Saturday, 21 May 2011

Got to laugh............................

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.


Hilary Melton-Butcher said...

Hi Rachel .. sounds laughable to a point .. does it help - I question?

Let's hope so .. cheers Hilary

Ellie said...

It just goes to show that you can't judge a book by it's cover!

How many times have you asked why does the mestinon work if I haven't got MG? Seems obvious to me that it indicates you do have it. Why can't THEY see that?

P.s. I'm still waiting for you to my ironing ;)

The Myasthenia Kid said...

re the ironing

do you have a date for hell freezing over LOL

Rach xx

Anonymous said...

Couldn't laugh at your sitch ... but that dog!!! Every time I see that photo I choke on my coffee!

The Myasthenia Kid said...

Thanks Frank,

The dogs name is Frankie and the picture is actually taken with him hanging his head off the sofa waiting for a tummy tickle. Hence why he looks slightly strange, or should I say coffee chokingly strange!
It was taken Christmas Day 2009 and it has to be my favourite pic of Frankie of all times.

Rach xx