Hi everyone...after lurking this site for almost a year, I feel it's time to introduce myself appropriately. It's a little creepy just reading everyone's stories and not telling my own. Plus, I really just need to be surrounded by others who are experiencing my own pain & frustration with this disease. Comfort is so necessary with all of what we experience and that includes being able to unload our daily aches, pains and moans & groans. My stats are:
37 years old
47 year old handsome husband
Married 12 years this May 8
7 year old beautiful, wickedly smart daughter
Love to craft (scrapbooking, sewing, home decorating...all of these have been put on hold due to my symptoms, depression, fatigue)
Christmas 2009 (Christmas Day, actually), I began having symptoms of optic neuritis, and was finally diagnosed after 3 visits to local ERs with various tests, some painful (lumbar puncture, poking of the eye, eye drops, CT scans, MRIs). I was put on solumedrol, gained a zillion pounds and was sent back home to meet with my new neurologist who would be monitoring me for MS (none of the MRIs showed lesions). Several weeks later, I finally got my vision back (after much more steroids...and much more comfort food).
Six months later, June, I was given a routine MRI and, lo & behold, there they were...4 little lesions. I was quickly given a large shopping bag of medical literature (and there I was thinking I was going to receive some little, itty, bitty pamphlets...imagine my horror! lol!) and sent off to make a decision in 3 days. Did I mention that I received this diagnosis from my doctor 2 hours before I was to meet with my lawyer to sign divorce papers?? (My husband & I reconciled & are still together, thankfully, but I can honestly say I'll never forget my complete devastation in my doctor's office). While drinking lots of margaritas with a friend that night (well-deserved, imo), I opted for Copaxone...less side effects in return for daily injections. I could handle that. I sucked it up, went on with my life, accepted my new diagnosis and tried to explain everything to my now 7 year old daughter. My husband was great, but I think we were all just learning a little at a time.
The big lesson came in November, when my hubby & I took a little trip to Mayo Clinic for a 2nd opinion. The neuro we met with came swaggering in a couple of hours late for my appointment, most likely not having reviewed my paperwork & files, and gave us the false hope that I might not even have MS at all. In fact, the lesions didn't even look like lesions at all! But, to be on the safe side, he ordered another MRI, and threw in and EMG on my right arm in which I was experiencing some major nerve pain in my shoulder. After a night of cautiously-optimistic celebration, I went in for my MRI the next morning, did my EMG and went back in for the follow-up later that afternoon. There on the screen was a rather large white lesion. Much larger than my prior lesions. He failed to mention there were NINE new lesions...I had to read that on my own after receiving my records in order to file a proper complaint against the neurologist who I met with.
After that appointment, I also noticed my lower back was hurting quite a bit, I was beginning to have the burning under my right foot and my right thigh/hamstring area was aching like the dickens. My arm pain was so intense that I had to leave work one day in tears because I couldn't use it anymore...I just couldn't type. All on my right side.
January rolled around and after having had more MRIs on the brain & c-spine in December, my dr decided to do the thoracic spine MRI based on my new leg symptoms. I worked at the university hospital where I was having the MRI so I walked over during my lunch hour and just while rounding the corner, my left leg just about gave out on me. I had to drag my leg and myself to the check-in counter and after sitting for a while, things settled down a bit and I was able to walk but I noticed significant weakness. My dr called my office that afternoon with the results (nothing seen) and I told her about my episode and she mentioned Transverse Myelitis...quickly put me on steroid treatment. By that night, my left arm was weak and in pain and I was dragging my leg. I experienced my first HUG...AWFUL! Everything just came on me like a wave...all of my pain, all of my weakness. My lower spine was in terrible pain. That was probably the worst week of my life, not knowing if I was going to lose my ability to walk completely, if I was going to get it back, WHAT?? I prepared myself for what I needed to do...
Since then, my symptoms have increased to the point where I'm on the 3200mg of Gabapentin (800 3x/day), Baclofen at night for leg spasms, Tramadol for pain at night (only), Copaxone was immediately switched in Jan to Betaseron 1.0 ml, Wellbutrin for depression, and various Tylenol products before/after my Betaseron. The medication load is ridiculous and not really helping the pain. I've had to order a cane, which I'm resisting. I have a handicap license for my car, which I refuse to hang unless I'm absolutely unable to get to the front door of the store without my cane. I feel like my body is just deteriorating.
I'm now experiencing my 2nd relapse in my legs...my right leg had been hurting this past week. Burning under the foot, burning in the hamstrings, spinal pain, hip pain, numbness...very reminiscent of my January relapse in my left leg. I called my dr and the next day, I was given another prescription for the steroid treatment (I opt for the high dose pills vs the IV). Just since yesterday, my pain has increased by leaps & bounds. It's frightening. And nobody here knows what to do.
So, now we're looking at moving to a city that has better health care options and specializes in transverse myelitis, if that's what I have in addition to the MS. I do know I have the symptoms in line w/ TM. All I know is I need someone who KNOWS what's going on with me to HELP me!
Thank you all for letting me unload here. I've gained 30 lbs since last summer on all of these meds. My self-confidence is waning. I want to be active again. I want to be sexy again. I just feel so lost in this disease and I need to climb out of it.
Trust me, there are good days....but I'm finding that my pain level is making those good days very few and far between.
I would love suggestions...I would love to hear some hopeful stories.
