Diagnosed with Clinically Isolated Syndrome - READ MY STORY!
Posted: Wed Oct 12, 2011 12:42 pm
Hi everyone - just thought I'd introduce myself and give you the story of how I came to be diagnosed with Clinically Isolated Syndrome. I work as a lawyer in Toronto, Canada. I'm 33 years old and married for four years with no kids (yet!). I hope this story inspires you to be your own advocate and to demand your treatment.
I woke up on June 12, 2011 with a very slight tingling in my right index finger. I chalked it up to using too many cleaning solutions the day before. I just kept dousing it in cold water. Nothing helped. By the end of June 12, the numb/tingly feeling had crept up my right hand and wrist. I wasn't worried at that time - just thought I might have worked myself too hard the day before.
On the morning of June 13 I woke up and completely freaked out. My entire right arm had altered sensation (I'd say about 50% numb) and the feeling had spread into my right side from shoulder to hip. Nothing had hit my legs or my face. I seriously thought I was having a stroke. My husband and I hightailed it to our local emergency room, where I was told that it was "transient" and I should take two Advil and go to sleep.
By June 15 the numbness had spread into my back and I had developed pain on the right side where my arm meets my torso. I also had some pain and itching around my right armpit. It was uncomfortable as all hell to put my bra on. I was pretty convinced it was a pinched nerve but I talked to my mom (a retired Registered Nurse) who told me to haul ass to Sunnybrook Health Sciences Centre. After four hours in the ER and a normal neurological exam, I was told that an outpatient MRI of the brain and spinal cord were ordered for me (they only wanted to do the brain MRI but I pushed for the spinal cord as well) and I was told to go home and wait for the MRI.
A couple of days later I called Sunnybrook to follow up on the MRI and found out that the resident who had requisitioned the MRI messed it up in three places. They said I had diet-controlled diabetes (I don't) and only ordered the MRI of the brain instead of the brain and spinal cord. I pretty much lost it at that point. When you have a health care system like Canada, you cherish the "free" health care but you also have to demand your treatment.
I went to an urgent care centre at North York General Hospital on Sunday June 19 and demanded a CT Scan just so that we could get things moving. (The fact that my firm practices medical malpractice law did quite a bit to move the doctors along, I must admit!) The CT scan came back fine.
I went BACK to Sunnybrook's ER on June 20, dropped the medical malpractice lawyer thing, and was promptly seen by all six of the neurology residents as well as their instructor. During that visit, I noticed that the reflexes on my right knee weren't working. The chief neuro instructor, bless his heart, finally told me during that visit that he was "really worried" about multiple sclerosis.
I jumped on the back of the MRI department at Sunnybrook and got an MRI of the brain and spinal cord booked for July 1, 2011. I was also able to get an appointment with a neurologist at Sunnybrook for July 5, 2011.
On July 5, 2011, with my mom and my brother in tow, I went to the MS clinic at Sunnybrook and met with two neurologists and a MS clinical nurse, who calmly told me that although I had a good neurological examination, the MRIs showed multiple lesions in my brain (one had "lit up" indicating demyelineation) and an almost imperceptible lesion from C2 - C4 in my spine. I looked at the MRIs and began to cry. I swore to the doctors that I had never, ever experienced anything like this before in my life.
20 minutes later, I was diagnosed with Clinically Isolated Syndrome highly suggestive of MS.
Now, the good news. I started on Copaxone on July 24, 2011 - only 19 days after my diagnosis. My point here is that from first symptoms (ever) to first injection was about six weeks. For those of you in limboland, it can be done. You just have to push - HARD. If you're not a lawyer, maybe you know one (or may be interested in making the acquaintance of one). Whatever you need to do, guys.
I had a super mild bout of visual stuff (I'm still not sure what the hell it was) from August 3 to 6. It left me with some cobweb-like black floaters and maybe a bit of distorted peripheral vision, but it's so mild that it's hard to tell.
I'm doing much better now. The fatigue is gone. The altered sensation has remained only in my right arm from elbow to fingertips. The floaters are still there. My typing speed, at baseline, was 105 wpm. At worst it went down to 55 wpm. It's back up to 102 wpm (last time I checked). I'm still working, still winning in court, still loving, still living.
I have my next MRI this coming Friday (Oct. 14) and an evoked potential test on Oct. 25. If any of these are screwy, I'll get a diagnosis of clinically definite MS. And you know what? Nothing is going to change if I do get that diagnosis. I'm already being treated and taking medication like I have MS. I've reconciled the news in my own head. I've made tons of new friends. My husband and my family have taken the situation like a bunch of rock stars. So come what may - I'm still going to go on with my bad self.
