The 7 years of diagnosis
it takes along time to diagnose ms. It's a strange little thing that tricks you all the time. You know those days when you're booked in for a haircut because your hair has become so unruly and messy looking. The day you get up and get ready for your hairdresser appointment, you look in the mirror and think, shit, my hair looks great this length. It's actually starting to suit me. You get on the blower and cancel your hairdresser appointment and give your hair ONE more chance.
This is what ms does in the early days. Cancelled Dr appointments constantly. You feel like a real bloody lunatic. Why have I felt like death again for the past three days,only to wake up and it's like it was never there. Oooh, those wonderful early days of ms.
When I did go to the doctors and explain what I'd been through, blood tests and other new tests would be performed with results coming back saying " shit, she's one very healthy young lady".
Then after a year or two of this, Drs start to look at your psyche. Next minute you have some sort of hypochondria or major anxiety etc etc. yes I was getting anxiety, but now I know why.
Then comes the stage that they just don't listen anymore. It's becoming so familiar to the doctor and I end up behaving like some crazy lady because they are fobbing me off. This only confirms to them that I am loosing my marbles.
By now I'm on a concoction of medications. So when I end up in emergency having strange seizure type thing's, I'm seen as a drug addict AND treated like one. They assume I'm there for a hit of something to heal my addiction.
My lord, the stories here I could tell. I will at some stage in my blog.
So it's a messy messy road (for some, it's been instantly picked up) good doctors, or doctors that have had experience with ms diagnosis previously, I don't know why and neither do the studies.
The strange part, is I blamed the doctors for so long. I don't now as I know it's very common and hard to diagnose. I do have a lot of hmmm, what do I call it?.......... let's say plain anger at the very poor medical system. The governments health system. My ms is classed as severe and aggressive with no treatment as it's at it's full stage of growth (my way of explaining it in layman s terms) . Im still seeing private specialists at $400 to $100 a visit. Yes I'm on the waiting list for public neurologist, rehabilitation/pain management, gastroenterologist and hematologist. It's been 4 years for some and near 2 years for others. Excellent work Mr Prime Minister. The irony here, I wouldn't be classed as severely disabled and unable to work if I'd gotten some medical assistance early in the ms stages. The taxes we paid, approximately $1000 per week we paid for years. I'm not proud to be a welfare recipient. I'd rather be working, I still can not and will not accept this part. In the back of my mind I'm still determined to work. Not full time, but enough to feel like I'm contributing to life. It's my biggest shame..... I'm disabled and sucking the system dry, just like they want you to feel.
There are a lot of publications on the mis diagnosis of ms. It's a very well known and big issue. Let me say one thing, it was so embarrassing to me to have a new name or diagnosis every month or so. I started to look like an absolute fake to my family and friends. Rightfully so too. If anybody I knew had changed their diagnosis 10 times in 18 months, I'd start to worry about their mental state.
https://youtu.be/nRGRoMNJAOE
This is what ms does in the early days. Cancelled Dr appointments constantly. You feel like a real bloody lunatic. Why have I felt like death again for the past three days,only to wake up and it's like it was never there. Oooh, those wonderful early days of ms.
When I did go to the doctors and explain what I'd been through, blood tests and other new tests would be performed with results coming back saying " shit, she's one very healthy young lady".
Then after a year or two of this, Drs start to look at your psyche. Next minute you have some sort of hypochondria or major anxiety etc etc. yes I was getting anxiety, but now I know why.
Then comes the stage that they just don't listen anymore. It's becoming so familiar to the doctor and I end up behaving like some crazy lady because they are fobbing me off. This only confirms to them that I am loosing my marbles.
By now I'm on a concoction of medications. So when I end up in emergency having strange seizure type thing's, I'm seen as a drug addict AND treated like one. They assume I'm there for a hit of something to heal my addiction.
My lord, the stories here I could tell. I will at some stage in my blog.
So it's a messy messy road (for some, it's been instantly picked up) good doctors, or doctors that have had experience with ms diagnosis previously, I don't know why and neither do the studies.
The strange part, is I blamed the doctors for so long. I don't now as I know it's very common and hard to diagnose. I do have a lot of hmmm, what do I call it?.......... let's say plain anger at the very poor medical system. The governments health system. My ms is classed as severe and aggressive with no treatment as it's at it's full stage of growth (my way of explaining it in layman s terms) . Im still seeing private specialists at $400 to $100 a visit. Yes I'm on the waiting list for public neurologist, rehabilitation/pain management, gastroenterologist and hematologist. It's been 4 years for some and near 2 years for others. Excellent work Mr Prime Minister. The irony here, I wouldn't be classed as severely disabled and unable to work if I'd gotten some medical assistance early in the ms stages. The taxes we paid, approximately $1000 per week we paid for years. I'm not proud to be a welfare recipient. I'd rather be working, I still can not and will not accept this part. In the back of my mind I'm still determined to work. Not full time, but enough to feel like I'm contributing to life. It's my biggest shame..... I'm disabled and sucking the system dry, just like they want you to feel.
There are a lot of publications on the mis diagnosis of ms. It's a very well known and big issue. Let me say one thing, it was so embarrassing to me to have a new name or diagnosis every month or so. I started to look like an absolute fake to my family and friends. Rightfully so too. If anybody I knew had changed their diagnosis 10 times in 18 months, I'd start to worry about their mental state.
Being mis-diagnosed is more common than you think
https://youtu.be/nRGRoMNJAOE
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