I am a strong believer in the Lord and have a very strong faith...it's helped me get through a lot of the pain I've been through this past year and a half (which a LOT of it isn't included in this story...someday, it will be, but not now).
Thanks for reading...and listening. And caring
37 years old
47 year old handsome husband
Married 12 years this May 8
7 year old beautiful, wickedly smart daughter
Love to craft (scrapbooking, sewing, home decorating...all of these have been put on hold due to my symptoms, depression, fatigue)
Christmas 2009 (Christmas Day, actually), I began having symptoms of optic neuritis, and was finally diagnosed after 3 visits to local ERs with various tests, some painful (lumbar puncture, poking of the eye, eye drops, CT scans, MRIs). I was put on solumedrol, gained a zillion pounds and was sent back home to meet with my new neurologist who would be monitoring me for MS (none of the MRIs showed lesions). Several weeks later, I finally got my vision back (after much more steroids...and much more comfort food).
Six months later, June, I was given a routine MRI and, lo & behold, there they were...4 little lesions. I was quickly given a large shopping bag of medical literature (and there I was thinking I was going to receive some little, itty, bitty pamphlets...imagine my horror! lol!) and sent off to make a decision in 3 days. Did I mention that I received this diagnosis from my doctor 2 hours before I was to meet with my lawyer to sign divorce papers?? (My husband & I reconciled & are still together, thankfully, but I can honestly say I'll never forget my complete devastation in my doctor's office). While drinking lots of margaritas with a friend that night (well-deserved, imo), I opted for Copaxone...less side effects in return for daily injections. I could handle that. I sucked it up, went on with my life, accepted my new diagnosis and tried to explain everything to my now 7 year old daughter. My husband was great, but I think we were all just learning a little at a time.
The big lesson came in November, when my hubby & I took a little trip to Mayo Clinic for a 2nd opinion. The neuro we met with came swaggering in a couple of hours late for my appointment, most likely not having reviewed my paperwork & files, and gave us the false hope that I might not even have MS at all. In fact, the lesions didn't even look like lesions at all! But, to be on the safe side, he ordered another MRI, and threw in and EMG on my right arm in which I was experiencing some major nerve pain in my shoulder. After a night of cautiously-optimistic celebration, I went in for my MRI the next morning, did my EMG and went back in for the follow-up later that afternoon. There on the screen was a rather large white lesion. Much larger than my prior lesions. He failed to mention there were NINE new lesions...I had to read that on my own after receiving my records in order to file a proper complaint against the neurologist who I met with.
After that appointment, I also noticed my lower back was hurting quite a bit, I was beginning to have the burning under my right foot and my right thigh/hamstring area was aching like the dickens. My arm pain was so intense that I had to leave work one day in tears because I couldn't use it anymore...I just couldn't type. All on my right side.
January rolled around and after having had more MRIs on the brain & c-spine in December, my dr decided to do the thoracic spine MRI based on my new leg symptoms. I worked at the university hospital where I was having the MRI so I walked over during my lunch hour and just while rounding the corner, my left leg just about gave out on me. I had to drag my leg and myself to the check-in counter and after sitting for a while, things settled down a bit and I was able to walk but I noticed significant weakness. My dr called my office that afternoon with the results (nothing seen) and I told her about my episode and she mentioned Transverse Myelitis...quickly put me on steroid treatment. By that night, my left arm was weak and in pain and I was dragging my leg. I experienced my first HUG...AWFUL! Everything just came on me like a wave...all of my pain, all of my weakness. My lower spine was in terrible pain. That was probably the worst week of my life, not knowing if I was going to lose my ability to walk completely, if I was going to get it back, WHAT?? I prepared myself for what I needed to do...
Since then, my symptoms have increased to the point where I'm on the 3200mg of Gabapentin (800 3x/day), Baclofen at night for leg spasms, Tramadol for pain at night (only), Copaxone was immediately switched in Jan to Betaseron 1.0 ml, Wellbutrin for depression, and various Tylenol products before/after my Betaseron. The medication load is ridiculous and not really helping the pain. I've had to order a cane, which I'm resisting. I have a handicap license for my car, which I refuse to hang unless I'm absolutely unable to get to the front door of the store without my cane. I feel like my body is just deteriorating.
I'm now experiencing my 2nd relapse in my legs...my right leg had been hurting this past week. Burning under the foot, burning in the hamstrings, spinal pain, hip pain, numbness...very reminiscent of my January relapse in my left leg. I called my dr and the next day, I was given another prescription for the steroid treatment (I opt for the high dose pills vs the IV). Just since yesterday, my pain has increased by leaps & bounds. It's frightening. And nobody here knows what to do.
So, now we're looking at moving to a city that has better health care options and specializes in transverse myelitis, if that's what I have in addition to the MS. I do know I have the symptoms in line w/ TM. All I know is I need someone who KNOWS what's going on with me to HELP me!
Thank you all for letting me unload here. I've gained 30 lbs since last summer on all of these meds. My self-confidence is waning. I want to be active again. I want to be sexy again. I just feel so lost in this disease and I need to climb out of it.
Trust me, there are good days....but I'm finding that my pain level is making those good days very few and far between.
I would love suggestions...I would love to hear some hopeful stories.
I am a strong believer in the Lord and have a very strong faith...it's helped me get through a lot of the pain I've been through this past year and a half (which a LOT of it isn't included in this story...someday, it will be, but not now). Thanks for reading...and listening. And caring
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