OK so I have MS. And honestly I don't know that much about it. Other than what I have read on the web pages recommended to me.
I know that I have Relapsing Remitting MS which I have been told is the less severe of the 2 kinds. So that is good right? We caught it early we can't cure it but we can treat it, all positive things. I can still have more children although Chris and I will have to push our timeline back a bit. We decided its more important to find a drug that works than to have another baby right away. My doctor wants to start me on Rebif. I am not thrilled at the thought of having to give myself injections 3 times a week but if that is what I have to do then I have to do it. If you have experience with this drug please let me know your thoughts. I would love to hear any and all experiences with it.
So this is the reason for this Blog. I have never blogged before so it's new to me but not an uncommon concept. I am very bad at asking for help and really being honest when something is bothering me, so I hope that this will be an outlet for me and keep me from going completely nuts. I plan to update it as often as possible but you will have to forgive me if I don't keep up with it sometimes. I do have a 20 month old to run around after. Please post any helpful, positive comments as I really don't need any more negativity right now.
That's all for now. I'll give another update when I have one.
Sunday, November 21, 2010
Now what?
So the doctor has just given me a positive diagnosis of MS and of course I totally lost it.
He was so sweet and said it's completely understandable. I was crying in his office and looking at my wonderful husband and asking myself why. Why after everything that I had been through was this happening to me, to us?
I couldn't wrap my head around it and it's still so new I can't. He gave us all the details and the appropriate answers. MS is by no means a death sentence. There are many drugs that have been shown help. With the right drug regimen there is no reason why I shouldn't live a happy normal life. But honestly the only thing that I could think about was I have MS. I thought about my beautiful baby boy and how much I love him and wanted to give him a sibling. I was happy to know that pregnancy is actually great for people with MS. You don't have any flare ups you have no symptoms at all. Still not sure why that is exactly but that explains my amazing pregnancy.
My doctor said that he estimates that I have had the disease for about 5 years. I wanted to say six since I remember an episode back in 2004 where I was blow drying my hair and my entire left side of my face went numb. I thought I had just had a stroke. So who knows how long it's been but the bottom line is that I have it and I have to do something about it.
So I have 2 options. I can lay down and say I give up and refuse to try and fight this and end up in a wheelchair or worse. Or I can take the drugs that are recommended to me and fight this with everything in me. If you know me you will know that I choose option number 2. There is no giving up.
He was so sweet and said it's completely understandable. I was crying in his office and looking at my wonderful husband and asking myself why. Why after everything that I had been through was this happening to me, to us?
I couldn't wrap my head around it and it's still so new I can't. He gave us all the details and the appropriate answers. MS is by no means a death sentence. There are many drugs that have been shown help. With the right drug regimen there is no reason why I shouldn't live a happy normal life. But honestly the only thing that I could think about was I have MS. I thought about my beautiful baby boy and how much I love him and wanted to give him a sibling. I was happy to know that pregnancy is actually great for people with MS. You don't have any flare ups you have no symptoms at all. Still not sure why that is exactly but that explains my amazing pregnancy.
My doctor said that he estimates that I have had the disease for about 5 years. I wanted to say six since I remember an episode back in 2004 where I was blow drying my hair and my entire left side of my face went numb. I thought I had just had a stroke. So who knows how long it's been but the bottom line is that I have it and I have to do something about it.
So I have 2 options. I can lay down and say I give up and refuse to try and fight this and end up in a wheelchair or worse. Or I can take the drugs that are recommended to me and fight this with everything in me. If you know me you will know that I choose option number 2. There is no giving up.
Bombshell!
So I go to see a Neurologist that my Neurosurgeon had referred me too and in preparation for this appointment I had been ordered to get and MRI and MRA scan of my Brain. To look for clotting, evidence of stroke, tumor, inflammation etc.
My first appointment with my doctor is a little nerve racking because he is the type of doctor who will not let anything slip about what he is thinking and won't make a diagnosis without all the evidence. Of course this is good but with my history I don't like waiting I want to know.
