First entry post diagnosis - 12/3/08
Hi friends - How are you all? I know this is quite early for a holiday email, but I wanted to share some things that have been going on in my world in the last month, and though email isn't the ideal way to disclose something, I thought it best to find everyone to make sure that you know before you hear it from anyone else. I have some unfortunate news to share.
Shortly after the election, I suddenly lost sight in my left eye. I postponed going to the optometrist until Friday November 14th....and when I went to the optometrist she did an exam and immediately called the neuro-opthamologist, who saw me that same day and had me go and get an MRI that night. Spent a horrible weekend wondering what on earth was going on, and got my MRI results that Monday.
Turns out I have multiple sclerosis, and it is likely that I have had it for years. It explains a lot of the things that I have experienced in the past couple of years - it is likely that my spinal cord contusion from being rear-ended in 2002 triggered the first onset of symptoms, and that the other back spasms, numbness, and nerve pain have all been associated with having MS. I also was treated for carpal tunnel syndrome in 2005 when my fingers had gone numb for a couple of months - that was likely a flare-up as well. There is evidence of scarring in my brain from previous attacks, which confirms the MS diagnosis because there have to be at least 2 clinically-reported events separated in time, and MRI evidence of those past events having created scars in my brain. I have both.
My neurologist is at Evanston Hospital - the new Northshore Connect system. He is very patient and helpful - he went through all the MRIs with me and Steve and answered all 38 of my questions that I had written out before our appointment. The day I got my MRI results, I was shocked to learn that there are between 20-30 active lesions in my brain where my immune system is actually attacking the myelin, the protective coating on the neurons. MS is named for "multiple scarring", with each "exacerbation" or "relapse" these lesions form, and about 90% of them heal with steroids, and about 10% leave scars. The accumulation of scars eventually disrupts the signals between neurons, causing a host of problems, but it will probably take many years.
After the MRI results came back, I immediately started having IV steroid infusions - got to spend some time at the infusion clinic/chemo area at Evanston Hospital every day. I am slowly weaning off the steroids orally - I hope to be done with them in a couple of days. The next step that will happen this week is that a nurse from the drug company that makes my new medication, Betaseron, will be coming to train me and Steve how to mix my medication and how to give myself shots. There are 8 possible injection sites, and we have to rotate, but 4 of them can only be reached by someone else. Steve seems willing to give me the shot, so I'll only have to do about half of them for the few months that he is home. It is an ever-other-day treatment, with the unfortunate side effect of making you feel like you have the flu every other day. So the first month might be majorly rocky, but between 1-3 months the side effects should abate as my body gets used to it and I should start feeling better. Or else they'll have to try to a different medication. So I guess we just have to see.
Anyway, the world has been turned a bit upside for me in that kind of regard. It's hard knowing that I am facing a progressive degenerative disease and I am only 28. And it is a very unpredictable illness - no one knows what causes MS, and no one can give any estimate as to what part of my Central Nervous System/brain will be attacked next or when. They really can't tell me much other than that this medication should hopefully prolong the periods of time between relapses, and also may reduce the number of lesions that occur during a relapse. However, it is not a cure, and it will not prevent me from having relapses overall, but prolong the periods between.
What a year it has been....I promise to write everyone during the holidays and am slowly getting to making phone calls as well (and I wanted to let everyone know that I do check email everyday - I am just behind in responding! and my cell number is (773) 368-1676) - I just wanted to let people know as the cat was out of the bag when I went home for Thanksgiving and I didn't want anyone to hear it from someone other than me.... I look forward to talking to all of you soon...
Shortly after the election, I suddenly lost sight in my left eye. I postponed going to the optometrist until Friday November 14th....and when I went to the optometrist she did an exam and immediately called the neuro-opthamologist, who saw me that same day and had me go and get an MRI that night. Spent a horrible weekend wondering what on earth was going on, and got my MRI results that Monday.
Turns out I have multiple sclerosis, and it is likely that I have had it for years. It explains a lot of the things that I have experienced in the past couple of years - it is likely that my spinal cord contusion from being rear-ended in 2002 triggered the first onset of symptoms, and that the other back spasms, numbness, and nerve pain have all been associated with having MS. I also was treated for carpal tunnel syndrome in 2005 when my fingers had gone numb for a couple of months - that was likely a flare-up as well. There is evidence of scarring in my brain from previous attacks, which confirms the MS diagnosis because there have to be at least 2 clinically-reported events separated in time, and MRI evidence of those past events having created scars in my brain. I have both.
My neurologist is at Evanston Hospital - the new Northshore Connect system. He is very patient and helpful - he went through all the MRIs with me and Steve and answered all 38 of my questions that I had written out before our appointment. The day I got my MRI results, I was shocked to learn that there are between 20-30 active lesions in my brain where my immune system is actually attacking the myelin, the protective coating on the neurons. MS is named for "multiple scarring", with each "exacerbation" or "relapse" these lesions form, and about 90% of them heal with steroids, and about 10% leave scars. The accumulation of scars eventually disrupts the signals between neurons, causing a host of problems, but it will probably take many years.
After the MRI results came back, I immediately started having IV steroid infusions - got to spend some time at the infusion clinic/chemo area at Evanston Hospital every day. I am slowly weaning off the steroids orally - I hope to be done with them in a couple of days. The next step that will happen this week is that a nurse from the drug company that makes my new medication, Betaseron, will be coming to train me and Steve how to mix my medication and how to give myself shots. There are 8 possible injection sites, and we have to rotate, but 4 of them can only be reached by someone else. Steve seems willing to give me the shot, so I'll only have to do about half of them for the few months that he is home. It is an ever-other-day treatment, with the unfortunate side effect of making you feel like you have the flu every other day. So the first month might be majorly rocky, but between 1-3 months the side effects should abate as my body gets used to it and I should start feeling better. Or else they'll have to try to a different medication. So I guess we just have to see.
Anyway, the world has been turned a bit upside for me in that kind of regard. It's hard knowing that I am facing a progressive degenerative disease and I am only 28. And it is a very unpredictable illness - no one knows what causes MS, and no one can give any estimate as to what part of my Central Nervous System/brain will be attacked next or when. They really can't tell me much other than that this medication should hopefully prolong the periods of time between relapses, and also may reduce the number of lesions that occur during a relapse. However, it is not a cure, and it will not prevent me from having relapses overall, but prolong the periods between.
What a year it has been....I promise to write everyone during the holidays and am slowly getting to making phone calls as well (and I wanted to let everyone know that I do check email everyday - I am just behind in responding! and my cell number is (773) 368-1676) - I just wanted to let people know as the cat was out of the bag when I went home for Thanksgiving and I didn't want anyone to hear it from someone other than me.... I look forward to talking to all of you soon...
posted by Kate @ 9:27 PM
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