Well you have to have a good laugh especially after the letter I received from Lilith, as hubs and I are calling the Rheumy I visited on Wednesday. She was so devoid of human warmth or personality that we named her after Frazier Cranes wife!
I wasn’t hopeful that her report would be particularly nice reading. I expected her to say that I wasn’t doing enough to keep my joints strong and my weight was causing the issue. You could have knocked me down with a feather when I read her letter. It was a typical Dr’s letter but at the top it read
Diagnoses: General Joint Hyper mobility (possibly Ehler Danlos Syndrome type 3)
Possible Myasthenia Gravis
I have highlighted the bit that made me laugh the most! Her reasoning behind why she felt I had Myasthenia Gravis, that’s because I respond to pyridostigmine bromide (mestinon) and I turned up to the appointment with the right side of my face looking like I’d had a stroke and my right eye closed with ptosis. She told my GP to refer me back to my old neuro! Laughed I nearly fell off my chair. He’s going to be so thrilled to have me back on his books. I am expecting he will hand me off to a registrar or colleague rather than have to deal with me again. After all it would be a bit embarrassing to have to deal with the lady with numerous conditions after you gave her a clean bill of health 12 months earlier! After writing in her notes its all in her head.
That’s what is quite good about living in a small area (and what can be quite bad about it) there’s only one hospital in my location and one neurology team that I can be referred to. So all his colleagues will know I have been his patient previously.
I had been beginning to think that maybe I had chosen the wrong name for my Blog and it was an act of fraud masquerading as the myasthenia kid. I had been contemplating changing the name, what to I had no idea. The name just didn’t sit well with me anymore.
Outside the world of Blog at medical appointments and the like I didn’t mention the condition Myasthenia Gravis. If anyone asked me about my facial weakness and ptosis I would just say no one knows what causes it, but it responds to pyridostigmine bromide (mestinon) and leave them to draw their own conclusions. I believed I would never actually find a name for what was causing my ptosis, facial weakness and my ability to choke on my own saliva at frequent intervals throughout the day. I sought other answers for why this happened but nothing really explained why I responded to mestinon. Don’t get me wrong I’m not considering one Dr’s opinion a diagnosis, after all neurology is not her speciality. Its just really made me laugh that the diagnosis of MG has reared its ugly head again.
She notes in her letter that I have hyper mobile fingers, knees, spine and wrists. I didn’t realise that your spine could be hyper mobile, I know it causes me pain and its obviously a series of joints but I had never even considered it. Also my scar from my operation to remove bowel adhesion’s in 1998 is tethered – I don’t know what that means exactly all I know is it looks a bloody mess. Plus I have traumatic scars on my knees! Sounds dramatic doesn’t it? All it means is that I like to fall down …. a lot!
She informs my GP what medications to put me on gabapetin (that may be spelt terribly wrong but I am really tired so please excuse me) for nerve pain to try and get it under control. I am also being referred for physio as we know already.
So what she lacked in personality and warmth she made up for in her letter. Its a clear concise report with no Dr double speak and nothing to be read between the lines. It has a couple of errors such as she has made my weight 20 kilos lighter than it actually is. That was a bonus! Until you read the next sentence that says I am overweight! I know I am but how am I supposed to lose weight? I barely eat due to the gastroparesis and movement causes pain or fainting? I’m hardly going to nip out for a jog.
So presently the joints are still sore but the wallet isn’t hurting so much.