Warning shot

This last week has been a tad crazy. By “normal” people’s standards it’s a very light week, especially when you consider there was no full-time or even part-time work involved. My body is still playing catch up and my mind despite it being ten years on (since becoming sick) is struggling to come to terms with the fact that I can’t just do stuff like a normal non chronically sick person would.

 

There have been various things that have needed doing around the house for an absolute age, actually just months rather than years but the week before I had got to the point of no longer being able to put up with these jobs not being completed. Our tumble dryer (condenser) had developed a leak and now was having the habit of tripping out the electrics after it had been used. It had been unplugged and unused for the summer however we hit September and all it seemed to do was rain. I don’t mind drying the day-to-day washing on an airer in the house if it’s not possible to dry it outside but towels and sheets are another story. I bite the bullet and arranged for an engineer to visit. He would be coming on Tuesday which was also hubbys day off.

 

Two weeks prior I had arranged with my hairdresser to come over on Wednesday 6th to sort my hair out. It needed a full head of highlights as my greys were starting to show or fairy glitter strands as I like to call them. Plus I couldn’t do a thing with it, so it needed a good cut as well.

 

In January this year we had a leak behind a plasterboard, it was all sorted and settled. We decided that we would sort out getting the repairs done ourselves and then redecorate at our own pace. Hubby had been given the job of sorting out the plasterer. I had simply refused to be the responsible adult all the time just because I was at home and don’t work. It’s not just that, hubby also has a bit of a phobia about contacting people he doesn’t know (in his home world, in the world of work it’s not a problem), so he avoids it at all costs rather than confronting his fear. I was practicing some tough love but after 8 months I had to admit defeat. If I didn’t want to put tinsel around the holes in the plasterboard at Christmas I was going to have to sort it out myself. Luckily on a local community group on social media someone asked for a recommendation for a plasterer. Two names were mentioned I contacted both, arranged for them to come over and have a look at the job / give me a quote. The one I chose was available the following Thursday (7th).

 

I knew as I looked at the week ahead it was going to be tiring but I just assumed that I would bounce back after a good night’s sleep and be fine for the following day’s  activity. What an idiot I was. I am still trying to recover from last week. I have suffered with fatigue before but the levels of fatigue I am suffering with at the moment make me feel on a pretty regular basis that I am having an out-of-body experience.

 

Tuesday wasn’t too bad other than it was embarrassing. The cause of the leak in the tumble dryer was that the water collection point at the very back of the machine not accessible to mere mortals like you or I was completely choked up with dog hair. When an engineer tells you that’s the worst they’ve ever seen one blocked up, you want the ground to swallow you whole. The tumble dryer is cleaned regularly, the filter is cleaned after every load that is dried. The condenser unit is washed through once a week and it is hoovered inside at least once a month but even doing all that wasn’t enough to stop it getting overrun with dog hair! Remember we have three so maybe that is why? That cost us £50 for about 5 minutes work but it needed to be done.

 

That night I used the tumble dryer on one load. I really wished I hadn’t as once I had gone to bed as I spent the night panicking that it would have knocked the electric out in that part of the kitchen which unfortunately the fridge freezer is in. A few times before the tumble dryer had been fixed I had come down in the middle of the night to find that the fridge freezer had no power being supplied to it. What had been happening was the automatic safety cut off for the tumble dryer had been triggered which was then knocking out the fuse but not in the main fuse box. Wednesday morning I was absolutely exhausted from having very little sleep. And of course the Fridge-Freezer was absolutely fine.

 

My hair took three hours and by the time it was finished all I wanted to do was go to bed and rest, which is exactly what I did. I could barely sit or stand as my back was so painful from sitting upright for so long. My hairdresser did a fantastic job and she said my hair has come back lovely and thick after it thinning due to my hormones being out of whack. I am much happier with how it looks and I am so glad I can get it done at home without the added stimulation of the lights / noise / people at a salon. I thought going to bed for the rest of the day would be enough for me to bounce back for Thursday and the plasterer being here. No it wasn’t.

 

Thursday was an early start, I’d had to set my alarm as I knew with being so exhausted I would want to sleep on. That luxury wasn’t available to me when the plasterer had said he would be here for 9am. I had assumed that the job which was to skim a wall and fix two holes in the plasterboard would take a couple of hours, after all it wasn’t a whole room. Jay would be at work so I would have to ensure the dogs behaved and were out of the guys way. We installed a free-standing baby gate at the bottom of the stairs so that the dogs wouldn’t bother him whilst he worked. Normally the dogs are pretty good when there is someone working in the house, after the initial excitement they tend to just settle down and go to sleep. Not last Thursday they decided that they would bark and generally make a nuisance of themselves. I did managed to keep them occupied by stuffing Kongs with peanut butter and bread. Eventually they did just flake out and go to sleep but not until after a stressful first few hours.

