Life with MS, seeking a cure

Wednesday, January 24, 2007

I'm so blue,,,,,,,,,,,,,,,,,,,,

Just got home from a 2nd opinion for Tysabri, he does not advise it too. I'm numb right now, I need to make another game plan. I can't let this derail my optimism to get cured. I called Dr Melamed and talked with his assistant and she said, we'll look into other options and not to be discouraged, She could hear it in my voice I know.

This neuro wanted me to try Methotrexate, a chemo. I need to digest this all.

Right now its like all the doctors just want me to stay in my room and be content. Things got to change.
XOXO
Karyl

Sunday, January 21, 2007

Good news. My MRI shows no new lesions and no active lesions, stable MS. All my blood work is great, I'm the picture of health, just can't walk...........

This week I'm going to an old neuro I've seen before and ask him to prescribe Ty for me. I swear I'll get this drug one way or another. I'm also going to have a bone density test. I'm tired of going to doctors offices but I gotta do what I gotta do.

We have tons of snow. It should start the big melt this week. Nice to hear from you Michael, how are things going? Thanks Laureen for your encouragement, I'm keeping up the fight. And yes, there are angels amoungst us.
Love
Karyl

Sunday, January 14, 2007

Jan 5, my TRIP to my PCP for a pap and check up:
Chuck (hubby) took me to the doctors. He pulled under the nice driveway, covered entry. It was snowing and the driveway was just wet with puddles, but covered. He got my scooter out, I stood up and he tried to help me move my foot, without telling me first. DOWN I went. All these people coming and going all stopped to help, They asked if I was hurt, I told them no but my butt is frozen. Sitting in a puddle of ice water. Someone brought out blankets etc. I just wanted the paramedics to pick me up but these bunch of angels insisted we not wait and they could do it. They did it. Put me right on to my scooter. They we're all heaven sent. One guy said "your as light as a feather" as I leaned back to ask him what he's drinking, and may I have some. The laughter made them all almost drop me, but they didn't. People are inherently good.

Jan 10, my trip to my neuro:
Went to my neuro today. She wants me to see this other neuro for a 2nd opinion to take Tysabri. She gave me his name and I am pretty excited. I've read many of his papers, Dr Corboy, he's done a lot of experimental things with stem cells. He did it the first time on a friend of mine, Ben, 29, about 7-8 years ago. Last I talked to him, years ago, it halted the MS but didn't help to recover all the way. He walks unaided though, that would work for me. This doctor is hard to get in to, you have to be referred by your neuro. She has to write a paper explaining why she thinks I need to be seen by him. Then they call me for an appointment. Should take 3 months. I'm getting impatient.........

Jan 11, my trip to the Immunologist:
My appt with Dr M went great. They took tons of blood, and some tests for my PCP. No one touches my port except my nurses. After 4 months with no IVIG, Dr. M wants to see where my IGG level is to see if I'm still a good candidate for Tysabri. If its low he will give me a couple months of IVIG to boost my immune system then start Tysabri. He wants an up to date MRI, so I'll go next week to have a brain and C-spine done. I had the last one a year ago and was stable. I'm anxious to get results to see if MS is progressing or its just my body weakened from doing nothing.

Jan 13 - I went at 10 this morning to have my MRI w/contrast, glad that's out of the way. The tech doing the MRI could not find a vein, SHOCKING, they kept exploding on him, poor guy. He finally got one. My hands look like hell but they'll heal. I can't wait to hear results.


I go back to Dr M in two weeks. It's wonderful being insured again.

It's all a big pain in the butt, but at least I'm on track to get something new to fight this SOB. I am still thinking about meeting Dr Corboy, decisions decisions. I think stem cells will be part of the fix but for right now I'm fighting for Tysabri. I don't understand what the big deal is.

Be careful everyone,
Karyl