So he tells me that there is evidence in my brain MRI of inflammation. I have no idea what that means but being of the Google generation I went home and looked up possible causes. Virus, Aids, Herpes and Multiple Sclerosis. Now I have to back up again because at the beginning of this new diagnosis every person that I spoke to asked me the same question. Do you have MS? And of course I say no and they say well have you been screened for it and again my answer is no. I have never even thought about the possibility that I would have this disease so I dismiss it. Now one of the things that I have not been given at this time is the Radiologist's report of my Brain scans. My Neurosurgeon receives it at the end of our first appointment but doesn't say anything to me. He orders some blood work and we meet again a few weeks later.
In the meantime my old surgeon from Virginia is informed by his Physician's assistant of my current symptoms and that I cancelled an appointment with him because of insurance reasons. Well my doctor decides he wants to see me anyways and makes arrangements with me. I go to see him and he looks at my MRI's. He determines that it's not my neck this time. Then he looks at my Brain Scans and explains to me that I have white spots or lesions. He explains that it is a sign of MS and since I have never had a migraine in my life he said that is probably what it is. Then he shows me the report from the Radiologist. Right there in black and white "Highly suspicious for Multiple Sclerosis" I lost it. I broke down and started to cry and was completely shocked. I appreciated being told though since I was feeling like I was left in the dark with this whole thing.
The next appointment with my Neurosurgeon was a little strange. The results of my blood work showed very low levels of Vitamin D so he put me on some heavy duty vitamins. He also had a Freudian slip and said "Now with regards to this MS situation" I was like I'm sorry did you say MS situation? He back tracked and said "I'm sorry that was a slip what I meant to say was with regards to your brain situation where MS could be a cause." Give me a break really?!?He also said that he wanted to go ahead and order a spinal tap. Even though I have had countless injections and blood drawn and IV's I was still nervous about this procedure. I think deep down it was because I knew what the results were going to be.
Nonetheless we scheduled the procedure and when the day finally came I was really nervous. I was very concerned that the Dr seemed to think that the best place to put the needle was right in the middle of my fusion site. I didn't like this idea and I told him so but he is the one with the PhD so I trusted him. During the procedure however I knew that I was right. It hurt way more than I think it was supposed to and I ended up with pain radiating down my legs and in my hips. When I told him what I was feeling his response to me was "Well I don't know why that would be happening, maybe it's the way you are lying on the table" If I could have moved I would have jumped up and punched him. I was so mad and in pain and seriously I had been through enough to last me a lifetime.
But of course there is always more. I had the Spinal Tap on Monday the 18th and on Friday the 21st I went back for the results. My husband Chris came with me to hear the results. Now my doctor is not someone that I would call direct. He is very conservative and doesn't say anything too straight forward. But the day I went for the results of my test he was anything but conservative. He started by going through the things that have happened so far and why. He talked about the Brain MRI, the blood work and finally how the spinal tap is the last place you look to find evidence of MS. He looked me straight in the eye and said at this time I am able to give you a positive Diagnosis of MS.
Something New
So after everything that I had just gone through I never expected what was going to be thrown at me next.
But let me go back a little. After all the surgeries and therapy I was finally better. I was so happy. In April 2008 I finally walked down the isle, in July of 2008 I found out I was pregnant and in March 2009 we were blessed with Charlie. He is such a happy, healthy little boy. The light of my life. My pregnancy was in a word AMAZING! I was so happy and healthy I had no problems, or nausea or anything that most women experience. I wasn't even that uncomfortable. I thought it was strange but after everything that I had been through I felt I deserved it. Charlie was born in March of 2009 and the next year was amazing. He changes so much everyday and I am blessed to be able to be here with him and witness it. A few more wonderful months go by and then we come to September 2010. I hadn't been doing anything out of the ordinary just sitting on my sofa watching T.V. Charlie was down for the night and I was enjoying some me time. I noticed something strange. The thumb and pointer finger on my left hand were a little numb and tingling like when your foot falls asleep and is trying to wake up. Well I immediately thought of my neck. Sometimes even though I have had this surgery I still have complications from it. So most of the time it's positional. I changed position, put on my neck brace and decided it was nothing and went to bed. The next day things were different. It wasn't just 2 fingers it was all of them and the palm of my hand too. Well again I didn't think anything of it until it got worse. Over the next week it spread to my entire arm and then my entire left side. I really didn't know what to think now but given all my past experiences I was still thinking it was my neck.
