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Am I still in my first attack?
Hi everyone. I'm brand new to this site. I'm a 33 year old woman living in Toronto, Canada.
On June 12, 2011 I started experiencing tingling and hypersensitivity in my right hand. At its worst it was in my back and got as low as my right thigh but it eventually "settled" into my right arm and down the front of my chest to just above my right breast. (Thankfully no symptoms in the breast or abdomen, also no MS Hug). I also had some urinary hesitancy and fatigue.
After five visits to the ER in as many days, I demanded (and got) an MRI of the brain and spinal cord on an urgent basis. I was diagnosed by a neurologist with Clinically Isolated Syndrome highly suggestive of MS on July 5, 2011 and I started Copaxone on July 24, 2011. Everything happened very quickly. Even though I don't remember having any symptoms like these in the past, no limbo-land for me...for that I am eternally grateful.
On August 1, 2011 I experienced pain in my left eye that went away by August 4. On August 10 I got the pain behind my right eye. It's really, really mild - I only feel it when I roll my eyes way up and to the right. During August I've also developed a few cobweb-like floaters in my eyes. They're pretty easy to ignore.
It's now August 24, 2011. I am 2.5 months into this attack. My hand, which was the most dramatically affected part of my body, is now about 50% better. I had some stiffness in my hand which is almost gone. The sensation is about 50% back to normal. I feel completely normal in my back and torso. I do, however, have some L'Hermitte's sign. That developed about 3 weeks ago. Again, it's pretty mild...just a buzz in my hands when I lower my head and sometimes in my upper thighs after walking quite a bit. Nothing in the arms, legs or spine. No weakness, no disability. I have ridden this attack out with no medications whatsoever.
I have several brain lesions and one in my spine from C2 to C4. The spine lesion was really, really faint on MRI - I had to use a magnifying glass to really see it. I saw that one of my brain lesions had "lit up" when I saw the neuro for the first time.
My question is....do you guys think I'm I still in my first attack, or am I now just dealing with the "day to day" of this condition? I would like to know if I should log an "end date" in my journal yet. I know that another attack would be proof positive of MS so I want to be as specific as possible.
Thanks so much for taking the time. I look forward to many new friendships out here!
On June 12, 2011 I started experiencing tingling and hypersensitivity in my right hand. At its worst it was in my back and got as low as my right thigh but it eventually "settled" into my right arm and down the front of my chest to just above my right breast. (Thankfully no symptoms in the breast or abdomen, also no MS Hug). I also had some urinary hesitancy and fatigue.
After five visits to the ER in as many days, I demanded (and got) an MRI of the brain and spinal cord on an urgent basis. I was diagnosed by a neurologist with Clinically Isolated Syndrome highly suggestive of MS on July 5, 2011 and I started Copaxone on July 24, 2011. Everything happened very quickly. Even though I don't remember having any symptoms like these in the past, no limbo-land for me...for that I am eternally grateful.
On August 1, 2011 I experienced pain in my left eye that went away by August 4. On August 10 I got the pain behind my right eye. It's really, really mild - I only feel it when I roll my eyes way up and to the right. During August I've also developed a few cobweb-like floaters in my eyes. They're pretty easy to ignore.
It's now August 24, 2011. I am 2.5 months into this attack. My hand, which was the most dramatically affected part of my body, is now about 50% better. I had some stiffness in my hand which is almost gone. The sensation is about 50% back to normal. I feel completely normal in my back and torso. I do, however, have some L'Hermitte's sign. That developed about 3 weeks ago. Again, it's pretty mild...just a buzz in my hands when I lower my head and sometimes in my upper thighs after walking quite a bit. Nothing in the arms, legs or spine. No weakness, no disability. I have ridden this attack out with no medications whatsoever.
I have several brain lesions and one in my spine from C2 to C4. The spine lesion was really, really faint on MRI - I had to use a magnifying glass to really see it. I saw that one of my brain lesions had "lit up" when I saw the neuro for the first time.
My question is....do you guys think I'm I still in my first attack, or am I now just dealing with the "day to day" of this condition? I would like to know if I should log an "end date" in my journal yet. I know that another attack would be proof positive of MS so I want to be as specific as possible.
Thanks so much for taking the time. I look forward to many new friendships out here!
Thanks so much for your replies. My vision is getting a tiny bit more blurry and these floaters are driving me batty. I guess the fact that I've been staring at a computer screen at work for most of the day isn't helping.
I don't think my first attack is over yet. I have a second MRI and Evoked Potential test in October 2011 so hopefully I'll get more answers at that point. Supermum, sorry I wasn't clear... the MRI that I had that showed a "lit up" lesion in my brain was taken while I was in the middle of this attack. For this reason my neuro decided that he couldn't diagnose me with MS yet. Apparently I have to have a separate clinically defined attack or changes in my next MRI or a poor EP test in order to be diagnosed with CDMS. Even if i get the CDMS diagnosis, though, very little will change on my end. I'm already on Copaxone and already living my life as though this is a part of it, so the diagnosis won't really change anything for me. I've gotten to that point.
