Today I woke up and CHOSE to have a good day! Last night we watched The Secret, it's a DVD that was passed on to me by the same special person that encouraged me to start this blog. If you haven't seen it, you need to. It's a video for everyone! The Secret has been passed on for centuries and centuries. It was even used by Plato, Newton, Einstein, Shakespeare, Beethoven, and the list goes on. After watching it I felt very inspired, encouraged, and optimistic. You have to make your own conclusions after watching it. Not everyone understands it or interprets it the same. Try not to get too caught up in the scientific aspect of it and don't take it too literally. I took it to be more of a spiritual and positive message that already existed in my mind, but now I know how to apply it to my everday life. Okay, I'll stop talking about it now and just let you watch it for yourself. Here's the official website of The Secret movie http://www.thesecret.tv/home.html. Enjoy!
Let me know after you watch it. I'd like to know what you thought about it.
Friday, March 30, 2007
Thursday, March 29, 2007
Why I started this blog...
The purpose of this blog is to keep my family and friends updated on my health and also to increase the awareness of MS. Until this whole ordeal started, I knew very little about MS. Now that I've done all of my research I realize how big of an effect this disease has on so many people, not only the people with MS, but their families and friends as well. Since I was diagnosed, I feel like I have some sort of calling to increase the awareness of Multiple Sclerosis. I'm not sure yet exactly what I'm supposed to do, but I think this blog is a great start. I also plan to participate in a couple of walks in the fall....I'll keep you posted on those dates and locations, so you can walk too!
I'm hoping that maybe someone with MS or someone newly diagnosed with MS may come across my blog too. I had the pleasure of meeting a fellow patient at one of my doctor's offices who is my same age, 25, and was diagnosed with MS in September of 2006. We talked a little in the waiting room about our new experiences, symptoms, emotions, etc. She gave me her phone number and I called her a few days later. Just talking to someone else with the same disease as me helped SO MUCH! Not to mention, her symptoms were a lot worse than mine, so I quickly realized I could be a lot worse off and should be thankful for making just about a complete recovery from my first attack. (I do still deal with the off & on tingling in my legs when walking or when exposed to heat or when bending my neck down towards my chest, but it seems to be less and less every week.) Anyway, back to my mentors.....I also got in touch with another woman who is 30 and has had MS for 10 years. Again, talking to her made me feel more optimistic and even relieved to know this isn't the end of my life. Both of these girls I talked to were so bubbly and sweet. I really do thank them for taking the time to talk to me. I hope one day I can return the same favor for someone else.
Even though my family is so supportive and understanding, they still don't truly know what I am going through. But, these two girls do and so do the other 400,000 Americans with MS. So, my point is that hopefully this blog will reach out to other MS patients or even friends and family of MS patients and help them in some way.
Please feel free to comment on my blog, if you have any questions or thoughts. I'll be keeping you updated on how I am, as well as any new developments. For now, I'm just getting used to having good days and bad days, lately I have more good than bad:) Some days I have energy, some days I deal with fatigue. My main goal now is to keep on going, but to also listen to my body. I'll be blogging soon about starting the injections....stay tuned!
I'm hoping that maybe someone with MS or someone newly diagnosed with MS may come across my blog too. I had the pleasure of meeting a fellow patient at one of my doctor's offices who is my same age, 25, and was diagnosed with MS in September of 2006. We talked a little in the waiting room about our new experiences, symptoms, emotions, etc. She gave me her phone number and I called her a few days later. Just talking to someone else with the same disease as me helped SO MUCH! Not to mention, her symptoms were a lot worse than mine, so I quickly realized I could be a lot worse off and should be thankful for making just about a complete recovery from my first attack. (I do still deal with the off & on tingling in my legs when walking or when exposed to heat or when bending my neck down towards my chest, but it seems to be less and less every week.) Anyway, back to my mentors.....I also got in touch with another woman who is 30 and has had MS for 10 years. Again, talking to her made me feel more optimistic and even relieved to know this isn't the end of my life. Both of these girls I talked to were so bubbly and sweet. I really do thank them for taking the time to talk to me. I hope one day I can return the same favor for someone else.
Even though my family is so supportive and understanding, they still don't truly know what I am going through. But, these two girls do and so do the other 400,000 Americans with MS. So, my point is that hopefully this blog will reach out to other MS patients or even friends and family of MS patients and help them in some way.
Please feel free to comment on my blog, if you have any questions or thoughts. I'll be keeping you updated on how I am, as well as any new developments. For now, I'm just getting used to having good days and bad days, lately I have more good than bad:) Some days I have energy, some days I deal with fatigue. My main goal now is to keep on going, but to also listen to my body. I'll be blogging soon about starting the injections....stay tuned!
Wednesday, March 28, 2007
How my journey began...
