Hello everybody, my name is Nicole. I am 23 years old. I am currently a nurse and going to school to continue my education to get my BSN. Up until now I considered myself to be strong enough to deal with anything. I've participated in MS walks and donated for a few years now as my best friend's mother has MS, however, I never thought I would have it too. I basically came on here because no matter how strong I try to portray myself to my family, I feel like I'm deteriorating inside and I don't want to burden them with these feelings and make them worry more.
My story began in 2007 when I began having severe muscle spasms in my neck and upper back. I went to doctor after doctor for 4 years and they all told my I just had muscle spasms and it was nothing to worry about. I started to think I was crazy until I lost all function of my left arm. I had an MRI which revealed a herniated disc in my neck that was compressing my spinal cord and left nerve root. I had surgery one week later which seemed to get rid of all my symptoms. I had the surgery in January 2012 and approximately 6 months after surgery I began having different symptoms. I've had daily headaches for about 5 years now which I considered to be "my normal", yeah I know, that's ridiculous, but I thought it had to do with stress or my neck, but recently my headaches changed. I started waking up with the headaches and they started to feel throbbing in nature. I get occasional spontaneous vomiting. I have had blurred vision in my left eye for approximately one year and saw an eye doctor in november 2012 who stated that everything in my eye was fine, but suggested I see a neurologist.
I made an appointment with my PCP and neuro surgeon who ruled out lyme disease, lupus, RA, and multiple other diseases. They then thought that I maybe had a brain tumor and did a CT that showed nothing. Then they thought I was rejecting my spinal fusion, but ruled that out as well. In november I collected all of my medical records because I was thinking about changing PCP's, and good thing I got my medical records, because I found that my WBC had been elevated between 16 and 21 for 2 years, and not one doctor bothered to notify me.
I was then referred to an oncologist to have leukemia ruled out, which was ruled out. He then suggested I see a good neurologist other than my surgeon, so that's what I did. This neurologist stated that I should have an MRI to rule out MS. I had the MRI and got the report which stated "Acute MS plaque, possible infarcts, and possible neoplasm". I quickly called my neurologist who was furious with me for getting my medical records and stated, "There is nothing wrong with you, this MRI is completely normal, you need to calm down".
Needless to say I got a 2nd opinion 3 weeks ago and I really like this new neuro. He is 99% sure I have MS because I have over 10 lesions on my brain, already in every lobe and he stated I was losing my vision because one of the lesions is on my right occipital lobe. He ordered more tests including EP tests and LP. I had the LP last week which was awful, and CSF is showing high lymphocytes but cultures are negative for infection. IG tests are still pending, but I am rapidly deteriorating the past 2 weeks. I'm trying to stay strong, but all of these tests are wearing me out!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
My story began in 2007 when I began having severe muscle spasms in my neck and upper back. I went to doctor after doctor for 4 years and they all told my I just had muscle spasms and it was nothing to worry about. I started to think I was crazy until I lost all function of my left arm. I had an MRI which revealed a herniated disc in my neck that was compressing my spinal cord and left nerve root. I had surgery one week later which seemed to get rid of all my symptoms. I had the surgery in January 2012 and approximately 6 months after surgery I began having different symptoms. I've had daily headaches for about 5 years now which I considered to be "my normal", yeah I know, that's ridiculous, but I thought it had to do with stress or my neck, but recently my headaches changed. I started waking up with the headaches and they started to feel throbbing in nature. I get occasional spontaneous vomiting. I have had blurred vision in my left eye for approximately one year and saw an eye doctor in november 2012 who stated that everything in my eye was fine, but suggested I see a neurologist.
I made an appointment with my PCP and neuro surgeon who ruled out lyme disease, lupus, RA, and multiple other diseases. They then thought that I maybe had a brain tumor and did a CT that showed nothing. Then they thought I was rejecting my spinal fusion, but ruled that out as well. In november I collected all of my medical records because I was thinking about changing PCP's, and good thing I got my medical records, because I found that my WBC had been elevated between 16 and 21 for 2 years, and not one doctor bothered to notify me.
I was then referred to an oncologist to have leukemia ruled out, which was ruled out. He then suggested I see a good neurologist other than my surgeon, so that's what I did. This neurologist stated that I should have an MRI to rule out MS. I had the MRI and got the report which stated "Acute MS plaque, possible infarcts, and possible neoplasm". I quickly called my neurologist who was furious with me for getting my medical records and stated, "There is nothing wrong with you, this MRI is completely normal, you need to calm down".
Needless to say I got a 2nd opinion 3 weeks ago and I really like this new neuro. He is 99% sure I have MS because I have over 10 lesions on my brain, already in every lobe and he stated I was losing my vision because one of the lesions is on my right occipital lobe. He ordered more tests including EP tests and LP. I had the LP last week which was awful, and CSF is showing high lymphocytes but cultures are negative for infection. IG tests are still pending, but I am rapidly deteriorating the past 2 weeks. I'm trying to stay strong, but all of these tests are wearing me out!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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