I think that I have been a heavy weight on the medical system lately. I have seen a number of specialists and I have only waited for what seemed like an eternity for one of them (a sleep disorder specialist). I didn't wait for tests, and I didn't wait for results. I have had 5 MRI's in a year (3 in 10 weeks!). Let's not forget that I was rushed to see a hepatologist, and received a liver biopsy!
On paper, wait times don't seem like much of an issue. But now, my feelings are starting to change. As far as I'm concerned, this is crunch time, and the system isn't doing me right.
Today, I spoke with the physiotherapist that I need to see in order to best restore my perceptions. She has an eight week...no wait...twelve week waiting list! But lucky me, because I'm not working, and I said that I am available on short notice...I'm on the short notice cancellation list.
And then there is the wait time at the MS Clinic. I spoke with my "favourite" nurse last week, and she has mailed me my new prescription, along with the requisitions for weekly, bi-weekly, and monthly blood tests. When starting the medication, it is recommended that the patient have a check-up with the doctor at the three month mark. I have a previously scheduled appointment for what will be close to four weeks...and that will be my check-up. The doctor is booked up until well after three months. Wow...if he can't see me, for a recommended check-up, who is going to read the lab results from the blood tests?
At this point, I'm also not scheduled for any MRIs. It has been almost 10 months since my last brain MRI. I was on therapy for 29 weeks and I am about to start another therapy. So we have no record as to how the first therapy worked, and we have no starting brain images for the new therapy. This means that the clinic puts patients on drugs without knowing the current medical state of the central nervous system. The drugs are meant to slow the progression of the disease, and promote the regrowth of myelin (if only slightly)...how do they expect to track the internal activity?
Ugh, I'm getting wobbly. Time to check-out...
Emily
Moving on?
Posted in on by
For a person who is currently not working, I sure do have a number of things going on in my life. Yes, I know what some of you are thinking...I am "working" on getting better. Point taken...and then some. Fortunately, I feel as if an end to a lot of this "stuff" is near. I have almost run out of scheduled doctors appointments...two left on the calendar, neither of which are new.
Yesterday was my last scheduled appointment with the ENT. The appointment was to review the results of the posturography and the EEG. My reaction to the news that I received at this appointment was not instant. It took a couple of hours for it to sink in that I was officially offered what has been best described as "hope".
The tests concluded that I am experiencing "motion intolerance". This is a real medical term...unlike my preferred moniker, "wobbles". Motion intolerance is the affliction and wobbles are the result. I have been unsuccessful at finding an official definition of "motion intolerance", but everything that the doctor said rang true to my experiences. Motion intolerance includes the sensation of yourself moving, or your surroundings. The indication, can be brought on by your surroundings moving, moving yourself, or simply moving your eyes. The message sent from your eyes to your brain, regarding the situation, gets jumbled.
Of the tests that were conducted, the posturography yielded the most concerning results. Apparently, despite the disease activity, my "wires" have been only somewhat compromised. According to the posturography, I have trouble keeping my feet planted when the scene I am facing is moving.
Did you know that when you are healthy, your center of gravity is focused around your ankles (messages are sent between your ankles and your brain) and when you are not as healthy, your center of gravity is in your hips?
Here is the good part...given the condition of my wires, I can be restored! The first time that I saw this doctor, he provided me with some cautiously positive news, this time...it was a definite positive! Vestibular physiotherapy, yoga, and some at-home exercises should correct my perceptions.
When this hit me yesterday afternoon, I was shocked. I was relieved. I was overjoyed. I was elated. I wanted to present this doctor with a medal! I could barely contain my excitement!
And...the doctor also said that the difficult time that I experienced following the tests was somewhat normal. Post testing experiences can range from nothing, a couple of weeks of difficult symptoms, to a brain "re-boot". This means that I did not experience a disease relapse. Clinically speaking (as oppossed to medically, as viewable on an MRI) the disease remains inactive. I'm just dealing with pseudo exacerbations, and the effects of that confounded initial attack.
Maybe I can begin to affectively move on,
Emily
Yesterday was my last scheduled appointment with the ENT. The appointment was to review the results of the posturography and the EEG. My reaction to the news that I received at this appointment was not instant. It took a couple of hours for it to sink in that I was officially offered what has been best described as "hope".
The tests concluded that I am experiencing "motion intolerance". This is a real medical term...unlike my preferred moniker, "wobbles". Motion intolerance is the affliction and wobbles are the result. I have been unsuccessful at finding an official definition of "motion intolerance", but everything that the doctor said rang true to my experiences. Motion intolerance includes the sensation of yourself moving, or your surroundings. The indication, can be brought on by your surroundings moving, moving yourself, or simply moving your eyes. The message sent from your eyes to your brain, regarding the situation, gets jumbled.
Of the tests that were conducted, the posturography yielded the most concerning results. Apparently, despite the disease activity, my "wires" have been only somewhat compromised. According to the posturography, I have trouble keeping my feet planted when the scene I am facing is moving.
Did you know that when you are healthy, your center of gravity is focused around your ankles (messages are sent between your ankles and your brain) and when you are not as healthy, your center of gravity is in your hips?
Here is the good part...given the condition of my wires, I can be restored! The first time that I saw this doctor, he provided me with some cautiously positive news, this time...it was a definite positive! Vestibular physiotherapy, yoga, and some at-home exercises should correct my perceptions.
When this hit me yesterday afternoon, I was shocked. I was relieved. I was overjoyed. I was elated. I wanted to present this doctor with a medal! I could barely contain my excitement!
And...the doctor also said that the difficult time that I experienced following the tests was somewhat normal. Post testing experiences can range from nothing, a couple of weeks of difficult symptoms, to a brain "re-boot". This means that I did not experience a disease relapse. Clinically speaking (as oppossed to medically, as viewable on an MRI) the disease remains inactive. I'm just dealing with pseudo exacerbations, and the effects of that confounded initial attack.
Maybe I can begin to affectively move on,
Emily
January
Posted in on by January seems to be my "happenings"month. I'm not talking about anniversaries or birthdays...just big happenings. Some are life changing events, and some are just dumb luck (or is it un-luck?).
Here are a few:
January 1993 - I had a large cyst removed from my neck...very scary at the time, now I just have a scar
January 2001 - I moved to Winnipeg...very scary at the time, now I'm a 'Pegger.
January 2005 - Jason and I moved into our "new house"...very overwhelming at the time, now I can't imagine not being here
January 2007 - I am diagnosed with MS...very scary at the time...
Hmmm, I will have to wait and finish 2007's recollection at a later date. However, if I was to examine the January trend, everything is going to be OK.
Emily
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