Tysabri

[SarahL2491]

Has anyone ever had an occasional "off" day with Tysabri?  I went for my infusion yesterday and usually they don't bother me at all but spent the rest of the day on the couch, with no energy and all day today with none.

Can't remember having one like this in quite awhile and just wondering if anyone else had this occasional problem.  Most of the time, its just like I got a saline injection!

Thanks
Sarah

[Wildflower33]

Thanks Sarah for your response, something I fell to tell you was that my husband was by my side every step of the way 100%. He was there for my first neuro visit, and wants to know everything about how I'm feeling to understanding  and looking up everything on MS. He is the one that brought me to you, to this site, to this group of MS patients to talk about and make me feel comfortable and at easy. I did sit down and talk to my family just recently, it will take some time because we wasn't close from the start mainly my mother, my brothers, we are starting to become closer again. I'm the oldest of my family and I'm the one that mostly takes charge, it's unusual lending on my family when they are that for me. So I handle that situation, I at least let them know what's going on. And for my neuro I go see him in a few weeks because I've been having chest pains even when I was on Copaxone and that's something I want to address because that is starting to scare me. At first I thought it was my anxiety or my insomnia along with the MS but I notice it has to be something else, I ruled those two out. I am finding more information on MS as much as I can, my husband has been my support system but I know some days I would need to turn to some people that knows what I'm going thru. So this would be very helpful.

[SarahL2491]

MS is different for each of us, but if you are familiar with the 5 stages of death, MS runs along the same parallel, but we can go in and out of them and not in any particular order.  Denial is my favorite when I am feeling good and have been good for awhile.

My latest neuro thinks I've had MS since 1981 (no MRI then) and I went thru 3-4 before finding this one, 3 states away, and won't give him up for anything.  

I suspected this was what I had, and gave up trying to convince the idiot ones and someone on this forum recommended my current MS neuro and it took almost a year to get in to see him, took all my records and letters from eye physicians and he told me I had MS and showed me the lesions on my brain and spine (note - same MRI that other idiots looked at) and he put me on Tysabri.

My first year (and it differs for everyone) was a whirlwind as I adjusted to the news.  He immediately put me on Tysabri and I have only had 1 permanent disability since then, that being foot drop, for which I wear a brace.  I had become light sensitive some 5-6 years earlier.

The hardest part for many is that "you look so good" when we know inside that we are not good, that things are going on inside that they can't see.

You need to find a support system.  Start with Biogen, if you are on Tysabri, they are wonderful people and I have called them just to talk when I am down.  Look for a local MS group also.  You can't shoulder this by yourself, honestly.  

There are some wonderful books available, and the most expensive are not always the best.  If you will PM me, or give me a couple days, I will give you the name and ISB number of a very inexpensive book that has been my bible for many years.

There are many good people on this forum who have years of experience and this is one of the best forum groups there is.  You can scream, rant, whine (bring your own cheese), share, ask questions, whatever, chances are someone has been there.

Since this is your first year, learn all you can.  Educate yourself.  Hit the library and scarf up anything free to read.  I think Biogen will give you a couple free books, if I remember right.  

You mention that your family does not know, did I understand that right?  You might want to share it, especially with your spouse.  

Take some time to take it all in, learn everything you can, and gather a support system.  But it will be hard not to slide this past your spouse.  My husband is 80 and he sometimes forgets that he has to take over for me.  I have a service dog in training and she requires daily lessons and just this week,

Tysabri hit me wrong (it does occasionally) and I was down for 3 days; the symptoms are always the same but no one understands why I go on a "no food, no water" diet until I get to where I can suck on ice cubes, then I work my way back.  Its a tactic I've had to learn and hubby has finally come to understand.  

It's hard for him to just stand by and watch but he's finally managed it but I still have to whine on here, as you've noted.  You may also need a new neuro if the one you have is not an MS specialist.  You need to advise all of your other doctors and don't be surprised if you know more about MS than they do!  

Welcome to our little corner and the club no one wants to belong to.  We'll help you if we can.  There are some wonderful articles on the forum, available to you.  Up at the right top corner, there is a search in this forum (anyone correct me if I've got this wrong) and search for anything relating to MS.

I also tested positive for JC virus before going on Tysabri, so don't let that scare you off.  If your neuro has not run this test, have him run it.

Sarah

[Wildflower33]

I was recently diagnosed with MS 2013 four months after my wedding, I completely went blind in my right eye, put on steroids, than a drug called Copaxone 5 days a week, than 3 days a week, just a few months ago was changed again to tysabri after finding legions on my spine. How long did you start with this illness? This is a beginning start for me compared to never being serious ill before. Does your feelings and emotions get the best of you? For what I'm facing this will be a whirlwind for me.. My family and friends don't have no knowledge of this and I'm a lost sheep.

Wildflower33

[Wildflower33]

I was recently diagnosed with MS 2013 four months after my wedding, I completely went blind in my right eye, put on steroids, than a drug called Copaxone 5 days a week, than 3 days a week, just a few months ago was changed again to tysabri after finding legions on my spine. How long did you start with this illness? This is a beginning start for me compared to never being serious ill before. Does your feelings and emotions get the best of you? For what I'm facing this will be a whirlwind for me.. My family and friends don't have no knowledge of this and I'm a lost sheep.

Wildflower33

[candy158]

Hang in there my bff...!!!   you will do well, I can feel it.!!  Still waiting for Biogen to get in touch with me, had the call from the "counsellor" , but nothing else..... had my blood test done too, no response there either.... so we wait...... do do do do ...... LOL
(HUGS)

[SarahL2491]

Well, its Sunday and I'm finally coming back to normal.  Thinking back, Ty has done this to me about 3 times in 3 years.  Still getting used to the CPAP, is not my bff for sure, but if I must.

[candy158]

Sorry Sarah, my friend, I am not there yet, but, you will be one I come to if and when they start me.

Still have not heard from Biogen........ Sorry you are not feeling energy, then you will be cheered up by my note, I hope.

Hope you day gets the sunshine thru....

((HUGS))
Candy