Sunday, June 24, 2012


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.


  1. I don`t really know what to say, except one thing; you are not fucked in the head!! That`s for sure! I hope you have found some answeres to your questions about medication etc. Let us know!

    (He...seems like I have become a real person with a name now. How did that happen?)

  2. i personally know someone who went from tysabri to gilenya and then back to tysabri again. her dr made her wait until her white blood cell count was normal after coming off of gilenya before starting tysabri so, 6 or so weeks.

    you are not alone in not responding to any medications. i have burnt through every single medication and am currently awaiting fda approval of alemtuzumab/lamtrada. i also do not respond to symptom management. spasticity meds make me sick. stimulants make me sick. pain meds make me sick. it sucks, but some of us just get that hand.

    1. Cindy, sorry to hear of your troubles. Thank you for the information, finding comparable situations has been very difficult (which is good).