After talking to my neurologist, I have decided to wait until I get an MRI before switching to Tysabri.
I am applying for some financial assistance for the MRI since I am uninsured right now.
I cannot find documentation anywhere of someone switching from Gilenya to Tysabri. Enough people have MS that someone must have taken that treatment path, but Gilenya is so new that I cannot find anything documented.
My doctor says none of their patients have done that. I called Tysabri and the navigator said she is certain someone has switched like that but she had no documentation.
My doctor said I should do a two week wash out before switching from one to the next, and doesn't share the same concerns I have with switching from one immune suppressant to the next.
Before starting Tysabri, some blood work is required to test for the JC virus. If positive, your chances of PML (Progressive multifocal leukoencephalopathy) are greater. PML can/will cause disability or death.
As I have stated before, I have lost all fear of death, but the fear of disability is there. I cannot and will not live as a fucking cripple. That will be when my time is up...
One of the main side effects of Tysabri is depression. I have read many people reporting issues with it and I really cannot afford to add more to this mind. I am on a steady plateau right now, where I am not happy nor really sad. I am just here getting it over with. Don't ask me what that means...I am just here, wasting space, taking resources better used for people doing something with themselves.
Every day for a long time now has started with "Whats the fucking point?"
Can anyone tell me what the fucking point is? I have no kids, no love, no assets, most of the family is nearly dead, and daily living is a struggle.
I am sick of hearing some bullshit about living for the love of a fictional being.
I was talking to grandmother who is very religious, and I mentioned being unlucky, and she said "There is no such thing as luck, God has control of everything", and that "everything happens for a reason to make people better". I told her I don't feel better, and that I cannot foresee any possible reason to get getting MS. She didn't have shit to say except "we just need to trust God and his decisions". Are you fucking kidding me?
She still thinks of me as a believer, and I will let her think that. As bad as religion has been for the history of this world, with the senseless crimes, killings, etc.. all in the name of God or some religion.
But without it...fuck, I almost think we would be worst off. Humans needs to think there is an eternal consequence to their actions.
Anyways, I will get the MRI if I get approved for financial assistance, don't even want to think about what I will do if I am not approved.
The MRI will have contrast so I will have an IV put in...with the needle phobia, I do not know how that is going to work. I was sweating on the phone with the doc talking about it, as well as my last MS meeting talking about it. I am fucked in the head and need to figure that one out. I have not seen the last of needles in my lifetime...
Tysabri will not happen until an MRI is done. Even then, I am reluctant. I am quickly running out of options. None of the disease modifying drugs have worked so far, and none of the symptom management medications have worked either... I have a feeling I will end up being some fucked up rarity where the medications simply do not work and I am (further) stuck in the downward spiral.
Sunday, June 24, 2012
Wednesday, June 20, 2012
Update 6/20
A lot has happened since the last post, been way too busy with various bullshit. Still walking with a cane. I have tried to leave it at times but I will lose my balance or I have trouble getting out of a chair...
I put in the request to start the Tysabri process. Contacted Tysabri about the financial assistance program so information is coming in on that. I will start it after they do the blood work to test for PML. I was sweating last night thinking about the blood work and infusions... I don't know yet how I will deal with the needles...
Last Wednesday I received word that my ailing 80 year old grandfather (last grandfather I have) was diagnosed with cancer and that it was in multiple locations.
He had just been up to visit me in April, but that trip was hard on him. I wanted to see him before he got in bad shape. I would not be able to visit him once he turned for the worst.
I left the next day and drove 14 hours (airlines are too expensive). It was a rough ride but got it done.
First night, storm rolled in and power was out from 2am to 10am. During that time there was panic because there was barely enough oxygen to get him through that time span. Next morning the water well quit so there was no water... There was plenty of small bullshit but the biggest problem was the heat. Fuck, was it hot. 95 degrees mid day, and 90 at night. Where I live, it had been in the 60's for the week before the trip.
It was humid, more than I remember. I grew up in this town and don't remember it being as hot and humid. I was swearing at myself every time I went to have a cigarette, and it never failed that my Grandfather would go smoke shortly after I would come in, and looking to spend every moment I could with him, I would follow him and deal with the heat more.
I left Sunday and headed home. Another rough ride, rougher than the way there, but that is not unusual.
I will miss him dearly. He is a very nice guy, never raised his voice at me ever. If he ever got angry with me, he never showed it.
A couple days after getting back, I had to make another trip that was planned. Met my dad in a city that is about 4 hours south and took him to a concert on his 50th birthday. It was a lot of fun, concert was great.
My sister flew into that town the next day. We ran around town, enjoyed some food and took a tour of a major league baseball stadium.
One thing I want to mention about this tour... I didn't think anything of it until my sister and cellmate raised hell about it later, but the tour guide, after I had already managed 3 flights of stairs, I was asked in the middle of the tour if I need an elevator "because I am clearly having trouble with the stairs".... well no shit bitch.
I was just happy to get the option at the time since the next step was 8 flights of stairs down to the bottom of the stadium (got to go in the dugout!). She whispered to me that she preferred the stairs since her knees are bad. The girls were more offended and pissed than I was.
