Had 1st MRI since Tysabri

[KatieAgain]

And it was bad. Unbelievable. I had it done at the VA and they called me...they never call anyone.

This is the best I have felt in years, and the VA Neuro says technically, I should be in a flare. For the love of God...this is the exact time last year that I started flaring.

My MS specialist has been notified and he wants the reports and MRI Pics.

So...here I was expecting a call saying, "Hey those cervical lesions are gone". Instead all I got was, "You are lit up like a Christmas Tree."

So is the Perfect Storm brewing again? Thought Tysabri was working...guess not.

[22cyclist]

Hi KatieAgain:

I am so sorry your MRI was bad. Tysabri sometimes takes up to 6 months to get into your system. I hope that you have not reached this level yet. I remember when I first started I had a relapse too. One I also didn't really feel, except some weakness in my left arm, but had two enhanced lesions. I had IVSM, and things calmed down after that.

I hope you can get a simple fix like that. Good luck

Take care
Lisa

[DebbieB]

Katie, I'm so sorry! So disappointing....

[ru4cats]

Katie,
I know it takes six months for Tysabri to reach a "saturation" level in your blood system and to really begin its work. It seems like you've only had 8 (?) infusions, and perhaps the damage captured on the MRI just showed Ty hadn't had enough time to work? I sure would wait to see what your MS specialist says...I hope you don't give up yet.

[KatieAgain]

I had the MRI exactly, to the day, 6-months after starting Tysabri. So, I am on the cusp.

TY has given me tremendous symptom relief. You can't make up dropping 3 EDSS points. You just can't. I do not have any new lesions, nor have any of the existing gotten bigger. The lesion that lit up is not new and it is at C-4. I am assuming it is a reflair, because I don't think the lesion could have remained lit-up for a year...I have never heard of that.

I absolutely have no symptoms whatsoever. Now, I was sick about a month ago with ulcers and anemia...lots of stress. And I don't care what anyone says stress does cause me to flare...damn the studies...stress and MS do not mix. Here in Katieville...we threw that study out the window. So maybe I was flaring a little.

Not sure if my Specialist is going to do IVSM since I don't have symptoms...but I sure see another MRI in my immediate future...I am guessing 90 days. But, I don't mind IVSM...and if it would turn off that light, I would be all for it.

I am not giving up on TY unless my Specialist takes me off. I just have to keep myself calm. Yep...just remain calm.

[AMJ]

Katie, I'm sorry the results from your MRI were not good. I'm not on TY, but hopefully the others are right, it just needs some time with you.

I agree with you re stress. It DOES affect my MS. It hits my walking ability so I know right away when I am getting stressed. Even minor stresses can affect you. Try your best to stay calm (I know, easier said than done).

Sending best wishes your way, hope everything works out.

[ru4cats]

So happy to hear you are sticking with Ty for now. I can honestly say I haven't seen the improvements you have, but I do know I am stable: no new lesions and the ones I have are unchanged after 49 infusions.

I'm glad I didn't read the study you did about stress not causing a flair! I am totally convinced stress is what caused my MS to rear it's ugly head! Nothing, nada, zip until my boss decided to wage a year long war to remove me from my job. Then my mother-in-law to whom I was very close died. That was all it took for my MS journey to begin.

On the positive side, I did win the battle with my boss. I stayed for four more years, and he moved on.

[lindaincolorado]

I am sorry your MRI was disappointing but, to me this sounds like a case of don't throw the baby out with the bath water..
I do not think your neuro will want you to stop Ty..
sometimes a person's sx are flaring and the MRI is good and sometimes vice-versa ..
hopefully next MRI and sx relief will be on the same page
Good luck !

[Chowda]

I have my first MRI in 6 months after Ty. I hope it works. My neuro said she wants to wait for it to kick in before she feels comfortable addressing everything because I have so many lesions everywhere.

This sucks Katie. Makes me worry :\ I do feel better but old and new stuff is appearing. I don't want to be like I was in Oct-Dec.

[Cat Mom]

Oh dear Katie, that bites! How many lesions are lit up? Are they all cervical? I'm so sorry.
Jen

[KatieAgain]

Yes Jen, It is indeed the C-Spine. It appears the brain has been nicely protected. But the concern is the C-Spine...not the brain. C-Spine Lesions are nasty little stinkers. I hate them...requires continuous monitoring. I have even been put in a Hospital because of C-Spine Lesions.

Chowda- Don't let my MRI results worry you Darlin'. We are all different. It's is like everyone has a different disease. If your symptoms are better, like mine...TY is doing something for you. And your Neuro sounds like she is wise. And like Marco said during my rant in the General Comments it just might take some time for the MRI to catch up with my non-existent symptoms.

But for me right now...MS Blows!

I have to remain calm and stress free....oooohhhhmmmmmm...

[Jola]

Just curious to know how you are doing with Tysabri now

[KatieAgain]

Just curious to know how you are doing with Tysabri now

Long story short. Was hospitalized for flare. Was also exceptionally anemic. Asked for Propofol but they gave me Solumedrol and Iron Infusions instead.

C-Spine Lesions are gone. TY did it's job.

Magic number of infusions for Katie is not 6 it is 8.

After seeing the $40,000 Hospital Bill the US Military had to pay, not to mention the $70,000 a year for my TY, I personally think the Propofol was a much better option.

If this ever happens again, I will go to my assigned VA Hospital ER...which so happens to be one of the VA hospitals being investigated...and tell the doc that I am on "The Super Duper Double Secret List". I bet I get my Propofol...next time I will be prepared!

But if you are thinking about TY...it worked for me...just took a little longer.

[ru4cats]

Awww, Katie, you have to stick around! I just love your sense of humor! Yes, the meds are expensive, but we are worth it!