I made an appointment with my Primary Care doctor and he agreed that it was most likely my neck and I needed an MRI. The MRI came back and did show evidence of another bulging disc in my neck. Well that was the answer right? Not really. I wasn't able to go back and see my old surgeon because of insurance problems so I went back to where I started 9 years ago. The doctor that I ended up seeing was very adamant about the fact that he didn't think what was going on this time was related to my neck. The reason for this is that by this time the numbness and tingling wasn't just my left side it included my face, neck and head. He truly believed that the problem was higher up but he ordered a CT scan just in case maybe some of the hardware from my fusion had broken off and was compressing the nerve. Well this wasn't the case and he referred me to a Neurologist who would later tell me something I never expected in a million years.
But let me go back a little. After all the surgeries and therapy I was finally better. I was so happy. In April 2008 I finally walked down the isle, in July of 2008 I found out I was pregnant and in March 2009 we were blessed with Charlie. He is such a happy, healthy little boy. The light of my life. My pregnancy was in a word AMAZING! I was so happy and healthy I had no problems, or nausea or anything that most women experience. I wasn't even that uncomfortable. I thought it was strange but after everything that I had been through I felt I deserved it. Charlie was born in March of 2009 and the next year was amazing. He changes so much everyday and I am blessed to be able to be here with him and witness it. A few more wonderful months go by and then we come to September 2010. I hadn't been doing anything out of the ordinary just sitting on my sofa watching T.V. Charlie was down for the night and I was enjoying some me time. I noticed something strange. The thumb and pointer finger on my left hand were a little numb and tingling like when your foot falls asleep and is trying to wake up. Well I immediately thought of my neck. Sometimes even though I have had this surgery I still have complications from it. So most of the time it's positional. I changed position, put on my neck brace and decided it was nothing and went to bed. The next day things were different. It wasn't just 2 fingers it was all of them and the palm of my hand too. Well again I didn't think anything of it until it got worse. Over the next week it spread to my entire arm and then my entire left side. I really didn't know what to think now but given all my past experiences I was still thinking it was my neck.
I made an appointment with my Primary Care doctor and he agreed that it was most likely my neck and I needed an MRI. The MRI came back and did show evidence of another bulging disc in my neck. Well that was the answer right? Not really. I wasn't able to go back and see my old surgeon because of insurance problems so I went back to where I started 9 years ago. The doctor that I ended up seeing was very adamant about the fact that he didn't think what was going on this time was related to my neck. The reason for this is that by this time the numbness and tingling wasn't just my left side it included my face, neck and head. He truly believed that the problem was higher up but he ordered a CT scan just in case maybe some of the hardware from my fusion had broken off and was compressing the nerve. Well this wasn't the case and he referred me to a Neurologist who would later tell me something I never expected in a million years.
The Beginning
Well I guess the beginning is the best place to start so here goes. The only way to understand the present is to start in the past.
In March of 2001 I was getting ready for work. I worked as a waitress at that time and so I was ironing my uniform. I remember that I was bent over the iron and then I twisted a little bit and couldn't move. I was frozen in so much pain I thought I would die. I lay on my bedroom floor for hours waiting till someone came home as I could not get to a phone. My father came home and found me in my room. As soon as he tried to move me and I screamed out in pain he knew that I was in trouble. I went to see an orthopedic surgeon who had treated my younger sister for a sports injury and I was told that I had severely sprained and strained my back. I was given some medicine for pain and medicine for muscle spasm. I was told to go to physical therapy and that was really hard. The pain got worse and then the numbness and burning in my legs told a different story. This wasn't just a strained back this was something else.