My sister rode back with me with my dad following and they visited at my place for a couple days.
It was a nice visit, I don't recall a single thing going wrong. The weather was still perfect.
Life in prison sucks. My cellmate can be real sweet sometimes, show a loving/caring side, but then a switch flips and she is the most spiteful, hateful, bitch I know.
The time spent with the bitch overshadow any time with the sweetie.
I have had the feeling for a long time that this will not work out in the end. That becomes prevalent when I think of my future and mull various options, that I always think of it in two parts, with her, without her.
I live with enough regrets that I must be careful about this decision. I am at a crossroads with moving across state lines again. I am tired of the bullshit games. I will not move her with me if this is not going to work.
I have an opportunity to move to a new state and begin a new life (with the fucking MS).
If I move with her, I am afraid it will only feel like transferring to a new prison.
I put in the request to start the Tysabri process. Contacted Tysabri about the financial assistance program so information is coming in on that. I will start it after they do the blood work to test for PML. I was sweating last night thinking about the blood work and infusions... I don't know yet how I will deal with the needles...
Last Wednesday I received word that my ailing 80 year old grandfather (last grandfather I have) was diagnosed with cancer and that it was in multiple locations.
He had just been up to visit me in April, but that trip was hard on him. I wanted to see him before he got in bad shape. I would not be able to visit him once he turned for the worst.
I left the next day and drove 14 hours (airlines are too expensive). It was a rough ride but got it done.
First night, storm rolled in and power was out from 2am to 10am. During that time there was panic because there was barely enough oxygen to get him through that time span. Next morning the water well quit so there was no water... There was plenty of small bullshit but the biggest problem was the heat. Fuck, was it hot. 95 degrees mid day, and 90 at night. Where I live, it had been in the 60's for the week before the trip.
It was humid, more than I remember. I grew up in this town and don't remember it being as hot and humid. I was swearing at myself every time I went to have a cigarette, and it never failed that my Grandfather would go smoke shortly after I would come in, and looking to spend every moment I could with him, I would follow him and deal with the heat more.
I left Sunday and headed home. Another rough ride, rougher than the way there, but that is not unusual.
I will miss him dearly. He is a very nice guy, never raised his voice at me ever. If he ever got angry with me, he never showed it.
A couple days after getting back, I had to make another trip that was planned. Met my dad in a city that is about 4 hours south and took him to a concert on his 50th birthday. It was a lot of fun, concert was great.
My sister flew into that town the next day. We ran around town, enjoyed some food and took a tour of a major league baseball stadium.
One thing I want to mention about this tour... I didn't think anything of it until my sister and cellmate raised hell about it later, but the tour guide, after I had already managed 3 flights of stairs, I was asked in the middle of the tour if I need an elevator "because I am clearly having trouble with the stairs".... well no shit bitch.
I was just happy to get the option at the time since the next step was 8 flights of stairs down to the bottom of the stadium (got to go in the dugout!). She whispered to me that she preferred the stairs since her knees are bad. The girls were more offended and pissed than I was.
My sister rode back with me with my dad following and they visited at my place for a couple days.
It was a nice visit, I don't recall a single thing going wrong. The weather was still perfect.
Life in prison sucks. My cellmate can be real sweet sometimes, show a loving/caring side, but then a switch flips and she is the most spiteful, hateful, bitch I know.
The time spent with the bitch overshadow any time with the sweetie.
I have had the feeling for a long time that this will not work out in the end. That becomes prevalent when I think of my future and mull various options, that I always think of it in two parts, with her, without her.
I live with enough regrets that I must be careful about this decision. I am at a crossroads with moving across state lines again. I am tired of the bullshit games. I will not move her with me if this is not going to work.
I have an opportunity to move to a new state and begin a new life (with the fucking MS).
If I move with her, I am afraid it will only feel like transferring to a new prison.
Friday, June 1, 2012
Update 6/1
Talked to my neurologist, he thinks the Gilenya may not be working considering the number of exacerbations/flare ups that I have had on it. He would like another MRI done since it has been a year.
Because I have experienced a slight turn around from the initial issues with this current flare up, steroids are not necessary, although they would have put me on them had I called it in right away. Just as well, didn't want to be on that shit.
The next therapy he recommends for me is Tysabri. It is a once a month infusion. Yet another treatment with needles (IV), which I seem to lost my ability to handle.
I am at a crossroads with this. Each therapy has its own way of fucking you up in another way, or in most cases, does nothing to slow progression of MS.
Death is the only cure for this bullshit disease...with my shit luck I will likely live to 90.
Because I have experienced a slight turn around from the initial issues with this current flare up, steroids are not necessary, although they would have put me on them had I called it in right away. Just as well, didn't want to be on that shit.
The next therapy he recommends for me is Tysabri. It is a once a month infusion. Yet another treatment with needles (IV), which I seem to lost my ability to handle.
I am at a crossroads with this. Each therapy has its own way of fucking you up in another way, or in most cases, does nothing to slow progression of MS.
Death is the only cure for this bullshit disease...with my shit luck I will likely live to 90.
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