to anyone who reads this page. I haven't done a blog before so its all new to me. Well if you didn't guess I suffer from an auto immune disease called Myasthenia Gravis. I have just suffered my first crisis and Im currently off sick from work. I thought I would use the time constructively and try and spread the word about the condition so that no one else has to go through the last 17 months that I have.
In January 2007 I suffered the worst migraine I have ever had. The symptoms much more powerful than anything I had experienced before. The next day I was headache free but I had a small patch of tingling skin just underneath my right eye. The next day this patch had increased to cover down past my cheek bone. I felt utterly weak and exhausted. The next day the tingling was down to my chin. I felt terribly unwell, weak and exhausted. Over the week, as the migraine was on a Friday I saw 5 different doctors. One told me....who is a complete muppet and nearly killed me on 3rd June 2008, when i had a crisis, that it was my migraine
and I would be better by the following Friday. Others took the approach that I had Bells Palsy, although my face wasn't drooping.
However after returning home from work on Thursday 11th January 2007 my eye closed and my vision was some what distorted. I went to accident and emergency as the doctors surgery was closed. I was perscribed Prednisolone 8 tablets a day. Now having read quite a bit more than before I realise that this muppet could have killed me also. Prednisolone should only be introduced slowly in a patient with MG other wise it can exacerbate the symptoms. however give him his due i was presenting as a classic bells palsy case rather than an MG case.
I spent a bit of time on the internet, but I was weak and exhuasted and I couldn't see clearly. I visited the Dr religiously to be told that my face could look like this for up to two years and to get on with my life. I asked for a referral to a consultant and was sent to an ear nose and throat specialist. I paid the handsome sum of £250 to be misdaignosed with Bells Palsy- but also a typical Bells Palsy it wasn't following the normal pattern. The muppet even told me I should go back to work there was no reason for me to stay at home. At this point I was sleeping around 12 hours and couldn't function normally. I would have a shower and my legs would shake with fatigue, I had problems with my short term memory. I couldn't lift my arms up above my head. But hey I only had Bells Palsy what was all the fuss about. I must've been being a hypocondriact. Still just to be on the safe side that I actually may be telling the truth about my symptoms I was referred for an MRI scan on the NHS at the RDE.
I returned to work on 13th February, I met with a barrage of abuse and what can only be called Disability discrimination. When I complained to my manager I was told that if I didn't like it I could always go off sick again. This is a multi national company that is supposed to be an equal opportunities employer and has a company policy that says as much.
In March I went back to the Dr, my normal GP another muppet you will see why later in this blog. Im going to give you a history up until the present day and then add as much as I can when I can.My Gp told me that he didn't want to see me for three months unless I had something else wrong with me. I had Bells Palsy get over it and it would take two years for it to go. I left the surgery feeling a little depressed, I felt that no one was listening to me. Everyone was hung up on the idea that the Ptosis (fancy name for a droopy eye) was Bells. Despite the fact it was only my eye that was affected, no droopy mouth or saliva leakage.
My condition actually improved a little I was able to resume with some of my normal activities. I started taking the dogs out for long walks, worked overtime. Still had days where I felt like shit but my eye was opening so I didn't care. In May my sister got married, I felt extremely uncomfortable about my appearance. Since getting ill I had put on around one and a half stone. So not only was I fat but I looked like I had a stroke as well. It did wonders for my self esteem!
I also had to put up with comments from family and in laws that there wasn't anything wrong with me and it didn't look too bad. I took it well.
At the end of May beginning of June 2007 my condition deteriorated to sum up I felt like shit, my muscles shook on the slightest exertion and my eye was firmly clamped shut. My mum popped into work and saw me. I felt so dreadful I rested my head on her shoulder and sobbed. She asked me "what the fuck are you doing in work looking like that? You are going home now. Im going to get some stuff from my house and stay with you. Im taking you to the doctor." Now I remember there was a lot more expletives in there than that, but I didn't want my mum to look common which she isn't shes a lady. I should point out also that mother doesn't live near me but a good hours drive away, she had dropped my sister and her husband at the airport. So it wasn't an exactly convenient time for this to be happening.
Im going to finish now as I am having trouble siting at the computer and Im losing control of my fingers.
Love the myasthenia kid xxxx