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Thanks almost back to pre hospital weight. 5kgs of fluid gone....I feel so much more comfortable. It does make me a bit wary of my next lot of treatment but at least I have a really good physician who will listen if I tell him I only want 4 doses in future.
I'm having other problems which I don't understand but are very worrying. I have daily headaches (never been a headachey type person) which aren't severe. They last from waking until mid-late afternoon and are accompanied by tinnitus, sudden, severe lightning vertigo attacks and a feeling of spaciness or confusion. I also have times when I can't communicate...I become non verbal...I can't remember how to talk..it's difficult to explain. I've always depended on my left leg to help me walk inside my house but over the last 6 months or so my leg has become increasingly more "dead" with increased neuropathic pain. I had hoped it was caused by a fracture in my spine but the MRI showed no pinched nerves from my fracture. When I was in hospital I had my first Neuro exam in over 2 years (by Registrars doing their exams) and I noticed that my proprioception has worsened in my left leg since last exam and I've now lost vibration sense to left iliac crest on the left side (I had only ever lost vibration sense to knee previously). So something is happening neurologically and it's not good. I was unable to remark on these changes to my physician or I would have compromised the Reg exams and I haven't seen him since then. I also heard them all talking outside my room about being unable to do the touch your nose and their finger (don't know what this tests or what it's called) and I thought I'd done it pretty well...I know I had a large tremor while doing the test which was new but it was surprising to hear that the test results weren't normal....I think that's new too.
I'm on the list to get on the list to wait for an appointment (make sense?) to see a neurologist at a public hospital. They tell me the waiting list is between 4 to 5 years and I'm starting to think I will be well and truly bedridden by then. I did wait 6 months to see a neurologist privately but she didn't even examine me...she just read my referral letter, told me she knew nothing about my disease and she wouldn't take me on as a patient. She then kicked me out the door and charged me $375.
You think you're safe from medical indifference/incompetence when you have Medicare and top Private Health Insurance but it guarantees nothing.
I'm off to see my GP this afternoon (I haven't seen him for a couple of months) and I'm just going to tell him that it's up to him and me to find out what's happening, why it's happening and how to treat it....because no one else is going to. I'm going to be very assertive because not being independant in my own home is my worst nightmare.
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