Monday June 29, 2009 - So far the injections are going well. On Friday a few hours after the first injection my legs were achy. Last night I did my injection right before bed so I slept through any side effects I may have had. I have started out at a very low dose and it will be six weeks before I am on the full dose. Hopefully I will continue to tolerate the medication well.
The only symptoms I am battling right now are fatigue and my left eye is still hurting. MS fatigue is like no other. Some days after only being up for a few hours I physically can't go anymore, I have to lay down and take a nap. As far as the eye pain goes nothing is helping. I think I will wait a few more days and then call my neurologist back. I really don't want to have another MRI right now but if we can't figure out why I am in pain I guess I will not have a choice. I hope you all have a great week.
Amanda
First Injection Done!
Friday June 26, 2009 - My training nurse came out today to show me how to do my injections. It went very well. She said I was fast. I am so glad to have that part over. I am hoping I don't have any side effects but it is still too early to tell. My next injection will be on Sunday on my own. We will see how it goes. I hope everyone has a great weekend!
Amanda
Amanda
Day of Appointments
Tuesday June 23, 2009 - I went to see the ophthalmologist today about the pain behind my left eye. After several tests he could not determine what is causing the pain. My optic nerve is not inflamed. But when I had optic neuritis in my right eye that optic nerve was not inflamed either. He did go ahead and do the visual field test in both eyes and I do, in fact, have some blind spots in my right eye. Also, the vision in my right eye has gotten worse since last week. He said he sees people with optic neuritis have fluctuations in their vision.
After seeing the ophthalmologist I went to the neurologist to see the nurse. She was prepared to start IV steroids today but since we don't have an optic neuritis diagnosis there is no reason for steroids at this point. I was given the option to do another MRI or wait and see what happens with my left eye. I chose to wait and see. I am not in the mood for another MRI right now. So she gave me pain meds to help me sleep at night.
While I was with the nurse I asked her several questions about symptoms I have been having. One is tingling in my left arm and she told me that it may be caused by the small disc bulge I have in my spine that I did not know about. Also, I have been dizzy and very tired. Basically she said I have to stay out of the heat because heat makes all my nerves that have been affected by the disease short circuit. I also asked her to clarify the diagnosis of CIS/MS since my spinal scan showed disease. Her answer is basically the way I have been looking at the situation. I have MS but because of timing they can't clinically say that. She said that was crap. They should be able to just say it is MS. But she said everything I am going through and all symptoms are probably MS. So I have MS but my file says CIS. Confused?;)
I also went in to have baseline blood work today. Of course my veins did not cooperate, so I got stuck twice by two different people. Story of my life. I will start my injections on Friday and will go back to see the neurologist two weeks after that for blood work and to make sure I am doing ok on the medication.
Amanda
After seeing the ophthalmologist I went to the neurologist to see the nurse. She was prepared to start IV steroids today but since we don't have an optic neuritis diagnosis there is no reason for steroids at this point. I was given the option to do another MRI or wait and see what happens with my left eye. I chose to wait and see. I am not in the mood for another MRI right now. So she gave me pain meds to help me sleep at night.
While I was with the nurse I asked her several questions about symptoms I have been having. One is tingling in my left arm and she told me that it may be caused by the small disc bulge I have in my spine that I did not know about. Also, I have been dizzy and very tired. Basically she said I have to stay out of the heat because heat makes all my nerves that have been affected by the disease short circuit. I also asked her to clarify the diagnosis of CIS/MS since my spinal scan showed disease. Her answer is basically the way I have been looking at the situation. I have MS but because of timing they can't clinically say that. She said that was crap. They should be able to just say it is MS. But she said everything I am going through and all symptoms are probably MS. So I have MS but my file says CIS. Confused?;)
I also went in to have baseline blood work today. Of course my veins did not cooperate, so I got stuck twice by two different people. Story of my life. I will start my injections on Friday and will go back to see the neurologist two weeks after that for blood work and to make sure I am doing ok on the medication.
