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