 

The plastering took over 5 hours and by the time he left I was on my knees with exhaustion. I could barely function at all I was so tired. Again I thought with a good night’s sleep and I would be ok. I would have a lazy day Friday and everything would be fine. In the old days when I first got sick and possibly up until last year that would have been the case. However for some reason this year it has all changed and it’s taking me much longer to recover and smaller things are causing major recuperations. It is very frustrating as my brain is refusing to acknowledge this. Friday I just felt drunk or extremely hung over all day. I couldn’t watch TV or listen to the radio as I just couldn’t follow what was going on.  I did as little as possible Friday and Saturday I just slept on and off all afternoon. I had hoped by Sunday that I would have turned the corner but after a short visit from my parents in the early afternoon I just crashed and ended up in bed for a few hours.

 

This week is a quiet week, I had a friend visit Monday which was good as it forced me to behave and do nothing. Tuesday hubby was day off so he did the cleaning and any household chores that needed doing. My head is still giving me lists of things it insists I must do but my body is saying no. I had hoped I would be ok this week so I could potter around and get a few jobs done before Mr Myasthenia Kids holiday next week but it’s just not going to happen. Mestinon / Pyridostigmine Bromide is only lasting 3-3.5 hours instead of the 4-6 it had been lasting previously, this is a warning shot to let me know I can’t keep pushing myself and expect no consequences. Hopefully the next 6 and a bit weeks are going to be very quiet before we go on an adventure to the Emma Bridgewater Pottery factory as a birthday treat.

 

 

Advertisements

Clutching at Straws

The letter I had been dreading the arrival of turned up on Saturday. I had almost begun to believe that such was the inflammatory nature of it contents that, I had been denied a copy on the grounds it would be perilous to my mental state. The letter was from the neurologist I saw at the end of July. It’s contents were only slightly better than anticipated.

 

I had believed that the letter would suggest CBT or a visit to see a neuropsychiatrist. It wouldn’t be the first time it had been suggested due to my obscure symptoms and the belief on the various neurologists part that because they didn’t know the answer my symptoms were psychological rather than physiological.

 

I have now been diagnosed with Hemifacial spasm of unclear cause. Now for those of you who don’t know what a Hemifacial spasm is, it’s basically a muscle spasm in your face. Having done a little digging around on the internet I have found out that Hemifacial spasm can be due to Dystonia, MS, Compression of a facial nerve, lesion on the brain stem, brain tumour or of unknown cause. It is also an incredibly rare condition with Patient Info (https://patient.info/health/hemifacial-spasm-leaflet) stating that it affects 4,000 in the UK.

 

The only problem with this diagnosis is that this never started out with the twitching that is described by every website I have read over the weekend. Google Hemifacial spasm and one of the first things you will read is muscle twitching.  Of course I have had muscle twitches but they have never been so bad that I have sought medical advice for them. This spasm / ptosis / condition came on overnight. Also it is the right side of my face that is affected, where this condition mainly affects the left side of the face. Hemifacial spasm is not treated by the use of mestinon so this diagnosis ignores the response I have to this medication. So it’s the usual horse shit that I have got very used to over the last ten years.

It’s not the first time I have heard of someone with ptosis being told that they have Hemifacial spasm. I can remember years ago on a forum a woman in the UK being told the same thing, despite mestinon resolving her ptosis and her not having muscle twitches. It seems this must be the go to diagnosis when they can’t admit they don’t know or if all signs are pointing to MG.

 

Apparently according to the letter “On observation of the facial problem today although there was some flattening around the corner of the mouth, the predominant problem is in fact of eye closure on the right hand side rather than ptosis, ie there is a contraction of the orbicularis oculi muscle rather than a weakness of the levator palpebrae superioris. The remainder of the facial movements were at times a little limited….” All this without actually doing a neurological exam, assessing the strength of my eyelid closure etc? *Sarcasm*

 

All the medical papers I have read so far in a limited time period have said about the corner of the mouth being pulled up by the muscle spasm in Hemifacial spasms. That doesn’t happen with my mouth, the corner of my mouth droops. I have in the past had muscle spasms where the side of my mouth has pulled back but it’s not lifted up or dropped down. It also prevented me from opening my mouth and I ended up with a NG tube in for a few hours.

