Life with MS, seeking a cure

Thursday, October 26, 2006

Hi Everybody,
I wrote yesterday but it was blown up when I tried to post it, I think they were working on the site. I didn't have anything thrilling to write, just waiting for Jan 2007 to get here so I can have Tysabri.

We got a bit of snow here in the mile high city, but the streets are clear so its just pretty to watch. On Sunday my Broncos play the Colts, should be a good game. GO BRONCOS...........
Karyl

Friday, October 13, 2006

Hello,

I just talked to David, nothing really new in Madrid with other researchers and scientists. Everyone was pitching his own new drug, a lot of talk of Tysabri. He said it takes 40-50 million to get things through the FDA but David is working with some company that is interested in his drug, Then maybe I could have it through human trials by the end of the year. Every thing is just an inch away but I'm determined to go that extra inch to get my health back. Whatever it takes.

Chuck (husband) took me down to get flushed at the IV center. The nurses were so happy to see me, I miss them too. No paper work just did a free be. Unusual in this day and age. Dr M tried to get me on a research grant but I didn't qualify. Having money and a house did me in, go figure. January will be here in no time. I will go every 3 wks to get flushed so my port doesn't clot. Not sure what my new regimen will be. David and Dr M are having dinner tonight and will discuss it.


Can't wait to read Lauren's blog about her infusion today.
Hugs,
Karyl



Wednesday, October 11, 2006

Hi everyone
It's a gorgeous crisp day here in Colorado. I've been procrastinating for a week to write my story of my scientists, so now I'm finally doing it.

I met David (scientist/researcher/doctor) through my girlfriend that also has MS. He was looking for MSers that tested positive to the parvo virus. I tested negative. A few months later, in a crazed mood to be cured, I called David and said I know I didn't qualify for his study but could he introduce me to the people in stem cell research, as he pointed them out to me when I went to meet him. He said he would BUT before I do that he thought he had something that might help me. A few months later I was taking some type of gold liquid, twice a day. I started walking more with my walker, got up to 1000 feet a day. After 6 months it stopped being effective and I slowly went back to where I was, 50 feet a day. From that he got lots of info from my blood tests. That was three years ago. He has now made a pill that is back at the FDA for approval for human trials. He has completed the animal testing. The rats were given EAE, crippled with the MS virus and after a month of this drug were up and running. I will be the first one to try this drug once the FDA gives approval. It appears safe and no side effects. That's my hope for 2007.

David's friend, an Immunologist, has been giving me IVIG treatments, every 3 wks for three days for a year and a half. They both believe MS is an immune system gone nuts and are trying to get mine to act normal. I totally believe in these two men and feel so blessed to have found them, by accident.

They both attended ECTRIMS in Madrid, Spain and will have new things to try when I get back to them. No thanks to my insurance screw ups. I am a volunteer with David but I use insurance with the Immunologist. So much hope for the coming year, and Tysabri too. Both doctors have told me for years, Tysabri is a good drug.

Hope your all doing well.
Karyl

Friday, October 06, 2006

It's Friday and I've been a busy girl.

Life is almost back to normal. I now have Medicare as of October 1 and will start BC/BS of Colorado January 1, which at that point I'll go back to my Immunologist. He's checking to see if he can get me in on one of his research grants, if he can I'll go sooner. I am anxious to talk to David hope he calls soon. Meanwhile, I've read about all these new oral drugs coming out for MS. Somethings gotta help soon.

I will fill you in on who David (Dr/Researcher/scientist)is and my Immunoogist in another post, I'm kinda tired tonight. They both attended ECTRIMS in Madrid, Spain last week (ECTRIMS 2006 - 22nd Congress of the European Committee for Treatment and Research in Multiple Sclerosis) and will have much news to tell me when we speak.

Here's to the cure,,,,,,,,,,cheers.
Hugs to you all
Karyl

Sunday, October 01, 2006

Hi everyone,
My second post, woohoo. lol I hope to help, educate, inform, entertain and explain MS and how it has affected my life, from my perspective, with my innate sense of humor. I hope I don't offend anyone and if I do please let me know. Please be kind.

Last Thursday, my husband came home from work and handed me a package for our new insurance, NEW INSURANCE???? His company cancelled Cigna and went with Kaiser and it was effective Oct 1, yes, that's today. I instantly panicked as I have been with the same doctors, Internist, Neurologist, Gyno, hospitals, for 14 years and now I can't see any of them? AND the prescriptions? And how do I pick a doctor I don't know? AND the prescriptions? And where is the hospital I now have to go to? AND the prescriptions? Will I be able to get Tysabri? AND the prescriptions? OK, you get the picture.


Having MS does not help this situation. I panicked because for one thing I don't get around well and to fill out all the forms is hard to do, my printing is second grade at best, then to get used to a whole different staff and explain my situation to a whole new crew. It somewhat overloaded me. Do ya think?

Now I've calmed down and have read the brochure, filled out the applications, picked out my PCP, innee-minnie-minee-mo. I guess it's really not an issue. I've been trying to get Tysabri and finally was approved and waiting for an appointment, so I guess I'll just start over. I might have over reacted, perhaps some of the effects of MS or any chronic disease. I will be glad when it's gone, good riddance.

Tomorrow, I will work on getting an appointment with my new PCP, picking a neuro and finding out where their infusion center is and if they are enrolled in TOUCH program. I've got a list of my prescriptions to take to my new PCP. I hope things go smoothly and will let you know.
Hugs to my blog buddies,
Karyl