So this is my first real attempt at blogging. I'm assuming that while there is much I can blog about, which I'm sure I will at some point, this will be theraputic for me as I deal with things that seem to keep popping up since my "clinical diagnosis" of MS.
In March 1997, I was treated for bimaxillary congestion, decreased vision in the left eye and subsequent loss of vision. According to the doctor's records, "the patient had optic neuritis and did not fulfill the diagnostic criteria for multiple sclerosis. There were some changes seen on the MRI scan of the brain but these were nonspecific". I was treated with IV Solu-Medrol, which caused all problems to go away.
Flash forward to March 2009. I read late into the night on March 14th and when I woke up the next morning, my right eye was hazy and my vision was diminished. My first thought was I stayed up way too late reading and just made my eyes tired. The problem persisted, worsened, and started to hurt. I immediately knew I had optic neuritis again and attempted to schedule an appointment with the neurologist, however I was told that he would only see me by referral. So....I went to the eye doctor, who confirmed my thoughts, and referred me on after telling me that I obviously have MS due to the fact that I've now have had optic neuritis twice in two different locations. The neurologist spoke to me quite candidly and said that I had to get on insurance, I had the right to refuse any and all suggested testing (wanted to perform a lumbar puncture as well as an MRI), and that by testing and confirming his suspicions, my medical record would always be red flagged with an MS diagnosis. I promptly refused all recommended tests and we proceeded to IV Solu-Medrol treatment again. During the in-office questioning, it was determined that I'd had some Lhermitte's like phenomenon down my spine and arms on numerous occasions. Also, the fact that I'd lost all sense of smell for 4 - 5 months after the birth of my youngest was also attributed to neurological issues by the neurologist. The doctor clinically diagnosed me as having multiple sclerosis and again, strongly urged that I do whatever I can to get on health insurance because the next "episode" might be far worse than losing eye sight.
Okay. So I've been "clinically diagnosed". What does that mean? Do I have MS? Am I jumping to conclusions just because 2 different doctors have said MS? Am I being a hypochondriac? Am I reading too much on the internet?
I'm tired all the time. I went to the doctor and had a complete blood panel done thinking my thyroid is out of wack, and it was completely normal. Is this because of the "MS"? I had two days a couple of weeks ago where I had the electric zings run down my spine. Is this because of "MS"? Sometimes it seems that I have problems with speaking - slurred, mumbling, etc. Is this because of "MS"? My thought process seems to not be what it was (I'm only 39!!!). Is this because of "MS"? I have itching incessantly on my legs to the point where I bleed. Nothing I do will stop the itch - it feels like it's inside my skin. Is this because of "MS"? Once in a while, there is a spot about the size of a quarter on my head that itches terribly for a week or so. Again, it feels like it's inside my skin. Is this because of "MS"? I seem to have a nystagmus issue now. Is this because of "MS"? So many questions and yet no answers.
I'm tired all the time. I went to the doctor and had a complete blood panel done thinking my thyroid is out of wack, and it was completely normal. Is this because of the "MS"? I had two days a couple of weeks ago where I had the electric zings run down my spine. Is this because of "MS"? Sometimes it seems that I have problems with speaking - slurred, mumbling, etc. Is this because of "MS"? My thought process seems to not be what it was (I'm only 39!!!). Is this because of "MS"? I have itching incessantly on my legs to the point where I bleed. Nothing I do will stop the itch - it feels like it's inside my skin. Is this because of "MS"? Once in a while, there is a spot about the size of a quarter on my head that itches terribly for a week or so. Again, it feels like it's inside my skin. Is this because of "MS"? I seem to have a nystagmus issue now. Is this because of "MS"? So many questions and yet no answers.
Now that I have insurance through my husband's employer, I can go back to the neurologist for further testing. But what if he doesn't stay with this employer and I end up having no coverage? Do I really need this kind of red flag on my record? While shopping for insurance this summer, once the insurance companies found that I'd had optic neuritis twice, they immediately told me I was uninsurable. With the upcoming changes in the law regarding insurance and pre-exsisting conditions, I know that I will be able to get insurance....but at what price?
I am frustrated and confused. I want answers and yet, I don't want answers. What is a person to do?