My doctor decided to order an MRI to take a closer look. I remember this day better than any day. I was sitting in the office with my Mom when the doctor came in. He had told us before hand that the worst case scenario would be a herniated or ruptured disc. He walked into the room looked my Mother and I in the eye and said that he had never seen this in someone my age. I didn't just have one herniated disc I had 4. I also had degenerative disc disease and spinal stenosis. He said that my MRI looked like one you would expect to see in a 60 year old person not someone who is 19. The next year was very hard. A lot of therapy and procedures that did nothing to help me some experimental and some not. I found a Neurosurgeon who suggested I go see a colleague of his in Annapolis. This led me to the man that would help me more than I ever thought possible.
Dr Thomas Ducker looked at my case and decided that he could and would help me. I was told I needed surgery to fix what was wrong. No amount of drugs and therapy was going to help I needed to have this operation. It was a multilevel laminectomy disc decompression. Basically going in and cutting off the herniated disc that was pressing on my nerves and making the spinal column wider to give me more room.In February of 2002 I had the operation. Almost 1 year since the problems started. The surgery was a success six weeks after I was better than ever and loving being back to normal. I was happy healthy got engaged to the love of my life a year later and we started planning our wedding.
Then comes the night of September 27th 2003. I decided to go out with a few of my girlfriends to a club in Baltimore, MD. We were having a great time I was the DD because I just wanted to dance and move. Around midnight the club went from basically empty to maximum capacity. You could barely move. I was standing off to the side watching the dance floor and my girlfriends were off getting another drink. I heard some commotion over to my right side and when I turned to look I was blindsided. Two bouncers had jump tackled a very large man and they all fell on top of me. Another employee of the bar ran over and pulled the men off me since they didn't know I was there. I knew I was in trouble again. I could barely move and had to be helped out of the club. Hindsight is always clearer and I should have been taken to the hospital right then but I was scared and just wanted to leave. I did go the next day and the news was not good I had re injured my back and then some. I also had a fractured tail-bone which was so painful.
I wasn't sure what to do so the first thought was to go back to my surgeon. He looked at my MRI's and determined that in his opinion I was not a candidate for surgery. I wasn't sure what to do since I knew that things were much worse this time. He suggested I try pain management and just learn to live with it. I did for a while. I took lots of drugs and went to therapy and nothing helped. I spent almost the entire year of 2004 in bed. The only thing that I had was a conversation that I had had with a Neuroradiologist who had mentioned something to me about disc replacement surgery. I hadn't heard of anything like that but I decided to look into it.
That is how I found the Dr's at the Virginia Spine Institute who would change my life in more ways than even I had imagined. I emailed the doctors about the surgery and set up appointment to go see them. At the first appointment I was told that I was not a candidate for the surgery since they only currently could do a one level replacement. I needed 4 and the US hadn't approved that yet. I was told however that I was an optimum candidate for a spinal fusion. I knew enough to know at that point that this was a big operation. The prognosis after surgery was a little scary. I would loose mobility and possibly always have pain on some level but I would be much better off than I was. This was June of 2004. I thought a lot about it and decided to go ahead with the operation.
However now there was another problem. I was having numbness and tingling in my arms and hands. A new symptom but serious enough that my doctor passed me to his colleague and more testing was done. As it turned out the accident was a lot worse than we thought because I also had a ruptured disc in my neck and that was causing me to have weakness and motor function loss in my hands. It was determined that I needed to have an operation on my neck before the lower back since it was more serious. In July of 2004 I had a one level cervical fusion with a laminectomy on 3 other levels. It took me a year to recover I was in the most pain of my life. Therapy was hard and I never thought I would be okay. 1 year and 3 months later I was back at the hospital for my lumbar fusion. October 2005 the doctors preformed my operation and 1 year after that I was back at work for the first time in 3 years. Everything was great again.
In March of 2001 I was getting ready for work. I worked as a waitress at that time and so I was ironing my uniform. I remember that I was bent over the iron and then I twisted a little bit and couldn't move. I was frozen in so much pain I thought I would die. I lay on my bedroom floor for hours waiting till someone came home as I could not get to a phone. My father came home and found me in my room. As soon as he tried to move me and I screamed out in pain he knew that I was in trouble. I went to see an orthopedic surgeon who had treated my younger sister for a sports injury and I was told that I had severely sprained and strained my back. I was given some medicine for pain and medicine for muscle spasm. I was told to go to physical therapy and that was really hard. The pain got worse and then the numbness and burning in my legs told a different story. This wasn't just a strained back this was something else.
