health. Using the same get out of jail free card they can omit some letters from what they give you. If you have complex health issues it is essential that you have these letters and read them. If you find that tests haven’t been chased up or performed you can advocate for yourself. When you have lots of conditions / consultants it is very easy for things to get lost or lose their priority. At least this way you can be an extra set of eyes and see if things have been missed and bring them up with your consultants or your gp.

 

 

 

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).