MRI Results

[KatieAgain]

Received my MRI results today. No changes, stable, no new lesions.

Still I am disappointed. I have had 15 infusions...and no shrinking C-Spine Lesions.

I'm in a small flare...I think it would have been worse without the TY. And I am having heart issues...which I am not allowing medical intervention for.

Chemo...don't think I am strong enough to do it. I am thinking its time for the fat lady to sing. Sure wish I could pass on my JCV- Status to someone that could use it.

[22cyclist]

Katie: my results are similar on Ty. I have no new lesions, but I do have shrinking of a pontine lesion.I have been on Ty for over two years though. I am satisfied with this medication since on others I developed new lesions that caused major disability. I am happy to be stable for now.

You may not have been on it long enough for it to change your lesions. The benefit only starts at the 6 month mark. I would try to hang in there for a while. See if you can hang in there a while and hopefully changes will occur.

Take care
Lisa

[ru4cats]

Katie,

I wanted to get off a quick response before I travel 55 miles to my 59th infusion. Hard to believe I've had that many. I know your journey with MS has been much more severe than mine.

My neurologist was the one who encouraged me to try Tysabri, although at that time I shouldn't have been allowed to use it since it was my 1st DMD. However, she was very clear that the goal would be to stop progression and hopefully, the lesions I had would go away. That goal has been reached. My MRI's are stable, although I've never had another MRI of my spine. She did say Tysabri also worked on the spinal lesions.

She was also very clear that improvement was not a given. MS is progressive, and at my age (almost 63 now), my brain reserves were depleted so my body had nothing to help rebuild the myelin that was gone. Also, the aging process also depletes myelin, a double whammy!

I did read or heard somewhere that the positive effects of Tysabri can take at least 3 years to show themselves, and I do have proof of that. I've been battling left hand weakness from the beginning, and with exercise and the Ty, I have kept it at bay.

I also read the other day that they have had great success with a myelin regeneration with a new drug that is entering a new test phase. With luck, a few more years of testing, and it might be out.

I agree with 22cylist; give Ty some more time. Time to travel. All the best.

[KatieAgain]

Thanks to both of you.

I don't make good decisions while in a flare. Since this flare is sensory (CNS Dizziness and nausea) and fatigue...I have time for IVSM. Mobility has not been affected. I see my MS Specialist in two weeks.

My Mother said something that rang true. If I was not on TY...I would most likely be in the hospital again.

I still am undecided about the heart stuff. It is indeed MS Related, but it could by caused by the drug-induced Anemia or one of the lesions. If I was to agree to see a Cardiologist..it would have to be Tampa's finest...because it is a complicated mess.

Darn cold here too...thats not helping...Im cold intolerant.

Anyway...thanks again for you kind thoughts.

[kim-mastro]

Please keep fighting,KatieAgain. Find something to look forward to even if it's one more sunrise or one more smile from someone you love. After that, find another something to look forward to. Please don't give up.It's true that I don't know you and I don't know what you've gone through but there is always something to look forward to. I probably shouldn't speak for anyone else but I'm pretty sure that I'm not the only one who would miss you! So, Katie, look forward to all of us here in the forum, if nothing else!

[pennstater]

Hi Katie.

Just 1 week removed from 5day IVSM. My MRIs of brain, cervical and thoracic spine have all been stable on Ty. I had small improvement at the largest lesion on C-6, but as neuro put it, it is still a big lesion. But I look at stable as Ty doing lots job. Even without MRI changes, symptoms did improve, so that is a victory itself.

I am sorry to hear you are in a flare. It is disappointing when you have been on a good roll, which can make it harder to take. As you know, I have had a rough year with infections, so I probably only averaged half my infusions since May. Just wait I g on clearance from neuro for next one. Still JCNegative as well.

I do hope the flare subsides quickly. I also hope that your heart issue is something that can be managed with minimal intervention. As you said, now is not the best time to make decisions.

I do hope you start to feel better. Keep us updated.

[KatieAgain]

Kim-

I'm still fighting. You seem so kind and thank you for such thoughtful words and I did see your other post in another thread. We need more people like you here at MS World. We will indeed get to know each other...yes???

Kathy...you sure have been through the ringer with all those infections. I know its taken its toll. Good Lord.

I was actually glad to see you were on IVSM...pretty awesome stuff. I hope you are getting better. I don't know if you remember the days of the big bottles of Prednisone Tablets...they had to hid all the razor blades in the house. So IVSM is great...steroid crash...not fun. But can be mostly prevented with a taper.

I have lesions at C-2, C-4, and C-6...the largest of mine is also at C-6.

I just don't know about the heart stuff. My Ferritin Levels will not make it out of the Single Digits...even with daily supplementation. I am guessing my MS Specialist will refer me to a Hematologist first. I will find out the full story in a few weeks.

Thanks for responding.

[hunterd]

Please keep fighting,KatieAgain. Find something to look forward to even if it's one more sunrise or one more smile from someone you love. After that, find another something to look forward to. Please don't give up.It's true that I don't know you and I don't know what you've gone through but there is always something to look forward to. I probably shouldn't speak for anyone else but I'm pretty sure that I'm not the only one who would miss you! So, Katie, look forward to all of us here in the forum, if nothing else!

ditto
i am thinking that the world would be much worse without you in it

[kim-mastro]

Katie- my mom (passed 14 years ago) always said "God never gives you more than you can handle". There were many times when I told her she was out of her mind but she really wasn't! We're a lot stronger than we know, Katie! Your posts have inspired me tremendously. Your advice to other people on this forum has helped me, too. So, trust me, you'll never know how many people you help!
And yes, we will get to know each other better! Thanks for your kind words. And hang in there. Keep us posted.

[KatieAgain]

ditto
i am thinking that the world would be much worse without you in it

Hunter...((((Big Hugs))))