My doctor decided to order an MRI to take a closer look. I remember this day better than any day. I was sitting in the office with my Mom when the doctor came in. He had told us before hand that the worst case scenario would be a herniated or ruptured disc. He walked into the room looked my Mother and I in the eye and said that he had never seen this in someone my age. I didn't just have one herniated disc I had 4. I also had degenerative disc disease and spinal stenosis. He said that my MRI looked like one you would expect to see in a 60 year old person not someone who is 19. The next year was very hard. A lot of therapy and procedures that did nothing to help me some experimental and some not. I found a Neurosurgeon who suggested I go see a colleague of his in Annapolis. This led me to the man that would help me more than I ever thought possible.
Dr Thomas Ducker looked at my case and decided that he could and would help me. I was told I needed surgery to fix what was wrong. No amount of drugs and therapy was going to help I needed to have this operation. It was a multilevel laminectomy disc decompression. Basically going in and cutting off the herniated disc that was pressing on my nerves and making the spinal column wider to give me more room.In February of 2002 I had the operation. Almost 1 year since the problems started. The surgery was a success six weeks after I was better than ever and loving being back to normal. I was happy healthy got engaged to the love of my life a year later and we started planning our wedding.
Then comes the night of September 27th 2003. I decided to go out with a few of my girlfriends to a club in Baltimore, MD. We were having a great time I was the DD because I just wanted to dance and move. Around midnight the club went from basically empty to maximum capacity. You could barely move. I was standing off to the side watching the dance floor and my girlfriends were off getting another drink. I heard some commotion over to my right side and when I turned to look I was blindsided. Two bouncers had jump tackled a very large man and they all fell on top of me. Another employee of the bar ran over and pulled the men off me since they didn't know I was there. I knew I was in trouble again. I could barely move and had to be helped out of the club. Hindsight is always clearer and I should have been taken to the hospital right then but I was scared and just wanted to leave. I did go the next day and the news was not good I had re injured my back and then some. I also had a fractured tail-bone which was so painful.
I wasn't sure what to do so the first thought was to go back to my surgeon. He looked at my MRI's and determined that in his opinion I was not a candidate for surgery. I wasn't sure what to do since I knew that things were much worse this time. He suggested I try pain management and just learn to live with it. I did for a while. I took lots of drugs and went to therapy and nothing helped. I spent almost the entire year of 2004 in bed. The only thing that I had was a conversation that I had had with a Neuroradiologist who had mentioned something to me about disc replacement surgery. I hadn't heard of anything like that but I decided to look into it.
That is how I found the Dr's at the Virginia Spine Institute who would change my life in more ways than even I had imagined. I emailed the doctors about the surgery and set up appointment to go see them. At the first appointment I was told that I was not a candidate for the surgery since they only currently could do a one level replacement. I needed 4 and the US hadn't approved that yet. I was told however that I was an optimum candidate for a spinal fusion. I knew enough to know at that point that this was a big operation. The prognosis after surgery was a little scary. I would loose mobility and possibly always have pain on some level but I would be much better off than I was. This was June of 2004. I thought a lot about it and decided to go ahead with the operation.
However now there was another problem. I was having numbness and tingling in my arms and hands. A new symptom but serious enough that my doctor passed me to his colleague and more testing was done. As it turned out the accident was a lot worse than we thought because I also had a ruptured disc in my neck and that was causing me to have weakness and motor function loss in my hands. It was determined that I needed to have an operation on my neck before the lower back since it was more serious. In July of 2004 I had a one level cervical fusion with a laminectomy on 3 other levels. It took me a year to recover I was in the most pain of my life. Therapy was hard and I never thought I would be okay. 1 year and 3 months later I was back at the hospital for my lumbar fusion. October 2005 the doctors preformed my operation and 1 year after that I was back at work for the first time in 3 years. Everything was great again.
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