Okay, here goes....I'm not really sure how this whole blog thing works yet, but I'm giving it a try. A very special person suggested I create a blog to keep track of my new journey I've embarked on....LIVING with Multiple Sclerosis.
The Beginning - November 20, 2006
I guess I'll start with a brief (well, it won't seem brief, but it really is compared to what I've been through) description of how it all started. I've been completely healthy my entire life until November 20, 2006. I went to bed that Monday night and noticed my last two toes on my right foot were numb. When I woke up the next morning my body was completely numb from the waist down. I knew if something was touching my leg, but I couldn't really feel it....kind of like when you have dental work done and your cheeks and mouth feel numb. I also couldn't feel heat or cold. I could walk, but I had to do it a lot slower and more carefully because I felt very uncoordinated and off balance. I was pretty worried, but thought maybe I had a herniated disc or something that was applying pressure to a nerve in my lumbar spine. I thought, well luckily I work in an office of orthopedic surgeons, I'll just have one of them check out my back. That was on Wednesday, the day before Thanksgiving. Unfortunately, my x-rays and MRI of the lumbar spine were completely normal. At the time I was thinking of how terrible it would be to have a disc problem at such a young age, but now I realize that would have been a good diagnosis compared to the real one. The orthopedist told me if the numbness wasn't gone by Monday, once we returned from the Thanksgiving holiday, then I should see a neurologist. This really worried me because my mom had to see a neurologist several years ago to have testing done for Multiple Sclerosis (MS). She was having tingling in her legs for a while. In the end they found she has a B-12 deficiency, so she has to take an injection of B-12 once a week. Well, she's supposed to take it once a week...MOM!! So, of course the letters MS were constantly in the back of my head.
The Primary Care Physician - November 27, 2006
The Monday after Thanksgiving I visited my primary care physician. He was worried once he heard all of my symptoms and those same two letters, MS, popped in his head. He had a great concern for me because his mother has MS and is now confined to a wheel chair because back when she was diagnosed there were no drugs to slow the progression of the disease. So, he sent me for an MRI of the entire spine and set up an appointment with the neurologist.
The First Neurologist - December 6, 2006
The neurologist showed me my MRI films and explained the findings. They found 2 lesions or plaques in my cervical spine, which is one of the factors in diagnosing MS (lesions on the spinal cord and/or brain). They also found a syrnx in my cervical and thoracic spinal cord, called syringomyelia. As far as the lesions go, he wanted to do a MRI of the brain to see if there were any lesions there and then he wanted to do a spinal tap to check the fluid for oligoclonal bands (which are linked to MS). As for the syrinx, he felt like I have had it my entire life and just never knew about it. He just wanted to keep an eye on it to make sure it doesn't expand. If the syrinx were to expand it could apply pressure to the nerves and cause permanent paralysis. I've seen two neurosurgeons to get an opinion on whether or not the syrinx needed to be removed or drained and the answer was no, not at this time. I'll just need to have periodic MRI's done for the rest of my life to monitor it.
I had the brain MRI done, there were luckily no lesions found. I then had the spinal tap done and have been traumatized ever since. The neurologist that did the spinal tap had an incredibly difficult time, which caused me an incredible amount of pain and torture. I won't go into too many details since some of you reading this may have to have a spinal tap at some point in your life. As if the spinal tap wasn't enough, I had to go back to the hospital three days later to have a blood patch done because the spinal fluid was leaking from the MULTIPLE punctures done during the spinal tap. The leaking spinal fluid was causing me the worst headache you can imagine... my younger sister, Mel, can relate (she had the same thing happen after her spinal tap last year). But, the headache stopped almost immediately after the blood patch! It took me about 2 months to fully recover from the procedures. I couldn't even lift a gallon of milk for 2 months because of the pain and pressure in my lower back. It's still to this day sensitive to touch. The results of the spinal tap showed one oligoclonal band, which is another one of the three factors used to diagnose MS. However, this neurologist didn't diagnose me with MS because I didn't have any lesions in my brain. He diagnosed me with transverse myelitis. He wanted to wait and see what happened in the future. He said if I have any more episodes to call him. Well, obviously I wasn't satisfied with this answer. Why wait if I have two factors pointing to MS? The next episode could be a lot worse.
The Second Neurologist - December 27, 2006
My legs were still partially numb, but I could actually feel some areas again....I decided to get a second opinion. The second neurologist wasn't able to give me a diagnosis. He suggested I see a neurologist in the Medical Center that specializes in MS. So, on to the next doctor.
The Third Neurologist - January 18, 2007
At this point I could feel my legs again completely. By then I had tingling whenever I walked, was exposed to heat (showers, etc.), or when I bent my head down towards my chest. The neurologist we saw this time was not the MS specialist we were supposed to see....go figure, they had the same name! But, we found out the MS specialist wasn't on my insurance plan anyway, so we kept the appointment with the non-MS specialist. This guy sent me for 3 different evoked potential tests to check the response times of my nerves. I also had to see a neuro-opthamologist to have more tests done to check out my optic nerve, etc.