Amanda
Pain in the left eye
Monday June 22, 2009 - Well, I have had pain in my left eye since Thursday evening. I chose to try to ignore it. By this morning the pain was worse. I have not had any vision issues but figured I better call the doctor. So I called the ophthalmologist first to schedule an appointment with him. He is in surgery today so I could not get in until tomorrow afternoon. After I called and made that appointment I figured I better check in with the neurologist. I talked to his nurse and told her what was going on. She figures it is optic neuritis, which is what I am thinking as well. So I have an appointment with her tomorrow after the appointment with the ophthalmologist to start IV steroids if it is, in fact, optic neuritis.
Amanda
Amanda
Medication on it's way, finally!
Saturday June 20, 2009 - Insurance called me this morning to confirm delivery of my medication. They are shipping it out Monday and it should be here Tuesday. I sure hope we are over this hump.
Amanda
Amanda
Still Waiting. Really?!?!
Thursday June 18, 2009 - I thought I had my medication on the way last Thursday, boy was I wrong. The company that makes the medication I will be on has a division that works with insurance and gets everything taken care of.(BetaPlus) BetaPlus called me last Thursday and got all my information for insurance and called me back and told me that insurance had approved everything and that insurance would call me early this week to finalize everything. Well I didn't hear from insurance on Monday or Tuesday so I was going to call them on Wednesday to figure out what the hold up was. Before I had a chance to call insurance my Beta nurse, yes I have my very own nurse that I can call anytime day or night, called and asked me if I had received my training kit and I told her yes and then she asked if I had my medication and I said no. She seemed a little surprised and told me to call Aetna pharmacy. I will be getting my medication shipped to me from Aetna pharmacy. So I called the pharmacy and they told me they had no information or prescription for me. WHAT? It has been a week! So I called Beta back and they called insurance back and got everything resolved, so I thought. I called insurance today to make sure everything was a go and once again they told me they had no information on me. By this point I am getting very irritated. So the guy at Aetna pharmacy asked me for my doctor's phone number and Beta's number. He put me on hold for awhile and came back and said that Beta was verbally giving the pharmacist my prescription and that someone from Aetna would call back in 2-4 hours to get more information from me and then I would hear from them again in 24-48 to confirm shipment. An hour later, Aetna called me to get the info they needed and told me the same about getting a call in 24 -48 hours. So we will see. Third time is the charm right?
Amanda
Amanda
Ophthalmologist Appointment
Tuesday June 16, 2009 - Today I had an appointment with my ophthalmologist. I have not seen him in two weeks so of course my vision has improved since I saw him last. He is very happy with my progress. I am still not at 100% but much better. He did say that I have a spot on my optic nerve but he is not concerned with it right now. My pupil is still not responding the way it should so hopefully that will get better with time. I will see him again in a month and he will do a visual field test to see where my blind spots are and we will discuss driving. At that time he will also see if he can correct my vision anymore. I did read an article recently about optic neuritis and it said most people do not regain all of their vision. My fear now is me getting it in the other eye.
Amanda
Amanda
Now we are getting somewhere, I hope
Wednesday June 10, 2009 - I heard from my neurologist this afternoon about my MRI. When they did the scans they broke the spine up into two sections; upper and lower. The lower portion of my spine is clear of disease, but there is a very small spot on my upper spine indicating demyelinating disease. He said this is the best abnormal result I could have. So in all I have 11 non-active lesions in my brain and spine. Basically, this means that I still have the diagnosis of clinically isolated syndrome until I have another occurrence or a new lesion appears. The multiple in multiple sclerosis means there has to be evidence of multiple events and since there is no way of seeing when my lesions occurred they can't consider it multiple even though there are so many. I discussed medication options with the neurologist today and he is submitting the information to insurance to get the ball rolling. Once insurance has approved it the pharmaceutical company will send out a trained nurse to show me how to do my injections. YIPPEE!! The medication I have chosen is an injection that I will administer myself every other day. Once I am on the medication for two weeks I will go back to the neurologist to see how I am doing.
*One question I keep getting about medication is how long will I have to do injections? I will have to give myself injections until the FDA approves a pill for MS treatment or there is a cure for MS. So I will be on MS treatment until there is a cure.
Amanda
*One question I keep getting about medication is how long will I have to do injections? I will have to give myself injections until the FDA approves a pill for MS treatment or there is a cure for MS. So I will be on MS treatment until there is a cure.
