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?