Fewer lesions but I still feel cruddy, why?
 

I've had MS since at least 2004, dx in late 2005, been on C, R and now two doses of Tysabri.

I've been off R for the most of the late summer and early fall until I had my first Ty in early October.

I've felt cruddy since about May/June when school got overwhelming and the heat and humidity started. I felt icky all summer long with depression, fatigue, constant daily fevers, and the problems with the heat and humidity which made me a summer vampire. I also had problems with my arms, hands, and fingers with severe weakness and some pain.

School starts here in September and I just got worse. Cognitive issues where I'd just blank at the board and couldn't remember how to do stuff I know like a division problem. More fatigue, much worse depression, fevers still, and problems with the arms and fingers.

So I just had a new MRI done to compare it to May 2008's MRI, and great news, I have a decrease in brain plaques!

So why do I feel so cruddy? I am out on a paid medical leave and now I feel like I should be doing much better due to what the MRI says.

I have one lesion in my spine that has been there since 2005 so I don't think it's anything going on in my spine.

Can someone brilliant come along and make sense of this for me? Why aren't I doing better with fewer lesions?

Help me to feel good about this and my leave, please!!

Thanks,
Weebs

I didn't start feeling better until after 3-4 doses of Tysabri. It took a lot longer to be sure the improvements were not just in my mind, so much so that I refused to post on my perceptions of how I was feeling and what I noted until after my 6 month MRI. It's been gradual and it's been steady since then.

I figure I have been diagnosed since 2004, and that it took a major event to get diagnosed, so who knows how long I was one of those silent damage people with MS who didn't know it?

Tysabri is not designed to stop relapses. It is designed to reduce the number of relapses. You may be in or coming out of relapse. There may also be some depression happening. Only you and your doc can answer that. Are you on an AD or would you consider one? Maybe talk to the doc about what you are feeling and see what his/her thoughts are about it.

I think with only one infusion under your belt, that you need to give it time to work.

Let us know what comes of this. We are rooting for you!! :hug:

:circlelove:((((((((((Weebs))))))))))))

Hi Weeble,

I looked back through some of your posts, and see that you are under considerable stress in your work, and you are (or have been) suffering from anxiety, depression and high fatigue levels. That is a HUGE burden to carry.

I haven't had the anxiety or depression (except during PMS time, which is more then ENOUGH for me :eek:), but fatigue is what took me out of the workforce. (I was very unreliable too, but it was the fatigue that was the worst "symptom" ...).

Fatigue will affect our cognitive ability, and at some point in the disease process (for some of us), there is no way to rectify that except to sleep. In fact, I was able to sleep 2 - 3 hrs each day during work hours (worked from home), which kept me "functional" cognitively the rest of the time. However, I ended up spending ALL of my waking hours trying to get in my 8 of work. That is stressful, which only adds fuel to the fire.

That went on for two years, and I finally admitted defeat by going on LTD. At the same time I started LDN, which helped in so many ways . . . but the important part of the "fix" was leaving my job. :( :( :(

I used to thrive on stress before the MS got bad, but now any amount of stress sends me in a tail-spin. I think you are pushing yourself beyond your current capabilities/endurance, and that is compounding the problem.

I'm sure you are hoping the Tysabri is going to allow you to continue working, and perhaps it will after several months. :confused: If you can hang on to see if that happens, then that's good. If you have the option to go on STD for 3 or 4 months (to see how this med will work for you), that is what I would do personally. For me . . . at the end of 6 months of STD, I transitioned to LTD because I suspected that I wasn't going to ever get back in the workforce. I held onto my job for 2 yrs though (they couldn't replace me), but in the end, I realized I could no longer work.

I have a good existance now, and many of the problems I experienced for so long have rectified. Maybe it is the LDN, maybe it is leaving the workforce (removing the stress) . . . but at least I don't have to worry about it any more.

Good luck in thinking through your options.

Cherie

Just want you to know that I'm thinking of ya, Weebs and hope you start to feel better soon. Take care and don't beat yourself up over the ''leave'' from work. You have to take care of YOU first.
http://dl4.glitter-graphics.net/pub/...qnxuedjpni.jpg

Thanks for the replies. I do take two ADs, Lexapro and Abilify in the morning along with Provigil for alertness and Xanax for anxiety. The two ADs together are bringing me out of my depression.

I am out of work for now through Feb 1st, officially starting my leave on Tuesday of this week. I have been out of the classroom for the three weeks prior but still grading and planning and driving stuff back and forth at 6:30 in the morning.

I have had two Tysabri infusions, the most recent being last week. I just felt that if there are fewer lesions then I should be doing better and not the other way around. Maybe I just need to give it more time.

Thanks again for the replies,
Weebs:)

I'm really glad you are going to get a break, and that you will have a few more months of evaluating Tysabri before you have to make any short or long-term decisions. :hug: No matter what, the break will do you good. :)

Enhancing lesions and relapses are far from the end-all, be-all of this disease . . . although that is not what the "efficacy measures" for our drug options seem to imply. Several years ago (before Tysabri) they did regularly cycled MRI studies, and found that we would often have enhancing lesions with no symptoms/relapse, and no apparent lesions with plenty of disease activity going on. :confused:

They are still learning how all this ties together . . .

Cherie

hey weebs,
great big hugsssssssssss
hugss and more hugsssss

sorry you feeling blahhhhh, not sure on the MRI results compared to how you feel. I am undx, feel it migh be MS but MRI I am told are clear....with lots and lots of sxs of MS or something going on.

hugssss and hoping the break helps..if I had a break it might help for sure....hugss,sarah

opps didnt mean to make that all big...hehe just the huggg hehe

Weebs,
Let the Ty work for awhile before giving up...as an undxd with many MS sxs, it's frustrating to feel crummy while not having a dx. I'm sure you are frustrated that you're not improving...
Even though you have fewer active lesions, your body can still act up...
good luck, and I hope you feel some relief soon...:hug: