Life with MS, seeking a cure

Sunday, February 18, 2007

Did ya miss me? Be nice....... I've been doing OK, nothing great trust me. I tried the new meds and nothing new happened. I've been reading about Fampridine SR and it sounds like a good drug. Helps with arm and leg strength and it should work for P/P which will be a first. It's a pill too, horray!!!!! So little, if any, research is done for P/P.
I won't quit til they fix me so they can bring it on.
Karyl

Thursday, February 08, 2007

Just got back from Dr M's. He's aware of some drug that should be out in 6-7 months and trials are looking good. He didn't give a name. He asked me what do I want to do, I said I want to walk, with a tear coming down my cheek. His assistant and nurse cried too. Touchy moment. He wants me to keep the port in which means I need to go get flushed once a month. Then when this other drug is out I can try it. It must be given IV, I want to do something now and he gave me a prescription for Adderall and Singular. They both are anti inflammatorys. Steroids without the bad stuff? I'll try dirt. We shall see.
Hugs
Karyl

Saturday, February 03, 2007

It's always darkest before the light......... I found the light, his name is David. When God shuts a door, He opens a window, He did, and there was David. I would have no hope if not for him.

I have gotten used to the fact there is nothing out there YET that can help, and tried not to dwell much on my last appointment. However, all the new info did keep replaying in my normal brain. Gotta brag about something's that's normal.

On Friday I called David to tell him about my appointment. He told me his friend, Dr Murray, who was the director of the Rocky Mountain MS center now in private practice, has put 5 patients on Tysabri. Two were allergic, one her insurance wouldn't approve, and two are status quo. He said Tysabri is not the strong/great drug he thought it might be and its a big disappointment. I felt better all ready. I had my heart set on that drug because of what David told me, its a good drug, so I guess things change.

He didn't seem as surprised with my P/P title, he is not a neurologist so not caught up in the categories. It's my neuro that should have told me. David is developing a drug, my drug, to treat symptoms, and those haven't changed. This will be the first drug for P/P patients and I hope he makes millions. He was very upset with the way I was treated at the hospital. It wasn't their fault, I couldn't find a nurse to help me and didn't feel like waiting around, just wanted out, hence I got cold feet, puts a whole new meaning to that phrase.

David told me not to even think about Dr. Corboy any more and he changed the subject to football, and the super bowl. That took us happily down a whole nother road.

I'm back on track and need to keep focused that I have David working on that miracle I need. I'm sure he'll come through. Thanks for your support, it means a lot to me.
Hugs,

Karyl

Thursday, February 01, 2007

I got a shock yesterday. I'm now primary progressive, and the 3rd neuro turned me down for Tysabri. Now I know why. My neuro never told me I was P/P. So now I need to get another game plan to get through this nightmare. I'll probably pull my blog off this site, not sure how but I'll figure it out. Good luck everyone with your Tysabri treatments, you're very lucky.
Karyl

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