My name is Connor and I am 19 years old.
-Ontario, Canada
Since I was about 16 I have been going from doctor to doctor getting various tests done (MRI's, CT Scans, Evoke Potentials etc...). Over a year ago I had an MRI and it turned out I had brain lesions. My neurobiologist said it is most likely either Lyme Disease, a tumor, Behcet`s Disease or Multiple Sclerosis. Since then I have had one more MRI on my brain and some blood tests and they have ruled out all but MS.
After my NB mentioned I may have MS, I did some of my own research and I display more than enough symptoms for me to know I have MS. Though my doctors do not have enough concrete evidence (from the MRI's, evoke potentials, etc...) to officially diagnose me, they seem to think that I have it as well.
I have many symptoms that affect my everyday life. I go through good and bad days, or cycles, like everyone else with MS.
My short-term memory is terrible compared to what it used to be. I already have an extremely hard time reading due to ADHD, but now I have to reread things several times for it to start to process in my head.
It's difficult for me to find words when I'm speaking, writing or typing. Even right now as I type this I am having difficulty finishing a sentence properly.
I also have plenty of physical symptoms.
I have difficulty balancing. I can just be walking through the house and I will fall over against the wall or catch myself on a counter top. This happens about 1-3 times a day.
Another symptom I find to be very annoying is that I get twitches on nearly every part of my body. They happen throughout the day, everyday. There are times when parts of my arms, hands and legs will be twitching nearly nonstop for hours.
I also get an occasional pain in my right arm that goes from the top of my neck to the tip of my pinky finger. It feels as if my nerve is getting a really strong electric jolt. It hurts so bad that it knocks the wind out of me. This happens about 1-2 times a week.
Ever since I was about 9 years old I have been very sensitive to heat. It isn't my body that gets too hot, but I have a very difficult time breathing in temperatures that I feel to be too high. Anything above 19 degrees Celcius (66 Farenheit) will cause me to have breathing difficulties. As I am typing this, where I live is about -15 degrees Celcius outside, yet I still have a fan blowing cold air into my room. If I do not have a fan in the winter or an air conditioner in the summer (in my window), I can not sleep.
I have a symptom that seems to be getting worse lately. It is called photopsia. Basically what happens is that when I am sleeping or lying in bed to go to sleep, I get flashes of light in my eyes. It's as if someone is holding a weak strobe light up to my face, but I can't get rid of it. It happens whether I have my eyes open or closed. It is sometimes bad enough that it wakes me up and I cannot fall back to sleep.
I have near constant headaches. I take high blood pressure medication for them, but I do not know how well they are working. I think I am just used to the headaches by now, so they don't seem as bad as they used to.
I also have many other mental and physical conditions. I have OCD, ADHD, clinical depression & anxiety. These do not seem to have a significant effect on my symptoms, but my physical ones do. I have moderate to severe-sleep apnea, high blood pressure and I may also have asthma and a heart murmur. Some doctors I've been to have said that I have asthma/a heart murmur and others have said I don't.
My high blood pressure causes my headaches to get worse and my core temperature to be higher than normal. I do not recall what my blood pressure is, but it is high for several reasons. I am overweight, tall (6'4") and my sleep apnea. It is also said that MS can cause you to have an increased blood pressure, so that sure does not help the situation.
The tests I have had so far are:
1 MRI of my spine
2 MRI's of my brain
1 CT Scan of my brain
1 Evoke Potential
Various blood tests.
I am going to be getting another MRI of my spine in a about a week, because my previous one did not turn out well. I am also supposed to be going to an MS specialist in July, but am trying to get in before then.
I am quite sure that if I were to have an Evoke Potential during the peak of one of my cycles, my doctors would finally diagnose me. I do not blame my doctors for them not diagnosing me, but I am upset at the fact that it takes so long to get into see the doctor, get tests done and find out the results. In my opinion, I should have been diagnosed months ago.
-Ontario, Canada
Since I was about 16 I have been going from doctor to doctor getting various tests done (MRI's, CT Scans, Evoke Potentials etc...). Over a year ago I had an MRI and it turned out I had brain lesions. My neurobiologist said it is most likely either Lyme Disease, a tumor, Behcet`s Disease or Multiple Sclerosis. Since then I have had one more MRI on my brain and some blood tests and they have ruled out all but MS.
After my NB mentioned I may have MS, I did some of my own research and I display more than enough symptoms for me to know I have MS. Though my doctors do not have enough concrete evidence (from the MRI's, evoke potentials, etc...) to officially diagnose me, they seem to think that I have it as well.
I have many symptoms that affect my everyday life. I go through good and bad days, or cycles, like everyone else with MS.
My short-term memory is terrible compared to what it used to be. I already have an extremely hard time reading due to ADHD, but now I have to reread things several times for it to start to process in my head.
It's difficult for me to find words when I'm speaking, writing or typing. Even right now as I type this I am having difficulty finishing a sentence properly.
I also have plenty of physical symptoms.
I have difficulty balancing. I can just be walking through the house and I will fall over against the wall or catch myself on a counter top. This happens about 1-3 times a day.
Another symptom I find to be very annoying is that I get twitches on nearly every part of my body. They happen throughout the day, everyday. There are times when parts of my arms, hands and legs will be twitching nearly nonstop for hours.
I also get an occasional pain in my right arm that goes from the top of my neck to the tip of my pinky finger. It feels as if my nerve is getting a really strong electric jolt. It hurts so bad that it knocks the wind out of me. This happens about 1-2 times a week.
Ever since I was about 9 years old I have been very sensitive to heat. It isn't my body that gets too hot, but I have a very difficult time breathing in temperatures that I feel to be too high. Anything above 19 degrees Celcius (66 Farenheit) will cause me to have breathing difficulties. As I am typing this, where I live is about -15 degrees Celcius outside, yet I still have a fan blowing cold air into my room. If I do not have a fan in the winter or an air conditioner in the summer (in my window), I can not sleep.
I have a symptom that seems to be getting worse lately. It is called photopsia. Basically what happens is that when I am sleeping or lying in bed to go to sleep, I get flashes of light in my eyes. It's as if someone is holding a weak strobe light up to my face, but I can't get rid of it. It happens whether I have my eyes open or closed. It is sometimes bad enough that it wakes me up and I cannot fall back to sleep.
I have near constant headaches. I take high blood pressure medication for them, but I do not know how well they are working. I think I am just used to the headaches by now, so they don't seem as bad as they used to.
I also have many other mental and physical conditions. I have OCD, ADHD, clinical depression & anxiety. These do not seem to have a significant effect on my symptoms, but my physical ones do. I have moderate to severe-sleep apnea, high blood pressure and I may also have asthma and a heart murmur. Some doctors I've been to have said that I have asthma/a heart murmur and others have said I don't.
My high blood pressure causes my headaches to get worse and my core temperature to be higher than normal. I do not recall what my blood pressure is, but it is high for several reasons. I am overweight, tall (6'4") and my sleep apnea. It is also said that MS can cause you to have an increased blood pressure, so that sure does not help the situation.
The tests I have had so far are:
1 MRI of my spine
2 MRI's of my brain
1 CT Scan of my brain
1 Evoke Potential
Various blood tests.
I am going to be getting another MRI of my spine in a about a week, because my previous one did not turn out well. I am also supposed to be going to an MS specialist in July, but am trying to get in before then.
I am quite sure that if I were to have an Evoke Potential during the peak of one of my cycles, my doctors would finally diagnose me. I do not blame my doctors for them not diagnosing me, but I am upset at the fact that it takes so long to get into see the doctor, get tests done and find out the results. In my opinion, I should have been diagnosed months ago.
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