Having read through my postings I have realised I never told you what happened after August 2007.
I saw a GP at the local practice and took some ice with me. I performed the test in front of her and showed her it raised my eye lid and eyebrow back to its normal position. On showing her this she prescribed me Neostigmine Bromide ( a generic drug and obviously cheaper than the standard issue Mestinon) and referred me to Dr X.
The Neostigmine Bromide took 5 days to track down, due to the fact hardly anybody uses it for MG. The pharmacy dispensed it and gave me no patient information leaflet. I used it for the first time and within 20 minutes my eye opened and stayed open for 4 hours. It was amazing, my colleagues couldn’t believe what they were seeing. I still felt incredibly weak, but I could actually see for the first time in 8 months.
Unfortunately the neostigmine bromide really didn’t agree with me. The side effects started on the 2nd day of taking it. My stomach felt like it was full of wind and was quite bloated and uncomfortable. By day three I was drooling like a dog. I had stomach pain that can only be compared with bowel adhesions, the pain was making me scream out loud. Then the worse thing started, I was vomitting and couldn’t stop. I was in such a state my husband drove me to the local casualty unit, where I was rushed straight in. The local unit is attached to the drs surgery so an urgent call was put out for the Dr to attend. 2 hours later the Dr turned up. Unfortuantely it was the one who my mother had called a wanker! The curtins were drawn around my bed so he didn’t know where I was in the unit. I was right beside the nurses station.
The nurse said to him ” its a patient with occular myasthenia, having a reaction to medication”
The GP responded “she doesn’t have myasthenia, we dont even know if the medication works”
Nurse “It works alright, her eye was open when she came in now the dose has worn off her eye has closed. Oh and by the way she can hear every word your saying”
With that the curtains were wipped back and a red faced GP was stood there.
“The medication works then?
Not a dynamic conversation I agree, but quite funny as if it was depression I wouldn’t have responded to it. He doesn’t apologise for the two hour delay but instead tells me not to take the neostigmine bromide and to see my GP. Well that was worth waiting for.
I saw the GP was prescribed Mestinon and Probanthine to counter act the effect of the mestinon. Unfortunately mestinon or neostigmine bromide, dont discriminate between what muscles need help and which dont. It stimulates the sympathetic nervous system – which means it stimulates Salivation( drooling), Lacrimation (tears), Urination (makes you wee more) and best of all Defecation (poo). The Probanthine would hopefully reduce these symptoms.( it doesn’t and I need to take loperimide to stop the violent stomach cramps and excessive pooing)
I get my appointment through to see Dr X in October 2007. He concurs that it is Occular MG, despite me telling him that I am weak all over this is ignored.
MG is broken up into many groups but basically there are two main groups Occular MG (effects the eyes only) and Generalised MG (effects the whole body). The MGA a charity in great Britain which aims to educate Drs says that Occular MG should not be diagnosed until two years have passed after initial diagnosis. MG often shows its first symptoms in the eyes with double vision or Ptosis, however the majority of patients will then go on to develop more symptoms in the following two years after the initial diagnosis. I had only started proper symptoms from the January, so it was far too early to say it was occular MG.
Alarm bells should have been ringing for me at this point as Dr X was supposed to be the local MG expert, but seemed not to know this piece of information. I myself didn’t know this until much later, but at this point I was happy just having a diagnosis.
I saw Dr X again in January 2008, I’d had a chest CT to check for a thyoma which was negative. I’d had the standard blood tests repeated and again they came back negative. At this point Dr X was happy to state I had occular MG. However I was getting weaker. I struggled to dry my hair with a hairdryer, I could no longer change a duvet cover, I was falling over as my sight was being effected. I was suffering with shortness of breath. I told Dr X all this and he told me to reduce my working hours and that I should continue taking the mestinon. I was unhappy, but at this point I still trusted him. It wouldn’t be until much later that I would realise that the majority of patients with Occular MG find mestinon alone doesn’t stop their visual symptoms they need steroids such as prenisolone to help them live a normal life.
Work was a constant battle. I was exhausted, frightened and alone. I struggled daily with fatigue and other peoples ignorance. I felt like I was drowning and the more I asked for help the further away the life buoy was being moved.
On 31st May 2008 I came home from work and could barely move. By the following day I couldn’t get out of bed and by the afternoon I was in an ambulance on my way to hospital.
Thats how quickly it happened. I truly believe that this all could have been avoided if my local MG expert Dr X had listened to me or had even known how to treat MG. I probably would have had to reduce my working hours but I would have been stable and I would have been able to lead a fulfilling and productive life.
In June 2008 I was put on steroids. Initially I responded very well but it didn’t last. By October 2008 I was virtually housebound and using a wheel chair to get out and about. Dr X perplexed by this situation referred me to the Oxford clinic.
I was so full of hope when I went to the Oxford clinic. They were the experts and would know what to do to get me better. How wrong I was. Dr X had told me he was sending me there for them to come up with ideas for medication. That was a blatant lie, I was told as soon as I got there I had been sent as he no longer believed that I had MG. It was pretty clear from the outset that Dr Z at the clinic had made up his/her mind before I got there. Within 10 minutes of examining me he/she declared I was suffering from stress and ME.
To say my world fell apart that day would be a mild understatement. I was in the process of being ill health retired from my job and now the steroids that had initially helped me were to be stopped. I knew that I was going to get a lot worse before they realised their mistake and I knew it was going to get dangerous. No one in the medical profession seemed to be able to understand that fact.
I left the Oxford clinic broken and despondent. What the hell was going to happen to me now?