 

I am a little sceptical at this latest diagnosis, as you have probably guessed because it really doesn’t fit properly. There are aspects of it that do fit like the muscle spasms I deal with on a daily basis in my back, hips and feet, if the diagnosis was generalised Dystonia, which can run alongside EDS. However my ptosis never resolves with heat, which if it was a muscle spasm you’d think the heat would be enough to relax the muscles? The only thing that resolves the ptosis is rest, ice or mestinon (pyridostigmine bromide).

 

However the doctor did pay me a massive compliment by knocking ten years of my age! In the opening sentence it says I met this 33-year-old lady…. Happy days or they were simply getting confused with the notes from ten years ago.

 

What really irritated me was that this doctor has claimed that there is nothing wrong with the muscles in my face, the nerves or the neuromuscular junction yet Hemifacial spasms are a neuromuscular disorder. Also according to https://www.bcm.edu/healthcare/care-centers/parkinsons/conditions/hemifacial-spasm website my EMG wouldn’t have been normal if I had Hemifacial spasm “ It will show irregular, brief high-frequency burses (150-400Hz) of motor unit potentials”.   When I found this out I roared with laughter, so apparently I can’t have MG because my EMG was normal but I can have Hemifacial Spasm with a normal EMG despite the fact it should show abnormalities. Welcome to the world of neurology where we change the rules of diagnosis depending on the condition.

 

The consultant has recommended I be treated with Botox to relieve the muscle spasms. However one of the side effects is developing Ptosis………………………I know you couldn’t make this shit up could you? Also Botox is contraindicated with MG. So would I really want to risk a Botox injection for a condition it seems highly likely I do not have.

 

There is nothing worse than a doctor clutching at straws, especially in this day an age where a patient can debunk their diagnosis in a matter of minutes. I truly believe that this is what has happened here, they know they can’t get away with saying there is nothing wrong with me so come up with this drivel. I am embarrassed for them.

Other links for information on Hemifacial Spasm

https://en.wikipedia.org/wiki/Hemifacial_spasm

http://www.empowher.com/hemifacial-spasm/content/hemifacial-spasm-uncontrollable-muscle-contraction-face

http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/hemifacial-spasm

The last 7 days / my life in photos

As it was the August Bank Holiday weekend here, Mr Myasthenia kid had three days off in a row, so we have been spending the time together. It also meant that there wasn’t time to spend writing a blog post, so I thought I would do something different this week and which follows on from last week’s blog post a little.

I have decided to share the photos I took over the last week. Where I can provide a little commentary.

Wednesday 23rd August 2017

I accompanied hubby in the car when he took the dogs out for their last walk. Whilst he walked them I amused myself taking photos. I took a couple of the single track road as I liked the way the clouds were looking and how empty the road was.

Amazingly the herd of cattle wandered into view. I have been wanting to take photographs of this herd for months. We have been watching the two calves grow on every visit to the common. Unfortunately every time we came up until now they had been in a location with very poor light, too far away from us or we couldn’t see them at all. I was overjoyed that I now finally had some photos of them.


The big bull wasn’t too happy I was in his face taking photographs. I could feel his breath on me and the longer I was there, the less sturdy the fence felt!

This girl was beautiful but she never got very close to me so this was the best shot I could manage.


I also managed to get a photo of the two calves.


Thursday 24th August

I came upstairs and found Frankie sleeping on my bed. He looked so cute I had to get a photo

Friday 25th August

I didn’t take any photos, I spent a lot of the day organising stuff for a day trip at the end of October. I also had to wait around for a delivery, which didn’t turn up until late. So I spent the afternoon lying on the sofa.

Saturday 26th August

My “Rachel” hybrid tea rose has got blooms five and six on it with number 7 in bud.

In the evening I managed to take two shots of the Common again whilst hubby walked the dogs.

Sunday 27th August

I don’t really need to explain this one!

Making a curry for dinner, with Mr Myasthenia kid helping.

After the dogs afternoon walk, the all decided to cram themselves onto the rug in the lounge, something they never do.

 

Monday 28th August

I can’t look at this photo without smiling / chuckling. It was one of those photos that just presents itself. I was waiting for Jay to get back from the shops, whilst reading the newspaper online. Willow had taken up her usual on guard position of lying on the back of the sofa / on the edge of the window ledge. As it was a sunny day I had closed the curtains as the sun’s reflection was bouncing off everything. I looked over my shoulder and saw Willows nose poking out from underneath the curtain. I was amazed she didn’t move which is what normally happens when I try to take a photo of her.

