Hey there everyone. I've been hovering around & posting occasionally since my diagnosis last January, but just wanted to officially introduce myself....
I'm a 30-year-old woman, living in the NYC area for the last 6 years (but born & raised in VA). I live with my wonderful husband, dog, and cat, and am always busy (but happily so) finishing up grad school and working. We don't have kids yet, but we're planning to start trying in the next year or so. In down time, I love to cook, read, draw, make music, etc.
I was diagnosed with RRMS six months ago, but like so many of you, I can trace symptoms pretty far back. Even as a child, I developed vertigo at the drop of a hat! I started having migraines in my teens, and had my first MRI - which was normal - at the age of 16.
In my early 20s, I started to develop clusters of symptoms - I now believe this was when active demyelination may have started. I experienced episodes of vertigo, pain in my arm into my hand (thought I had pinched a nerve), a crawly pins & needles feeling on my scalp, clumsiness, and muscle spasms (including what I think was the "MS Hug" - just really frequent and painful spasming of the muscles in and around my ribcage). In addition, I had this overarching sense that something was really WRONG with my body. All of these symptoms were chalked up to anxiety and panic attacks. Being a psychology student, I readily accepted this diagnosis - though I was pretty amazed at what anxiety could do to a person!
In my mid-20s, I went to see my doctor about getting on migraine meds, and he referred me to a neurologist. The neuro ordered an MRI, which revealed 12 lesions that were characteristic of inflammatory or demyelinating disease. But the report didn't rule out migraines as the cause of the lesions, and my neuro (who I seriously doubt looked at anything but the report) said it was fine. But he did recommend I come back in 6 months for a follow-up...I didn't, and put the whole thing out of my mind.
Until last November, when I travelled to a conference that was held in the tallest hotel in the U.S. The entire time I was there, I thought the building was swaying! I felt like I was on a gently rocking boat. It wasn't until I got back home that I realized the boat-rocking feeling was me - and it was NOT going away. After a couple of weeks of worsening unsteadiness and dizziness, I made an appointment with a new neurologist (I had moved). He ordered a new MRI, which showed pretty much the same thing as the previous one - 12+ lesions. But this time, the report clearly said "moderate white matter disease consistent with demylenating disorder, such as MS." This neurologist wanted to conduct an LP right then and there - but I honestly kind of thought he was a quack. He had lost my files and generally just didn't seem on top of his game - the idea of him sticking a needle into my spine was not very appealing!
So I made an appointment with the foremost MS specialist and researcher in NYC for a second opinion. I thought if I was gonna have an LP, I might as well have it done by the best! He was awesome - he fit me in within 36 hours of my call, thouroughly reviewed all of my MRI films and reports, and conducted an hour-long examination and interview. Then, he gave me good news and bad news. Good news - no LP! Bad news - a diagnosis of "probable" RRMS. He said the only thing he would need to make a full diagnosis was to rule out was other differentials (Lyme, etc.), which was done in no time.
Since then I've been grappling with the diagnosis but slowly coming to terms with it. This site has helped me SO MUCH in the process. Thank you all!!! It is so nice to meet you.
All the best,
"Shamby"
I'm a 30-year-old woman, living in the NYC area for the last 6 years (but born & raised in VA). I live with my wonderful husband, dog, and cat, and am always busy (but happily so) finishing up grad school and working. We don't have kids yet, but we're planning to start trying in the next year or so. In down time, I love to cook, read, draw, make music, etc.
I was diagnosed with RRMS six months ago, but like so many of you, I can trace symptoms pretty far back. Even as a child, I developed vertigo at the drop of a hat! I started having migraines in my teens, and had my first MRI - which was normal - at the age of 16.
In my early 20s, I started to develop clusters of symptoms - I now believe this was when active demyelination may have started. I experienced episodes of vertigo, pain in my arm into my hand (thought I had pinched a nerve), a crawly pins & needles feeling on my scalp, clumsiness, and muscle spasms (including what I think was the "MS Hug" - just really frequent and painful spasming of the muscles in and around my ribcage). In addition, I had this overarching sense that something was really WRONG with my body. All of these symptoms were chalked up to anxiety and panic attacks. Being a psychology student, I readily accepted this diagnosis - though I was pretty amazed at what anxiety could do to a person!
In my mid-20s, I went to see my doctor about getting on migraine meds, and he referred me to a neurologist. The neuro ordered an MRI, which revealed 12 lesions that were characteristic of inflammatory or demyelinating disease. But the report didn't rule out migraines as the cause of the lesions, and my neuro (who I seriously doubt looked at anything but the report) said it was fine. But he did recommend I come back in 6 months for a follow-up...I didn't, and put the whole thing out of my mind.
Until last November, when I travelled to a conference that was held in the tallest hotel in the U.S. The entire time I was there, I thought the building was swaying! I felt like I was on a gently rocking boat. It wasn't until I got back home that I realized the boat-rocking feeling was me - and it was NOT going away. After a couple of weeks of worsening unsteadiness and dizziness, I made an appointment with a new neurologist (I had moved). He ordered a new MRI, which showed pretty much the same thing as the previous one - 12+ lesions. But this time, the report clearly said "moderate white matter disease consistent with demylenating disorder, such as MS." This neurologist wanted to conduct an LP right then and there - but I honestly kind of thought he was a quack. He had lost my files and generally just didn't seem on top of his game - the idea of him sticking a needle into my spine was not very appealing!
So I made an appointment with the foremost MS specialist and researcher in NYC for a second opinion. I thought if I was gonna have an LP, I might as well have it done by the best! He was awesome - he fit me in within 36 hours of my call, thouroughly reviewed all of my MRI films and reports, and conducted an hour-long examination and interview. Then, he gave me good news and bad news. Good news - no LP! Bad news - a diagnosis of "probable" RRMS. He said the only thing he would need to make a full diagnosis was to rule out was other differentials (Lyme, etc.), which was done in no time.
Since then I've been grappling with the diagnosis but slowly coming to terms with it. This site has helped me SO MUCH in the process. Thank you all!!! It is so nice to meet you.
All the best,
"Shamby"
"...the joy of the Lord is your (my) strength." Nehemiah 8:10
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