How are your conditions going? How have things unfolded for both of you? Look forward to hearing from you! :)
I don't think my first attack is over yet. I have a second MRI and Evoked Potential test in October 2011 so hopefully I'll get more answers at that point. Supermum, sorry I wasn't clear... the MRI that I had that showed a "lit up" lesion in my brain was taken while I was in the middle of this attack. For this reason my neuro decided that he couldn't diagnose me with MS yet. Apparently I have to have a separate clinically defined attack or changes in my next MRI or a poor EP test in order to be diagnosed with CDMS. Even if i get the CDMS diagnosis, though, very little will change on my end. I'm already on Copaxone and already living my life as though this is a part of it, so the diagnosis won't really change anything for me. I've gotten to that point.
How are your conditions going? How have things unfolded for both of you? Look forward to hearing from you! :)
Hey littlelawbear. Love, love, love that name without even knowing the story behind it!
I think you question is an excellent one but isn't going to have an easy or obvious answer. Unfortunately, we don't get to use the EASY button too often around here :(
It takes quite a while to learn the individual rhythm of your symptoms. Some things will appear together but exit on quite different schedules. Some things may reappear for a short time if you get too tired or too warm but disappear again quickly. You may start to notice things now that were present but ignored in the past.
I think the best thing is to do exactly what you are doing now. Keep journaling the things you experience but don't worry about sectioning off of labeling any of it for now. Things have a way of finding their place and showing their patterns if we simply observe and give them time to show us the things we need to know.
It is wonderful that you are already on disease modifying treatment. This truly gives you the freedom to be more relaxed about learning about MS without worry about loss of treatment time. Still, it must be quite an adjustment you're facing with that intense trip through ER limboland. Congrats on fighting so hard for what you needed right from the get-go.
Welcome to our group. We're glad to have you but always wish we all met up in a different clubhouse.
Gotta go before the storm outside eats this message, the computer, the dog, and me.
Mary
I think you question is an excellent one but isn't going to have an easy or obvious answer. Unfortunately, we don't get to use the EASY button too often around here :(
It takes quite a while to learn the individual rhythm of your symptoms. Some things will appear together but exit on quite different schedules. Some things may reappear for a short time if you get too tired or too warm but disappear again quickly. You may start to notice things now that were present but ignored in the past.
I think the best thing is to do exactly what you are doing now. Keep journaling the things you experience but don't worry about sectioning off of labeling any of it for now. Things have a way of finding their place and showing their patterns if we simply observe and give them time to show us the things we need to know.
It is wonderful that you are already on disease modifying treatment. This truly gives you the freedom to be more relaxed about learning about MS without worry about loss of treatment time. Still, it must be quite an adjustment you're facing with that intense trip through ER limboland. Congrats on fighting so hard for what you needed right from the get-go.
Welcome to our group. We're glad to have you but always wish we all met up in a different clubhouse.
Gotta go before the storm outside eats this message, the computer, the dog, and me.
Mary
COMMUNITY LEADER
Hi and welcome to our little corner of the web, if you haven't done so already, please take a look at our health pages the 'mcdonald criteria' may be of interest to you, though i'm sure you'll find a few others too.
Unfortunately from my understanding, your already meet the 'time and space' criteria for the dx of MS because you have existing spinal and brain lesions, along with new lesion lighting up in your brain, which is evidence of at least two seperate attacks in more than two locations. In a way being dx with CIS and being on a DMD is proactive, and it is the recommended course of action with either dx.
As for still being in your first attack, its actually hard to say because there really hasn't been a break yet, relapses can last months sometimes. Rule of thumb is that to be counted as a relapse you need a break of at least 30 days (a bit perdantic lol) between them, your sx need to return and or with an additional new sx and continue for a minimum of 24-48 hours. There is a health page on relapses that explains it a bit better than i just did :-)
Welcome.............JJ
Unfortunately from my understanding, your already meet the 'time and space' criteria for the dx of MS because you have existing spinal and brain lesions, along with new lesion lighting up in your brain, which is evidence of at least two seperate attacks in more than two locations. In a way being dx with CIS and being on a DMD is proactive, and it is the recommended course of action with either dx.
As for still being in your first attack, its actually hard to say because there really hasn't been a break yet, relapses can last months sometimes. Rule of thumb is that to be counted as a relapse you need a break of at least 30 days (a bit perdantic lol) between them, your sx need to return and or with an additional new sx and continue for a minimum of 24-48 hours. There is a health page on relapses that explains it a bit better than i just did :-)
Welcome.............JJ
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