Here's the moral, kids. BE YOUR OWN ADVOCATE AND DON'T LET THIS THING BECOME YOU.
I'm here if anybody wants to talk, vent or just laugh about whatever symptom bothered you today. Hope to hear from lots of you!
I woke up on June 12, 2011 with a very slight tingling in my right index finger. I chalked it up to using too many cleaning solutions the day before. I just kept dousing it in cold water. Nothing helped. By the end of June 12, the numb/tingly feeling had crept up my right hand and wrist. I wasn't worried at that time - just thought I might have worked myself too hard the day before.
On the morning of June 13 I woke up and completely freaked out. My entire right arm had altered sensation (I'd say about 50% numb) and the feeling had spread into my right side from shoulder to hip. Nothing had hit my legs or my face. I seriously thought I was having a stroke. My husband and I hightailed it to our local emergency room, where I was told that it was "transient" and I should take two Advil and go to sleep.
By June 15 the numbness had spread into my back and I had developed pain on the right side where my arm meets my torso. I also had some pain and itching around my right armpit. It was uncomfortable as all hell to put my bra on. I was pretty convinced it was a pinched nerve but I talked to my mom (a retired Registered Nurse) who told me to haul ass to Sunnybrook Health Sciences Centre. After four hours in the ER and a normal neurological exam, I was told that an outpatient MRI of the brain and spinal cord were ordered for me (they only wanted to do the brain MRI but I pushed for the spinal cord as well) and I was told to go home and wait for the MRI.
A couple of days later I called Sunnybrook to follow up on the MRI and found out that the resident who had requisitioned the MRI messed it up in three places. They said I had diet-controlled diabetes (I don't) and only ordered the MRI of the brain instead of the brain and spinal cord. I pretty much lost it at that point. When you have a health care system like Canada, you cherish the "free" health care but you also have to demand your treatment.
I went to an urgent care centre at North York General Hospital on Sunday June 19 and demanded a CT Scan just so that we could get things moving. (The fact that my firm practices medical malpractice law did quite a bit to move the doctors along, I must admit!) The CT scan came back fine.
I went BACK to Sunnybrook's ER on June 20, dropped the medical malpractice lawyer thing, and was promptly seen by all six of the neurology residents as well as their instructor. During that visit, I noticed that the reflexes on my right knee weren't working. The chief neuro instructor, bless his heart, finally told me during that visit that he was "really worried" about multiple sclerosis.
I jumped on the back of the MRI department at Sunnybrook and got an MRI of the brain and spinal cord booked for July 1, 2011. I was also able to get an appointment with a neurologist at Sunnybrook for July 5, 2011.
On July 5, 2011, with my mom and my brother in tow, I went to the MS clinic at Sunnybrook and met with two neurologists and a MS clinical nurse, who calmly told me that although I had a good neurological examination, the MRIs showed multiple lesions in my brain (one had "lit up" indicating demyelineation) and an almost imperceptible lesion from C2 - C4 in my spine. I looked at the MRIs and began to cry. I swore to the doctors that I had never, ever experienced anything like this before in my life.
20 minutes later, I was diagnosed with Clinically Isolated Syndrome highly suggestive of MS.
Now, the good news. I started on Copaxone on July 24, 2011 - only 19 days after my diagnosis. My point here is that from first symptoms (ever) to first injection was about six weeks. For those of you in limboland, it can be done. You just have to push - HARD. If you're not a lawyer, maybe you know one (or may be interested in making the acquaintance of one). Whatever you need to do, guys.
I had a super mild bout of visual stuff (I'm still not sure what the hell it was) from August 3 to 6. It left me with some cobweb-like black floaters and maybe a bit of distorted peripheral vision, but it's so mild that it's hard to tell.
I'm doing much better now. The fatigue is gone. The altered sensation has remained only in my right arm from elbow to fingertips. The floaters are still there. My typing speed, at baseline, was 105 wpm. At worst it went down to 55 wpm. It's back up to 102 wpm (last time I checked). I'm still working, still winning in court, still loving, still living.
I have my next MRI this coming Friday (Oct. 14) and an evoked potential test on Oct. 25. If any of these are screwy, I'll get a diagnosis of clinically definite MS. And you know what? Nothing is going to change if I do get that diagnosis. I'm already being treated and taking medication like I have MS. I've reconciled the news in my own head. I've made tons of new friends. My husband and my family have taken the situation like a bunch of rock stars. So come what may - I'm still going to go on with my bad self.
Here's the moral, kids. BE YOUR OWN ADVOCATE AND DON'T LET THIS THING BECOME YOU.
I'm here if anybody wants to talk, vent or just laugh about whatever symptom bothered you today. Hope to hear from lots of you!