Follow Up Appointment with Third Neurologist - February 22, 2007
All of the evoked potentials came back normal, as well as the eye tests other than my eye disease, Pars Planits (inflammation of the retina), I've had since 2001. So, we got the dredded news that this doctor wanted to start treatment for MS, but he never would actually come out and say I have MS. He just said he has enough abnormal results (MRI reports and spinal tap) to start treatment. This was a little disturbing, not to mention we didn't feel 100% comfortable with this doctor in the first place. He was a little on the odd side, even for a neurologist. He just gave us a few pamphlets on each drug and basically said pick one. I left there feeling kind of numb and confused. Did I have MS or not? This leads us to the fourth and final neurologist....bare with me, I know this is becoming a novel:)
The Best Neurologist EVER - March 16, 2007
We met with one of the top neurologists, he's actually the medical director of the Maxine Mesinger MS Clinic in the Medical Center. Talk about BRILLIANT! I absolutley loved him! He was personable, funny, sincere, and he explained things very clearly. He did officially diagnose me with Multiple Sclerosis, which we luckily caught in the early stages. He does want to start treatment, he recommended two different drugs, both are low doses compared to the other two MS drugs. So he sent me home with these really cool packets with DVD's to watch and decide which one was best for me. All MS treatments are for the rest of your life. There is still no cure for MS, but the purpose of the drug is to slow the progression of the disease and decrease the amount of exacerbations / attacks. One is an intramuscular injection one time a week with a fairly large needle, but the side effects include flu-like symptoms. The other one is once a day with a much smaller needle and an auto-injector. This injection only goes under the skin and there are usually no side effects. So, after a lot of back and forth stress, I finally chose the smaller needle under the skin....Copaxone. I should be getting a call by Friday or Monday to set up a time to have a nurse come out to my house to train me on the injection. I'll be sure to keep you updated on how that goes....OUCH:( I'm really nervous, so please keep me in your prayers!
PS-I realized after reading this that I say "I" alot, but every single I should be "WE" because I did not go through this alone for one minute. I have the most amazingly supportive husband who went to every single doctor's appointment with me and rode with me the entire time on this emotional rollercoaster! I couldn't have done this without him or my family and friends. I am so very blessed to have such awesome and loving family and friends. I thank God for them every day. I love you guys:)!
The Beginning - November 20, 2006
I guess I'll start with a brief (well, it won't seem brief, but it really is compared to what I've been through) description of how it all started. I've been completely healthy my entire life until November 20, 2006. I went to bed that Monday night and noticed my last two toes on my right foot were numb. When I woke up the next morning my body was completely numb from the waist down. I knew if something was touching my leg, but I couldn't really feel it....kind of like when you have dental work done and your cheeks and mouth feel numb. I also couldn't feel heat or cold. I could walk, but I had to do it a lot slower and more carefully because I felt very uncoordinated and off balance. I was pretty worried, but thought maybe I had a herniated disc or something that was applying pressure to a nerve in my lumbar spine. I thought, well luckily I work in an office of orthopedic surgeons, I'll just have one of them check out my back. That was on Wednesday, the day before Thanksgiving. Unfortunately, my x-rays and MRI of the lumbar spine were completely normal. At the time I was thinking of how terrible it would be to have a disc problem at such a young age, but now I realize that would have been a good diagnosis compared to the real one. The orthopedist told me if the numbness wasn't gone by Monday, once we returned from the Thanksgiving holiday, then I should see a neurologist. This really worried me because my mom had to see a neurologist several years ago to have testing done for Multiple Sclerosis (MS). She was having tingling in her legs for a while. In the end they found she has a B-12 deficiency, so she has to take an injection of B-12 once a week. Well, she's supposed to take it once a week...MOM!! So, of course the letters MS were constantly in the back of my head.
The Primary Care Physician - November 27, 2006
The Monday after Thanksgiving I visited my primary care physician. He was worried once he heard all of my symptoms and those same two letters, MS, popped in his head. He had a great concern for me because his mother has MS and is now confined to a wheel chair because back when she was diagnosed there were no drugs to slow the progression of the disease. So, he sent me for an MRI of the entire spine and set up an appointment with the neurologist.
