Having waited over two weeks to hear from the Oxford Dr, I emailed him. It took 2 days for a reply and from the tone of the email, I knew he was washing his hands of me. I won’t bore you with the details but it told me I could speak to his secretary on Monday to discuss the contents of the letter.

I rang Monday morning and then the bomb was dropped on me. He doesn’t think I have MG, he’s passing me back to Dr X and he looks forward to hearing about my progress under Dr X. The same Dr X who has refused to see me since August, gave me lamotrigine that made my hair fall out and gave me the trash can diagnosis of cortical plasticity. Which if you try and look it up on the internet doesn’t really exist.

As I wasn’t getting the full report he would be sending to Dr X, I emailed his secretary and asked for the report to be sent to me. I need to know what he thinks is wrong with me – I’m guessing its functional symptoms. I’m so angry right now I don’t have any emotions. I’ve just shut down and I just can’t deal with anything. I’m in shock I guess.

I’ve been given the opthalmologists secretaries number for a copy of his report but I think I’m going to write to him because I want some answers re my eye movements and what his differential diagnosis would be.

At the moment I’m trying to get the strength together to pick myself up and carry on but its hard. No one, not even family can appreciate the depth of hurt, frustration or anger I feel at the moment. No matter how hard they try or how understanding they are. It isn’t happening to them.

I just been lied to over and over again by the medical profession. First it was IV steroids then that never happened. Then it was a plasma exchange, that got dropped after the first letter. Then it was you are very ill and I want to help you and now I’m dropping you and sending you back to Dr X.

What the hell do I do now? I’m running out of options and I’m not prepared to be written off at the age of 36. The thought of living my life like this for the next 50 years is not something I want to contemplate. I feel like Im being punished for wanting to get a diagnosis and get well. How can that be right?

pain in the neck!

Hi, it took a few days to happen but the crash came yesterday. I slept most of Sunday, I woke up feeling pretty weird and hubs noticed and sent me back to bed. My legs were very weak and shaky and I was struggling to keep my head up.

Today I feel a bit better but I’m very sluggish. My neck is killing me its getting to the point where I am just going to have to go to bed and lay down. I’m wearing a neck collar but the muscles in my scalp, neck and upper back have just had enough. The strain my neck is under keeping my head up is giving me constant headaches. Its so annoying as I just dont know what to do with myself.

Its so nice to be back on the mestinon and have both my eyes open! What a treat! Unfortunately as you can see the mestinon is doing nothing for my neck.

I’m now waiting for my letter to arrive from Oxford with the Dr’s report. Having had a bit of a hunt around on the internet today I can see that my eye exam was classical MG with occular involvement. Whenever I did an upward gaze my eyes twitched like crazy. But who knows the eye Dr said last time it was MG and was completely over ruled. The longer I wait for the report the less hopeful I get.

I emailed Dr Y today with the issues surrounding my blood pressure and the funny turns I keep having. Hopefully at some point he will get back to me. Who knows!

Thank you for following my blog, its nice to know people out there are reading it.