Tuesday 29th August

My “Rachel” hybrid tea rose again, as the flowers have fully opened. Hubby and I keep saying how the flower on the right of the photo looks like a double flower. The smell is magnificent.


I managed to pick up two books by Emma Bridgewater second-hand from Amazon. I wanted the hardback copies as, I have in the past when I have bought paperback copies of books with photographs in found it highly annoying that all the photo’s are in the centre of the book completely out of context. At least this way the photos are relevant to the text.

On 25th August (Friday) a friend who is the manager at a local charity shop messaged me to let me know she had a piece of Emma Bridgewater come into the shop and did we want it. So on Tuesday Jay went to pick it up. It is a dinky fluted bowl which I have since found out was part of a Walkers Crisps promotion last year. It’s a little bowl for dips. I have been collecting Emma Bridgewater for a few years but I didn’t seriously start collecting until the very end of last year, before that I had about 15 mugs. I dread to think how much I have now.

So that was the last 7 days in photos, just something a little different this week.

 

Doubt

It is a horrible situation to be in when you lose faith and start to doubt yourself. I know so many people with chronic health conditions who have felt the same way due to the way one idiot doctor has made them feel. When you aren’t believed, your symptoms are minimised or you’re told there is nothing wrong despite the fact your body is screaming at you that there is something very wrong, you can lose faith in your ability to be objective. You can start to let that seed of doubt lay down roots. Those roots do a number on you and you can start thinking that you are a hypochondriac / there’s nothing wrong / you need psychological help. Despite trying to remain strong after that awful appointment nearly three weeks ago now, seeds of doubt had entered my mind.

 

I know how ridiculous that sounds. I know that there is something wrong with me, I know that despite the doctor claiming that there was nothing wrong – despite not actually examining me and looking at what was in front of them. It has been niggling away at me, I have been doubting my symptoms and that is a dangerous position to get into as it messes with your mental health and it makes you play fast and loose with your physical symptoms. The last three weeks I have been having an internal dialogue all about the appointment and what I could have said and done differently, even though I know that the decision had been made before I even entered the hospital.

 

I have also found myself doubting that I still have ptosis, although no magic wand has been waved to make it disappear. So much so that one morning when I could feel it coming on, I deliberately waited to see what would happen before I took mestinon. I had almost convinced myself that since the neurologist believed that there was nothing wrong and could provide no explanation as to what was wrong, then my ptosis would simply disappear. However I was soon persuaded that this was absolute rubbish when it took a good hour to get rid of this when it happened just after I’d had a shower.

 

But what if I had been having breathing problems and I convinced myself that there was indeed nothing wrong with me? What if I had ignored all the signs that were pointing to the fact I was having a MG crisis? I could have died purely because I had believed the word of a neurologist who didn’t even show me the courtesy of examining me.

 

The appointment has made me really angry, not only because the neurologist had a closed off mind and had decided before they had met me that I didn’t have MG, but because it brought up all those feelings of doubt that I had ten years ago. It has really shaken my confidence, I am doubting and second guessing everything. I have become quite withdrawn and I am spending a lot of time in my head. All due to one stupid appointment that didn’t last more than 30 minutes. Do the doctors that treat patients like this realise what they do to us? Or do they not even care because we aren’t their problem?

 

I am lucky I am strong enough to know what is going on, that my mind will be all over the place for a couple of weeks whilst I process all of this. I have good people around me who lift me up when something like this happens. I’m also savvy enough to know that I am the only person that can break me out of this funk and that it is vital that everyday I do something I enjoy and that I am good at. Even if my self-confidence has been shattered it is important to get up every day and try.

 

What I really love to do when I am in a funk due to an appointment / doctor / life in general is get creative. I have loved taking photographs for years. I really enjoyed doing a six-week photography course when I was at university. The older I have got the more I have understood about lighting, composition etc. I know the best room in the house for taking photos in natural light is the kitchen, if I take photos in the lounge I am left with artificial looking colours due to the flash going off, or sunlight bouncing off surfaces causing glare. The only camera I use is the one on my phone ( I can’t wait to upgrade as I didn’t get enough memory on this one), I use the filters on Instagram but I wouldn’t know how to Photoshop unless someone sat me down and gave me very basic instructions on what I am doing. Taking photos and getting feedback is something I love and it boosts my confidence. Especially when someone famous likes your photo (or several of them) or when Emma Bridgewater’s social media team contacts you and says they’d like to use your photo. That has happened to me 6 or 7 times now and I have only been posting photos of my Emma Bridgewater stuff since January. So I am pretty pleased.

