Hello I am 40 years old and was diagnosed with MS when I was 26. I started Rebif a few months after my diagnosis.
When I was first diagnosed my neurologist told us to find out what we could about the C.R.A.B drugs and he would see me in a month and we would decide which one I would do. Tysabri had come out but was more of a second line at that time. It had come out, been recalled, and brought back out under the Touch program.
I did the Rebif for five years. Then when we went to my neurologist appointment after a recent MRI he said the Rebif was not working anymore so we would have to make a decision about another treatment.
So now my neurologist was not being proactive enough to make my stepmother happy because I was steadily declining. I was not declining as bad as she said, but I was declining.
So she decided we needed a new neurologist and tried to make an appointment for me at the Shepherd Center. They would not let her make my appointment since I was old enough nto make my own decisions.
So I started the process of getting an appointment at the Shepherd Center. I called and tried to get an appointment with one specific Dr. I was told I would have to wait four months so I said okay.
After I waited four months for my appointment they called the week before to confirm my appointment with a different Dr, when I questioned this they said well if you want to see him you're going to have to wait a few months.
So since I had already taken off work for the appointment I went ahead and went to the app.
When we went up there we got a motel room for the night before the appointment since it was a five hour drive.
We went and saw the Dr I didn't want and I started Tysabri.
So I have been on Tysabri since December of 2012. I didn't like the fact that the Dr made me go to the Shepherd Center every month for the Tysabri.
I eventually met a neurologist closer at some MS support group meetings and mentioned how that Dr would not let me do the Tysabri anywhere except for Shepherd Center. He agreed that that drive was too much every four weeks. I set up an appointment as fast as I could but I had to get my PCP to refer me.
So I started seeing that Dr and there is an infusion center closer to my home than his office.
I keep doing the Tysabri. I was also diagnosed with sleep apnea along the way.
Then I started falling asleep at my desk at work. I was given chances to try and figure out why it was happening.
My original neurologist who I still saw some was willing to put me out on long term disability, but I listened to my wife and we deci maybe if instead of two fifteen minutes breaks I would do better with three ten minute breaks.
Eventually it happened again and I was terminated from my job(career.)
So now I am married with two children and no job and no prospects.
I eventually found something but didn't like it because it was an hour and a half each way. I did that for a few months and tried to make it as an Aflac agent. That didn't work out. So I later found a position as a service advisor for a Dodge dealership about 30 miles away. Right when my benefits were going to kick in the chain I was with sold that dealership to another chain. So they came in and said no one was going to lose their job. So the last day at the old dealership chain I was at I was at I was not at work because of my Tysabri infusion. When I came back the next day to go to work I was greeted by a new computer system. I was shown about a quarter of what I was shown with the previous system which I only got about half of what I needed to know.
Which I have tried to get on Social Security disability in the process, but have not gotten it yet. I actually had a hearing for it last year, but I had found a job where he two requirements were have a pulse and type 30 WPM. I quit that job before being fired for not convinci enough idiots who had bought timeshares to renew, upgrade, deposit their weeks into so the company could rent them to others.
So I was not given my Social Security and we are in the process of try
When I was first diagnosed my neurologist told us to find out what we could about the C.R.A.B drugs and he would see me in a month and we would decide which one I would do. Tysabri had come out but was more of a second line at that time. It had come out, been recalled, and brought back out under the Touch program.
I did the Rebif for five years. Then when we went to my neurologist appointment after a recent MRI he said the Rebif was not working anymore so we would have to make a decision about another treatment.
So now my neurologist was not being proactive enough to make my stepmother happy because I was steadily declining. I was not declining as bad as she said, but I was declining.
So she decided we needed a new neurologist and tried to make an appointment for me at the Shepherd Center. They would not let her make my appointment since I was old enough nto make my own decisions.
So I started the process of getting an appointment at the Shepherd Center. I called and tried to get an appointment with one specific Dr. I was told I would have to wait four months so I said okay.
After I waited four months for my appointment they called the week before to confirm my appointment with a different Dr, when I questioned this they said well if you want to see him you're going to have to wait a few months.
So since I had already taken off work for the appointment I went ahead and went to the app.
When we went up there we got a motel room for the night before the appointment since it was a five hour drive.
We went and saw the Dr I didn't want and I started Tysabri.
So I have been on Tysabri since December of 2012. I didn't like the fact that the Dr made me go to the Shepherd Center every month for the Tysabri.
I eventually met a neurologist closer at some MS support group meetings and mentioned how that Dr would not let me do the Tysabri anywhere except for Shepherd Center. He agreed that that drive was too much every four weeks. I set up an appointment as fast as I could but I had to get my PCP to refer me.
So I started seeing that Dr and there is an infusion center closer to my home than his office.
I keep doing the Tysabri. I was also diagnosed with sleep apnea along the way.
Then I started falling asleep at my desk at work. I was given chances to try and figure out why it was happening.
My original neurologist who I still saw some was willing to put me out on long term disability, but I listened to my wife and we deci maybe if instead of two fifteen minutes breaks I would do better with three ten minute breaks.
Eventually it happened again and I was terminated from my job(career.)
So now I am married with two children and no job and no prospects.
I eventually found something but didn't like it because it was an hour and a half each way. I did that for a few months and tried to make it as an Aflac agent. That didn't work out. So I later found a position as a service advisor for a Dodge dealership about 30 miles away. Right when my benefits were going to kick in the chain I was with sold that dealership to another chain. So they came in and said no one was going to lose their job. So the last day at the old dealership chain I was at I was at I was not at work because of my Tysabri infusion. When I came back the next day to go to work I was greeted by a new computer system. I was shown about a quarter of what I was shown with the previous system which I only got about half of what I needed to know.
Which I have tried to get on Social Security disability in the process, but have not gotten it yet. I actually had a hearing for it last year, but I had found a job where he two requirements were have a pulse and type 30 WPM. I quit that job before being fired for not convinci enough idiots who had bought timeshares to renew, upgrade, deposit their weeks into so the company could rent them to others.
So I was not given my Social Security and we are in the process of try
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