What I find hard for me to deal with is the fact that, every single month, I am feeling ok when, suddenly, out of nowhere, I have a large group of symptoms that appear in a matter of hours and that last days before disappearing. They arrive, they take me by surprise and they make me wonder if I am having a relapse or I am experiencing the symptoms of PML. This has happened in July, August, November and during this month and I am not sure how to take them, especially because some of them are the symptoms of PML like the vision, balance and the sense of confusion that is listed on the Tysabri information sheet that doctors and nurses give you.
I might have to get used to this new MS routine. I didn’t call anyone, I didn’t bother doctors or nurses because I knew their answer and I knew that they were probably going to tell me that what I was feeling was caused by stress and the arrival of the holidays. I didn’t feel comfortable talking to anybody about this, even if the symptoms were quite scary at times. I would feel much different if doctor Greenberg was still my doctor because I know that he wouldn’t have thought that and he would have taken me seriously.
I might have to get used to this new MS routine. I didn’t call anyone, I didn’t bother doctors or nurses because I knew their answer and I knew that they were probably going to tell me that what I was feeling was caused by stress and the arrival of the holidays. I didn’t feel comfortable talking to anybody about this, even if the symptoms were quite scary at times. I would feel much different if doctor Greenberg was still my doctor because I know that he wouldn’t have thought that and he would have taken me seriously.
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My 12th Tysabri Infusion: Month of December, 28 days later
This month, I had to take Tysabri twice (there are 13 infusions a year) and it felt like I was taking it too many times!
Going to Hopkins is always nice and I like it a lot but, this month, I felt that the 28 days passed way too fast!
The infusion went well, once again. Of course, after it, I started having pain all over my body but, this time, it went away at the end of the day before I went to bed. Usually, the pain comes the day after, but not this time.
During the month of January, I had many different episodes when I didn’t feel too good but, for some reason, when I look back at this month, I feel happy and I don’t feel like it was too bad. I felt stressed and overwhelmed by the work that I decided to put on myself and I had some new and troubling symptoms, but I feel that I am so strong and that nothing seems to scare me!
Let me explain better…In the beginning of the year, I started having acute chest pains, strong burning in the thoracic area, spasms, palpitations that got worse at night when I was lying down and irregular heart beats where one was a lot stronger than the other one…much stronger!
I lived with the symptoms for quite some time and I didn’t say anything to anyone. I do miss Dr. Greenberg, who I would have felt comfortable talking to about this, and when things seemed to get a little bit worse (I was in the car, I couldn’t breath well and I asked my husband to run and buy me an Aspirin, just in case…) I realized that I needed to go and see a cardiologist, which I did a few days later. I wasn’t scared but I was curious and I felt that there was a reason for having these symptoms…I believe that there is always a reason for everything! In fact, it was “thanks” to this problem that I went to see a cardiologist that was incredibly kind and that took the time to listen and to help and that allowed me to do the ultrasound that Dr. Zamboni does to his patients.
Were these symptoms caused by MS, by Tysabri or by CCSVI??? No one can give me an answer.
The ultrasound results shows that I have a vein in the back of my neck that doesn’t drain properly and the two of the valves in my heart don’t close well. Having a drainage problem proves Dr. Zamboni’s theory, even if no blockages were found.
I count on redoing the test at the appropriate place (Buffalo!) with the person that was trained to do this type of tests to make sure that nothing was missed. About Tysabri…well, I don’t know what to say because, except for the time when I start having a group of symptoms appear out of nowhere, I feel that I am doing pretty well with it and I have nothing to complain about. I have noticed that the symptoms apppear around my menstrual cycle. It took me some time to realize this because sometimes they come a week before my period and sometimes they come after it…so I never know what to expect! One good thing came from this: I might not think it’s PML every month now because I will assume that it’s my period that bring me more symtoms and it better be this way!
Going to Hopkins is always nice and I like it a lot but, this month, I felt that the 28 days passed way too fast!
The infusion went well, once again. Of course, after it, I started having pain all over my body but, this time, it went away at the end of the day before I went to bed. Usually, the pain comes the day after, but not this time.
During the month of January, I had many different episodes when I didn’t feel too good but, for some reason, when I look back at this month, I feel happy and I don’t feel like it was too bad. I felt stressed and overwhelmed by the work that I decided to put on myself and I had some new and troubling symptoms, but I feel that I am so strong and that nothing seems to scare me!
Let me explain better…In the beginning of the year, I started having acute chest pains, strong burning in the thoracic area, spasms, palpitations that got worse at night when I was lying down and irregular heart beats where one was a lot stronger than the other one…much stronger!
I lived with the symptoms for quite some time and I didn’t say anything to anyone. I do miss Dr. Greenberg, who I would have felt comfortable talking to about this, and when things seemed to get a little bit worse (I was in the car, I couldn’t breath well and I asked my husband to run and buy me an Aspirin, just in case…) I realized that I needed to go and see a cardiologist, which I did a few days later. I wasn’t scared but I was curious and I felt that there was a reason for having these symptoms…I believe that there is always a reason for everything! In fact, it was “thanks” to this problem that I went to see a cardiologist that was incredibly kind and that took the time to listen and to help and that allowed me to do the ultrasound that Dr. Zamboni does to his patients.
Were these symptoms caused by MS, by Tysabri or by CCSVI??? No one can give me an answer.
The ultrasound results shows that I have a vein in the back of my neck that doesn’t drain properly and the two of the valves in my heart don’t close well. Having a drainage problem proves Dr. Zamboni’s theory, even if no blockages were found.
I count on redoing the test at the appropriate place (Buffalo!) with the person that was trained to do this type of tests to make sure that nothing was missed. About Tysabri…well, I don’t know what to say because, except for the time when I start having a group of symptoms appear out of nowhere, I feel that I am doing pretty well with it and I have nothing to complain about. I have noticed that the symptoms apppear around my menstrual cycle. It took me some time to realize this because sometimes they come a week before my period and sometimes they come after it…so I never know what to expect! One good thing came from this: I might not think it’s PML every month now because I will assume that it’s my period that bring me more symtoms and it better be this way!
TM