 

I am an amateur when it comes to photography but I really find it relaxing and the positive affirmation I get through Instagram has lifted my mood. You can find me here.

Here are some of the recent shots I have taken if you don’t use Instagram


 

When my head is full of doubt I know that taking photographs or looking at other people’s work brings me a sense of calm.

I quit……..smoking

Mr Myasthenia Kid has managed to pass on his sickness bug to me. He ended up coming home from work on Monday after vomiting twice. He spent the rest of Monday sleeping. I spent last night going from freezing cold to boiling hot, my hair is crazy this morning. I am also horrendously nauseous. So today’s offering will be short and sweet.

 

On 6th August I packed in smoking tobacco, over the previous couple of months I had slowly been falling out of love with it. It no longer tasted the same, smelt the same, I was smoking more but enjoying less and less. Because I rolled my own cigarettes I was also getting stained fingers which meant several times a week I was having to bleach them to get rid of the tar stains. I knew the time was approaching where I was going to give up. I just didn’t know if I would be able to do it.

 

At the same time as I was falling out of love with cigarettes, a friend of mine had given up smoking. Something I never thought in a million years would happen. She had bought a vape and literally swapped over from smoking 20 plus a day to none and solely using the vape in a few days. She brought the vape over to show me and a week later I bought myself one. With the intention of slowly reducing the amount of cigarettes I was smoking and using the vape.

 

I really struggled to get on with the vape, for some reason every time I inhaled I coughed my lungs up. I don’t know what was causing the problem but it was infuriating, why could I inhale cigarette smoke and not inhale from a vape. It took a few days of persevering but I got the hang of it. I was coming to the end of my tobacco and after the first cigarette of the morning on Sunday 6th August I decided that was it. I had enough tobacco for one cigarette but I just put it away in the cupboard. I haven’t smoked since.

 

A few days after stopping smoking I threw my tobacco tin away, bagged up the papers and filter tips which I bought in bulk and removed the ash trays from the house. We only ever smoked in the kitchen, but the difference in the surfaces keeping clean without me facing a losing battle daily against bits of ash and tobacco was enough to convince me, it was over. Jay took my papers and filter tips into work and gave them to my friends that smoke.

 

Giving up and switching to the vape has been easy, far easier than I thought it would be. I much prefer it to smoking. Over the last few days I have found that I am using it a lot less than I was initially. I did experience some problems with my blood pressure being quite low for a few days whilst my body sorted itself out. I gave myself a week for it to settle and if it hadn’t I would add a nicotine liquid to my vape to boost my blood pressure. Thankfully the giddiness and feelings of pre-syncope reduced and I managed to not use nicotine liquid.The other issue I have had is really painful sinuses.

 

I’ve had sinus problems for years. I regularly use a nasal spray as the inside of my nose gets inflamed and causes problems with my eustachian tubes swelling shut. Since stopping smoking I have been in a lot of pain with my sinuses, at some points it has been going into my teeth. I have no idea why giving up smoking would make it worse when I have always been told that it would make it better. It’s still hurting today but it is getting less as the days go on. I am hoping that this will eventually settle down.

 

I know that I will never be able to take for granted that I no longer smoke. I have stopped for years in the past only to start again. I will need to be constantly vigilant and be honest with myself that whenever I want a cigarette it is the addiction talking. So far it has been much easier than I ever anticipated it would be, I hope it stays that way.

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

* * *

 

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

Stressed

This week has been fraught with activity, on the day last week’s blog post was published I had a telephone call offering me an appointment this Friday for nerve conduction studies and to see the neurologist who specialises in movement disorders. Stressful doesn’t seem to cover it. Even though I have been through all of this before, on numerous occasions it never gets any easier.

 

This isn’t my first rodeo where MG (myasthenia gravis) is concerned. I have had at least 4 nerve conduction studies previously, all came back negative. I will be honest, I really don’t hold out any hope for this one being any different. I have seen several neurologists who on first sight are utterly convinced that I have Myasthenia Gravis but when the tests all come back negative, shrug their shoulders and look no further. I have demonstrated my positive reaction to the ice pack test on more occasions than I have fingers. Yet with all the other tests coming back negative it is ignored despite the fact it conclusively shows I have an issue at the neuromuscular junction.