The First Neurologist - December 6, 2006
The neurologist showed me my MRI films and explained the findings. They found 2 lesions or plaques in my cervical spine, which is one of the factors in diagnosing MS (lesions on the spinal cord and/or brain). They also found a syrnx in my cervical and thoracic spinal cord, called syringomyelia. As far as the lesions go, he wanted to do a MRI of the brain to see if there were any lesions there and then he wanted to do a spinal tap to check the fluid for oligoclonal bands (which are linked to MS). As for the syrinx, he felt like I have had it my entire life and just never knew about it. He just wanted to keep an eye on it to make sure it doesn't expand. If the syrinx were to expand it could apply pressure to the nerves and cause permanent paralysis. I've seen two neurosurgeons to get an opinion on whether or not the syrinx needed to be removed or drained and the answer was no, not at this time. I'll just need to have periodic MRI's done for the rest of my life to monitor it.
I had the brain MRI done, there were luckily no lesions found. I then had the spinal tap done and have been traumatized ever since. The neurologist that did the spinal tap had an incredibly difficult time, which caused me an incredible amount of pain and torture. I won't go into too many details since some of you reading this may have to have a spinal tap at some point in your life. As if the spinal tap wasn't enough, I had to go back to the hospital three days later to have a blood patch done because the spinal fluid was leaking from the MULTIPLE punctures done during the spinal tap. The leaking spinal fluid was causing me the worst headache you can imagine... my younger sister, Mel, can relate (she had the same thing happen after her spinal tap last year). But, the headache stopped almost immediately after the blood patch! It took me about 2 months to fully recover from the procedures. I couldn't even lift a gallon of milk for 2 months because of the pain and pressure in my lower back. It's still to this day sensitive to touch. The results of the spinal tap showed one oligoclonal band, which is another one of the three factors used to diagnose MS. However, this neurologist didn't diagnose me with MS because I didn't have any lesions in my brain. He diagnosed me with transverse myelitis. He wanted to wait and see what happened in the future. He said if I have any more episodes to call him. Well, obviously I wasn't satisfied with this answer. Why wait if I have two factors pointing to MS? The next episode could be a lot worse.
The Second Neurologist - December 27, 2006
My legs were still partially numb, but I could actually feel some areas again....I decided to get a second opinion. The second neurologist wasn't able to give me a diagnosis. He suggested I see a neurologist in the Medical Center that specializes in MS. So, on to the next doctor.
The Third Neurologist - January 18, 2007
At this point I could feel my legs again completely. By then I had tingling whenever I walked, was exposed to heat (showers, etc.), or when I bent my head down towards my chest. The neurologist we saw this time was not the MS specialist we were supposed to see....go figure, they had the same name! But, we found out the MS specialist wasn't on my insurance plan anyway, so we kept the appointment with the non-MS specialist. This guy sent me for 3 different evoked potential tests to check the response times of my nerves. I also had to see a neuro-opthamologist to have more tests done to check out my optic nerve, etc.
Follow Up Appointment with Third Neurologist - February 22, 2007
All of the evoked potentials came back normal, as well as the eye tests other than my eye disease, Pars Planits (inflammation of the retina), I've had since 2001. So, we got the dredded news that this doctor wanted to start treatment for MS, but he never would actually come out and say I have MS. He just said he has enough abnormal results (MRI reports and spinal tap) to start treatment. This was a little disturbing, not to mention we didn't feel 100% comfortable with this doctor in the first place. He was a little on the odd side, even for a neurologist. He just gave us a few pamphlets on each drug and basically said pick one. I left there feeling kind of numb and confused. Did I have MS or not? This leads us to the fourth and final neurologist....bare with me, I know this is becoming a novel:)
The Best Neurologist EVER - March 16, 2007
We met with one of the top neurologists, he's actually the medical director of the Maxine Mesinger MS Clinic in the Medical Center. Talk about BRILLIANT! I absolutley loved him! He was personable, funny, sincere, and he explained things very clearly. He did officially diagnose me with Multiple Sclerosis, which we luckily caught in the early stages. He does want to start treatment, he recommended two different drugs, both are low doses compared to the other two MS drugs. So he sent me home with these really cool packets with DVD's to watch and decide which one was best for me. All MS treatments are for the rest of your life. There is still no cure for MS, but the purpose of the drug is to slow the progression of the disease and decrease the amount of exacerbations / attacks. One is an intramuscular injection one time a week with a fairly large needle, but the side effects include flu-like symptoms. The other one is once a day with a much smaller needle and an auto-injector. This injection only goes under the skin and there are usually no side effects. So, after a lot of back and forth stress, I finally chose the smaller needle under the skin....Copaxone. I should be getting a call by Friday or Monday to set up a time to have a nurse come out to my house to train me on the injection. I'll be sure to keep you updated on how that goes....OUCH:( I'm really nervous, so please keep me in your prayers!
PS-I realized after reading this that I say "I" alot, but every single I should be "WE" because I did not go through this alone for one minute. I have the most amazingly supportive husband who went to every single doctor's appointment with me and rode with me the entire time on this emotional rollercoaster! I couldn't have done this without him or my family and friends. I am so very blessed to have such awesome and loving family and friends. I thank God for them every day. I love you guys:)!
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