I’m finally back to seeing my neurologist on a regular basis. Last month we decided to have me re-fitted for AFO braces to stabilize my ankles. [foot drop]
I was fitted for both ankles yesterday. While I am unable to walk, we are hoping these braces will help me to stand up using my sit-to-stand. I have not been able to stand due to my foot drop[s] and weakness in my knees and hips. I am hoping for a good outcome. I know it will take some time and a lot of pain, but even the pain will be worth it to me. It was tough fitting me for the braces as my feet literally just hang down. It took some serious stretching and pain to get my feet casted. But, WE DID IT!!
This month my neuro and I decided I will start Tysabri infusions again.
I started Tysabri back in 2011. My blog mentioning it is here. After some time on it I contracted hepA [medicinal] from the medication[s] I was taking. This time I am going to be very careful of the other meds I take while on Tysabri. I will be staying away from acetaminophen and any other med that may cause organ damage. I am being tested for the John Cunningham Virus (JCV) first, as JCV could lead to progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability. I had no issues with this 4 years ago and am hoping I have none this time around. After my AFO fittings were finished, I went by my neuro’s office and I signed all the paperwork to get the process moving along. I will try anything to help myself as I truly have nothing to lose.
Last time I ended up having a power port inserted in my chest for easier infusions, as my veins are shot. I am so glad I did not have it removed when they stopped the infusions. Maybe, somewhere inside of me I knew that one day I’d give it a go again.
I’m trying to keep a positive attitude about all of this. I know I will still have my nightly cry, but I have to get it out somehow. Thankfully, my caregiver and BFF Steph, never lets me wallow for too long.
Looks like it’s a DVR morning; Law and Order:SVU, Criminal Minds, Grey’s Anatomy. Then back to Netflix to get caught up o Supernatural!
Was up much too early this morning. Bleck 5:30 am comes too fast. We decided that I’ll get up when Roger leaves for work. This way he can get me up out of the bed so I do not have a repeat of yesterday. Did I mention, I HATE MS! We’re wondering if the sudden worsening of my legs etc. is due to stopping the Tysabri. Maybe my body is adjusting itself to not having the medication in my body. Hopefully it will level out soon.
If you need me, you can find me in my bed again. I’ll be the one with three dogs lying all over me. 😉 I’m off as my hands will not cooperate.
Figures, right? Another med bites the dust. I was really beginning to think this one may be the one. Not so much, My liver count went up more, 3rd month in a row, so now the Tysabri will stop. Wonder when the next miracle drug will come out? **insert sarcasm…
Why I tried it in the first place is beyond me. It’s mainly for RRMS [relapsing-remitting] not for PPMS [primary-progressive]. That’ll teach me to think a new med will work for me. Now we’ll see what the new game plan is; new med, try it again later. I have taught myself NEVER to get my hopes up, sadly this time I did not listen. I feel like I’m mourning a death of some kind. The death of a new beginning? I don’t know… Hopefully if I try another ‘miracle’ drug it will utilize my port. roflmao Now what… do I have it removed, keep it in just in case? Again, I don’t know. Not sure how many more medication let-downs my heart can take. It’s been six thus far. Fuuuuuuuuck, fuck, fuck!!
Not quite sure what to do with myself… hmmm my bed looks comfy…
I had my fourth infusion of Tysabri today. One side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. I thought that if you made it through the first infusion and didn’t have any problems with is effect, that it was a mute point. Today I was told I need to get the test to see if I have PML. Just because I have not contracted it yet doesn’t mean I wont. 1 out of 200 people with PML and on Tysabri, could die.
Kind of wish I knew THESE stats earlier. I’ll be having the test next month when I see my neuro, and am having some blood work done this week to check and make sure the Tysabri is not harming any internal organs.
So far nothing seems different. Again, I know it can take 6 months to one to see anything, but I want it now!! If I do not see or feel any difference in the 6 months, I’m done. Not worth all the risks for something that may not help. So, we shall see.
I have said all I expect and/or want from this is to be able to drive again and hold my bladder. Now, with all the risks, I want it all!!! 😛
As I started my new treatment this issue came in to play. On August 23, 2011 I had my first infusion of Tysabri.
One major side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. This medication suppresses my over active immune system due to my progressive MS, which can lead to this viral infection. I will be monitored for medicinal hepatitis [liver damage] and UTI’s. Now that my system will be suppressed I am more prone to getting other issues.
When getting ready for my appointment we [hubby and I] discussed the possibility of PML. When Roger looked at me and said that this way I can get my wish, to die, I sat open mouthed. I have stated, when in depression, that death is freedom and sometimes I do not want to wake up in the morning, I guess he took it literally. With tears welling up in my eyes I explained that I do NOT WANT to die, I just want the pain to go away. I want to walk again, to be able to hold my bladder, to be able to go out in to the sun, to be able to drive, to not have mental and physical pain… I want to play with my kids!! I will be honest… there are days I do not want to be here anymore. Unless you suffer from a serious chronic illness it is hard to grasp. But, in all actuality, I do not want to die. I just want my life back, a quality of life back.
I’m not even asking for much from this medication. I just want to be able to drive again and hold that bitch of a bladder! 😛 I’m not expecting much, as when I do my hopes are always dashed, so I am just waiting. It’s all I can do. I’ll keep fighting until my strength is gone. I need to be here to annoy my kids for a long time to come. It’s what I live for! lol
I will now go once a month for the two hour infusion. They [who the hell are they] say it can take 6 months to a year to see a difference. I’ve waited this long, so what’s another year or so. My problem is when I want something, I want it now. MS has certainly taught me patience… for the most part! [I try, really I do]
A new adventure is happening, and as always, I will go in head first! Wish me luck!
Well, it’s official, my MS has progressed faster than my neuro would like.
There are no real medications out there yet for primary progressive ms [ppms]. Most of the medications are for relapsing-remitting ms [rrms].
I asked what, if anything, can help me regain any strength or any movement in my legs. Even transferring from my chair to my bed or the tinkletorium is getting quite hard.
I had mentioned a medication last year with some serious side effects, death being one. There have been incidents of patients getting an infection called progressive mutifocal leukoencephalopathy [PML]. They have found that these people may have had PML before starting the medication so that may be the reason why.
It has not been tested on many patients with the more severe form like my ppms. My neuro has patients on it that have ppms and they have regained some to a lot of strength back. It can take 6mos to one year to see any results. It is a 3 hour infusion every four weeks 40 mins from my home.
I have a friend who uses it and he said his life has changed for the better, and he has been on it for over two years.
The referral was called in directly by my neuro so I should find out if I can try it in the next week or so.
I’m scared to death, but not trying something is even scarier. It’s only a matter of time before I lose complete mobility and am bed-ridden, so if this might help me to even be able to go back to using my walker in my home, it will be worth it.