 

The fact that I respond to mestinon (pyridostigmine bromide) is also ignored once the tests come back negative. With one doctor suggesting it was merely the placebo effect. It is difficult to feel positive about hospital appointments when you know that you will be ignored if the tests don’t come back with a positive result. There is also the danger that you will be labeled with a having a psychological illness such as somatization disorder and all the medical care you currently have will disappear. The stakes are high, I know how much I stand to lose.

 

I have spent the last week slowly working through my pre-hospital appointment checklist. As I am seeing two different departments on Friday, I need to have two sets of prescription medication lists and the medication allergy list (as there are quite a few that will provoke a nasty reaction). These both needed updated as some of the medication I take is not on my repeat prescription list, some of it on the repeats list I haven’t taken for over a year and I have developed more allergies since last year. At the same time I have put together an Emergency envelope that will sit by the front door. This contains my latest hospital letters (copies of), lists of medication allergies, prescribed medication list and contact numbers for next of kin. I think if you have a chronic illness that may require an emergency hospital admission it is good to have an envelope or file with your relevant medical information in. In an emergency blind panic can set in and you can forget stuff. This way all that I have to do or hubby has to do is handover an envelope and the paramedics have everything pertinent to hand. Plus as my health care is overseen by two different hospitals in two different areas, the electronic notes don’t link up.

 

I tend to also carry a copy of  the list my prescription medications and medication allergies in my purse, along with a short list of my medical conditions when I leave the house. So that should anything happen car accident, faint etc I have all the information to hand. I know it sounds over prepared but I am horribly allergic to CT contrast dye, I really wouldn’t want to be injected with the stuff unless it was absolutely necessary.

 

I have lost count of the number of times I have read and re-read the appointment letters from the hospital, my memory is shocking, I wanted to ensure that I have all the correct information with me and that I know where I am supposed to be going. Also with the nerve conduction studies they have asked that I don’t use body lotion etc before the tests as it can interfere with them.

 

I would normally wear make up for a hospital appointment, so that they can’t toss me into the “depressed” file, I also try to avoid wearing black again to avoid being written off as depressed. Yes they really do use what colour clothes you are wearing and if you are wearing makeup to suggest that you are depressed (if you are a woman). I always ensure if I am wearing black (even if it’s just a top or a pair of trousers) I have bright colours somewhere on my outfit. So a great deal of thought has had to go into my hospital outfit, as the neurophysiology appointment asks that you wear a top that can be rolled up above the elbows and with trousers that they can be rolled up above the knee. I need to also add in something that is comfortable and preferably with layers, I have so many problems regulating my temperature, where I can go from cold to way too hot in a matter of seconds, so layers for me are essential.

 

Then comes personal grooming, something that can fall by the wayside when you feel like shit! I think the last time my legs saw a razor was the end of June, for my last hospital appointment. I am lucky I am not very hairy and it is slow-growing so I can get away with it for the most part. However despite being sick I am incredibly vain and would die of embarrassment should I need to roll up my trouser leg for the nerve conduction studies only to reveal really hairy legs!

 

I have also included two photographs in my hospital paperwork of my ptosis should sods law strike and I don’t get it that day. It is usually the case when you have a fluctuating condition that it is never at it’s worst when you see the hospital consultant. Over the years I have learnt the hard way, so now I take evidence with me. So if I am complaining of lower than normal blood pressure I take my omron BP monitor with me as it stores the readings. Now with ptosis I take good clear photographs that I have downloaded from my phone. That way it can’t be disputed that it happens. It does pay to be organised as if you are like me, you can get a little flustered when seeing a new doctor. Knowing that I have prepared in advance helps keep me slightly calmer.

 

I’m still debating on whether or not to take a freezer block with me, in case I should need to demonstrate the ice pack test for the neurologist. I have a nice small cool bag in which to keep it cold, it’s just a case of whether I should or not. In the neurologists letter they have advised me not to take pyridostigmine bromide before the nerve conduction studies but to take it when I have finished the tests. Again I am wondering if I should wait until I am actually in front of the neurologist to take it, so that they can see the extent of my ptosis and muscle weakness. At the moment I think I shall take the meds with me but not take them until after both appointments. What’s the point in assessing my muscle weakness if I have taken a medication that will improve my muscle strength?

 

You can probably tell I am a little wound up about this up and coming appointment. It is already affecting my sleep, as I am waking up at all hours and the immediate thing on my mind is this appointment. So much hangs in the balance. I am honestly not bothered if its MG or not, I just want to know why I am having ptosis / muscle weakness and what can be done about it. Over the last ten years all I have wanted are answers, which I don’t think is too much to ask?