Amanda
So nice to drive yourself
Tuesday June 9, 2009 - I drove today for the first time in two and half weeks! I had not heard from the neurologist still about my MRI or medication so I decided to call his office. They told me he was out for the day and I would probably not hear anything until Wednesday. UGH!! We took Emily to he dress rehearsal for her recital and Dylan had his first soccer practice. It was nice to get out and act like normal people. When we got home we had a message form the neurologist to call him in the morning with a good time for him to call. I can't believe I missed his call.
Amanda
Amanda
Waiting Again
Friday June 5, 2009 - I did not hear about my MRI on Thursday or Friday or hear from the doctor about starting my medication. All this waiting is getting very old.
Amanda
Amanda
MRI of Spine
Wednesday June 3, 2009 - Well, I went in for the spinal MRI this afternoon. They told me I would be there about two hours. I went to a different location for this MRI than the one I had last week. So I ended up with new people and a different machine. This machine was awful! I felt even more confined than last week. I ended up having a panic attack in the middle of all the scans and when they pulled me out they told me I could not get up. I ended up being in the MRI machine for an hour and a half. It was awful and exhausting. I will be asking for some kind of sedation for the next MRI!
I was told I would have my results no later than Friday.
Amanda
I was told I would have my results no later than Friday.
Amanda
Neurologist Visit
Tuesday June 2, 2009 - I had my appointment with the neurologist today and we were there for almost three hours. What it boils down to is that without two or more occurrences they can't diagnose me with MS. It is called clinically isolated syndrome.
http://www.nationalmssociety.org/about-multiple-sclerosis/diagnosing-ms/cis/index.aspx
The MRI did find about 10 lesions on my brain that are all old or nonactive. (No black holes, thankfully) Since I have never had an MRI before, there is no way of knowing when the lesions occurred or if they happened at the same time. With the MRI, my age, gender and other aspects; I am at high risk for being diagnosed with MS in the future. When that might be; no one knows. I do have to go in for another MRI of my spinal cord to make sure I don't have any lesions there. He said my reflexes are a little brisk, meaning a little more than they should be. (What he would see in an MS patient.) After the MRI I will have blood work done. Between now and probably Friday I have a lot of research to do on medications. I will start treatment as an MS patient would. Basically, we shouldn't wait until I have another occurrence and more damage to my brain. He is having me look at four different options. Three are injections that are FDA approved (all MS treatment that is FDA approved is injection) and one is a pill that is a clinical trial. I have a lot to think about. So basically, I will be on medication and have routine MRI's the rest of my life or until they find a cure for MS.
Jerry and I both really like my neurologist. He specializes in MS so he knows his stuff. I think he put Jerry at ease today; which helps. Thank you to everyone for your thoughts and prayers. This has been a very hard time for all of us and I know we are ready to move forward and take it a day at a time.
Amanda
http://www.nationalmssociety.org/about-multiple-sclerosis/diagnosing-ms/cis/index.aspx
The MRI did find about 10 lesions on my brain that are all old or nonactive. (No black holes, thankfully) Since I have never had an MRI before, there is no way of knowing when the lesions occurred or if they happened at the same time. With the MRI, my age, gender and other aspects; I am at high risk for being diagnosed with MS in the future. When that might be; no one knows. I do have to go in for another MRI of my spinal cord to make sure I don't have any lesions there. He said my reflexes are a little brisk, meaning a little more than they should be. (What he would see in an MS patient.) After the MRI I will have blood work done. Between now and probably Friday I have a lot of research to do on medications. I will start treatment as an MS patient would. Basically, we shouldn't wait until I have another occurrence and more damage to my brain. He is having me look at four different options. Three are injections that are FDA approved (all MS treatment that is FDA approved is injection) and one is a pill that is a clinical trial. I have a lot to think about. So basically, I will be on medication and have routine MRI's the rest of my life or until they find a cure for MS.
Jerry and I both really like my neurologist. He specializes in MS so he knows his stuff. I think he put Jerry at ease today; which helps. Thank you to everyone for your thoughts and prayers. This has been a very hard time for all of us and I know we are ready to move forward and take it a day at a time.
Amanda
And More Waiting
Monday June 1, 2009 - By afternoon I still had not heard from the neurologist's office so I decided to call. After lots of run around and waiting I finally have an appointment set for tomorrow morning. I am so tired of not know what is going and waiting.
Amanda
Amanda
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