New here...confused...but dealing
Posted: Sat Nov 30, 2013 7:45 am
Good morning!
First off, I must confess I've been stalking this forum for about two months. I have learned so much from all the posts on here. I would have been a basket case after diagnosis if it weren't for the knowledge I gained before my appointment.
This might get long, but need to get it out...Thank you in advance for your time and patience.
I was diagnosed with CIS on November 5th, two days before my 42nd birthday.
I'm going to try and break it down to a brief timeline.
9/30 - didn't feel well. Shaky, off balance, thought I had caught a bug.
10/1 - felt better but my peripheral vision was "shaky"
10/2 - had bright flashes in peripheral vision. Decided I needed to see a doctor. Went to optometrist, he was concerned, first mention of MS, sent me to ophthalmologist.
10/3 - ophthalmologist appt. mentioned MS, stroke, or tumor. Sent me for MRI. At this point I cannot drive and need an eyepatch to see.
10/4 - MRI of brain...have lost all movement in left eye
10/8 - feeling scared and overwhelmed. Was afraid symptoms were starting in right eye as well. Dad took me to ER...was admitted to hospital. Experienced a terrifying FAILED lumbar puncture in ER trauma bay, moved to a room to begin a round of intravenous steroids.
10/9 - had a successful lumbar puncture and round 1 of steroids.
10/11 - three days of steroids and eye is almost back to normal. Released from hospital with follow up appt. with MS specialist.
11/5 - confirmed CIS diagnosis with three positives. Two in lumbar puncture, and three lesions on my brain "in all the right places" according to doctor.
It all happened so fast and has left me with many questions...I have started daily Copaxone injections and have a follow up with DR in February. My pain is bearable, mostly lower back pain every day which I have had for a little over a year. Was told it is mild arthritis. After two months, my eyes are finally 100%. I did wake up one morning a couple weeks ago with a sore jaw and numbness as if I had been to the dentist. I have random tingly sensations all over on occasions. Not necessarily painful, but uncomfortable. Every so often I get a sharp pinpoint of pain but not lingering.
I find myself wondering if I'm imagining some of this or if my body really IS attacking me from the inside, because that's how I feel. My skin has gotten dry and flakey, my face is breaking out, I'm absolutely exhausted all the time and I'm forgetting words and names...does it really happen this fast? I've always been healthy, this is crazy! Then I wonder if my back problems and one other previous eye infection may be associated...this is consuming me.
First off, I must confess I've been stalking this forum for about two months. I have learned so much from all the posts on here. I would have been a basket case after diagnosis if it weren't for the knowledge I gained before my appointment.
This might get long, but need to get it out...Thank you in advance for your time and patience.
I was diagnosed with CIS on November 5th, two days before my 42nd birthday.
I'm going to try and break it down to a brief timeline.
9/30 - didn't feel well. Shaky, off balance, thought I had caught a bug.
10/1 - felt better but my peripheral vision was "shaky"
10/2 - had bright flashes in peripheral vision. Decided I needed to see a doctor. Went to optometrist, he was concerned, first mention of MS, sent me to ophthalmologist.
10/3 - ophthalmologist appt. mentioned MS, stroke, or tumor. Sent me for MRI. At this point I cannot drive and need an eyepatch to see.
10/4 - MRI of brain...have lost all movement in left eye
10/8 - feeling scared and overwhelmed. Was afraid symptoms were starting in right eye as well. Dad took me to ER...was admitted to hospital. Experienced a terrifying FAILED lumbar puncture in ER trauma bay, moved to a room to begin a round of intravenous steroids.
10/9 - had a successful lumbar puncture and round 1 of steroids.
10/11 - three days of steroids and eye is almost back to normal. Released from hospital with follow up appt. with MS specialist.
11/5 - confirmed CIS diagnosis with three positives. Two in lumbar puncture, and three lesions on my brain "in all the right places" according to doctor.
It all happened so fast and has left me with many questions...I have started daily Copaxone injections and have a follow up with DR in February. My pain is bearable, mostly lower back pain every day which I have had for a little over a year. Was told it is mild arthritis. After two months, my eyes are finally 100%. I did wake up one morning a couple weeks ago with a sore jaw and numbness as if I had been to the dentist. I have random tingly sensations all over on occasions. Not necessarily painful, but uncomfortable. Every so often I get a sharp pinpoint of pain but not lingering.
I find myself wondering if I'm imagining some of this or if my body really IS attacking me from the inside, because that's how I feel. My skin has gotten dry and flakey, my face is breaking out, I'm absolutely exhausted all the time and I'm forgetting words and names...does it really happen this fast? I've always been healthy, this is crazy! Then I wonder if my back problems and one other previous eye infection may be associated...this is consuming me.
glad to hear it's making the early days a little easier to deal with. it is an extremely 'consume-y' time.