Tuesday, 30 March 2010

NUMB

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?

3 comments:

Cameogal420 said...

A friend of mine sent a link to your blog.

I have Myasthenia Gravis and was diagnosed in 1999. If you'd like to talk about this (and I've had an experience eerily similar to yours), please feel free to contact me.

Incidentally, there is a lot of information on cortical plasticity. The information on the Internet is particularly technical. But one link in particular I found interesting as it refers to a connection between CP and cholinesterase. I am providing the link, below:

(URL)http://www.sciencemag.org/cgi/content/abstract/265/5180/1885(/url)

Please don't hesitate to contact me, if you wish. I hate to see people suffer needlessly.

Lynne

The Myasthenia Kid said...

Hi Lynne,
thank you for contacting me.

Sorry what I wrote in my blog wasn't clear around cortical plasticity, what I should have written was there wasn't much on there being given that diagnosis. I was told I'd had a virus and it had rewired my brain. But I hadn't been sick before I became ill. I had a migraine the week before.

I did buy a book on cortical plasticity but it was about helping the brain recover from a stroke all the like.

I should say I hadn't found anything that related to me.

Thank you so much for your comment and I would very much like to hear from you.

The Myasthenia Kid said...

you can email me at exemployee123@googlemail.com