So we fast forward to around the 20th August 2007. Its around 1800 I’m lying on the couch getting ready to go up to bed. As since January 2007 I have been crashing every night at around 7pm as I am struggling to keep myself up right in a chair. The phone rings and it my mum. She says “have you got any ice?” I said “yes we have ice.” She replies “put an ice cube on your eyebrow. Ring me back and tell me what happens.” I thought I would humour her. I know that for the last 8 months she has been spending hours on the Internet religiously tapping in my symptoms to see what disease I have. She keeps mentioning Myasthenia Gravis, in fact she has mentioned it since January 2007. However Im a little resistant to things that I haven’t heard. Im the one with the medical mind, shes the one with the menopausal one. Anyway I get the ice, I apply it to my eyebrow. The most amazing thing happens my eye opens spontaneously for the first time since January 11th 2007. It stays open for around 2 minutes once the ice is removed. I ring my mum, who is cool as a cucumber, she tells me that’s its a diagnostic test that they use in Australia for Myasthenia Gravis. Its a lot cheaper than the £1000 blood test I have just had. Im amazed scared and angry all at the same time. I have been suffering since January 2007 and my mum has diagnosed me. In fact she diagnosed me in January 2007, she confirmed her diagnosis with a bloody ice cube.
So I guess I got up to the point where my mum takes me to the GP. I feel so bad that I am crying, the GP then suggests in all seriousness the ptosis is being caused by depression. At which point my mum loses the plot just a little. She asks him without a word of a lie “are you a fucking wanker? How the hell is depression causing her eye to drop? Shes depressed because her eye has dropped and she feels like shit and you aren’t doing anything about it. We want a referral to a consultant now.” So the GP who is a little taken back by my mothers straight talking says ok I will send her to an ear nose and throat specialist. My mum is like why???” She needs to see a neurologist.” All the time I am sniggering into my handkerchief, I swear to god in all my 33 years I have never and I mean never ever seen my mum behave in this way. Shes like a lioness protecting a cub. GP agrees also gives me the test results to the MRI scan that I had a few days earlier as Im losing the ability to grip and my hands are going numb. He says the scan is clear – but my mum had to make him ring up the centre for the results as they weren’t at the surgery. You could tell the GP really wasn’t used to someone standing up to him and was only in it for the money the patients had been forgotten a long time ago. Actually this muppet had nearly killed me in 1998 by telling me I had irritable bowel syndrome when I actually had an obstructed bowel and bowel adhesion’s. But you trust them….Drs… even when they nearly kill you.
So I get referred to a consultant neurologist. I have brought eleven pages of a4 notes with me entitled the history of the mystery.. catchy! We go to the nuffield clinic, where we are late being seen. So even if you pay through the nose you don’t really get treated any better. The Dr, a lady this time has very little personality, but I have learnt that neurologists don’t really ooze warmth. She did actually listen but Im yet to understand why my occupation is any great deal to them. Yes I know they are trying to rule out environmental factors, but I have one of those jobs for one of those companies where people think that you don’t have to be particularly bright to do it. The fact that I am responsible for over 120 staff and sales of a million pounds a week doesn’t seem to mean anything.
The lady neurologist gives me a very thorough neurological exam, the first one I have had since January, its now June. My blood pressure is up through the roof which is unusual for me but then I’m scared. I think that she is going to tell me I have a brain tumour, I mean that’s why you lose the feeling in your arms and hands. She outlines what I definitely don’t have. I don’t have a tumour, I don’t have MS. However she thinks I could have diabetes, an aneurysm, or it could be something called Occular Myasthenia.I dismiss the last one as I have never heard of it. Plus she tells me that the condition isn’t painful. I later discover that if your muscles aren’t holding your skeleton in place correctly its bloody painful enough for you to be self administering morphine. Which to fellow myasthenics you shouldn’t do… its a muscle relaxant and could theoretically stop you breathing. The Dr wants a whole range of bloods taken. She says nonchalantly i expect your GP has ordered all these before but I would really like you to have them again. I tell her I haven’t had any bloods done. She does that Dr eye roll thing, the one where it would be unprofessional to say that your colleague is a lazy muppet. I see that quite a few more times over the next 12 months.
I have the blood tests and get the results. I have high cholesterol its 7.2, my neighbour next door who is in her 40s has had a stroke her cholesterol was 5.9 and shes on statins. I ask the receptionist if the GP wants to do anything about the cholesterol. She says no. Well that’s shocking isn’t it, my GP wants to continue to be paid for doing nothing!!! My blood sugar is fine its a 4. I am told that as long as its below a 6 its fine, however I check on the diabetes web site. I am rapidly losing faith in my GP. Now the important test for Myasthenia, they fucked up. They labeled the bloods incorrectly despite me bringing along the consultants letter and the nurse ringing the lab. So I am rescheduled for the test, the results take 3 weeks. I am anti body negative. I presume I don’t have Myasthenia, well I can’t have Ive never heard of it.
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