Life with MS, seeking a cure

2007-02-18T14:56:00.000-07:00

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

2007-02-08T13:47:00.000-07:00

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

2007-02-03T16:15:00.000-07:00

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

2007-02-01T18:00:00.000-07:00

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

2007-01-24T17:31:00.000-07:00

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

2007-01-21T13:41:00.000-07:00

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

2007-01-14T11:37:00.000-07:00

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

2006-12-25T15:45:00.000-07:00

Life with MS, seeking a cure

Christmas Day, I'm waiting patiently for my Tysabri. I got my port flushed last Friday and my immunolgist is anxious to get started with me in January. I've got my neuro appt for Jan 10 and with the infusion center Jan 11, I am very ready.

After reading Lauren's blog I'm so thrilled to get a few infusions under my belt and get this show on the road, I'm tired of sitting around. It's time to walk.

Karyl

2006-11-26T12:14:00.000-07:00

I'm still around, no falls since I last wrote, so that's a good thing. Had a quiet Thanksgiving, I don't have much family. Just my hubby, son and daughter. My 21 yr old son came home from college with a 90 pound pit bull. My three cats freaked. Amazingly, he is the most well behaved, loveable dog I've seen. I feel bad calling him Killer dog before I met him. Shame on me.

I'm going to get my port flushed Monday to keep it open for when I start Tysabri in January. I've been off the IVIG for two months and I feel I'm a little worse. I have great hope for Tysabri.

Karyl

2006-11-10T11:28:00.000-07:00

I so hate this disease, I can't tell you how much.

Today was a day from hell, sorta. I got up early and went directly to the shower, thought I was doing so good. Then I got out, I usually sit on the toilet, rest and get dressed and then go to my recliner. Today, I thought I would try to get out of the shower, NOT REST, and go directly to my recliner. BAD IDEA. I got about two feet from the recliner was turning around and my feet got totally fatigued, wouldn't move for nothing. BOOM, I went down. All I could think is crap, I can't break anything I don't have insurance. I landed and was dizzy and just rested while I cooled down. My cats all kept me company. After 30 minutes of relaxing naked on the floor I did the 911. They were here soon and again I worship these paramedics. So professional to the disabled and naked. They got me to my recliner. I am just a little stiff and ackey tonight. I didn't even cry today, usually I do just from the embarrassment, today, nothing. I'm getting used to it I guess. Still VERY frustrating.

I talked to David yesterday, he doesn't sound to excited about when if ever I'll get his drug. Makes me wonder but I still believe in him. There are a lot of new drugs soon to come out. I'm going to try them all.

I've had a horrible time trying to post here and I miss my ole buddy Michael, where did you go?
Love
Karyl

2006-10-26T17:33:00.000-06:00

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

2006-10-13T18:27:00.000-06:00

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

2006-10-11T15:08:00.000-06:00

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

2006-10-06T16:57:00.000-06:00

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

2006-10-01T16:07:00.000-06:00

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

2006-09-30T12:09:00.000-06:00

Hello. and welcome to my blog. I never thought I'd have one but it seems with all that I've been through maybe this will be a great outlet to the frustration I feel day to day. Are you with me?

My name is Karyl Faller and I live in Littleton, Colorado. I am 49 and was dx 11 years ago. I have been married for 26 years to Chuck, and have two children, Jennifer 23 and Charlie 21.

I have tried Betaseron for 4 years and it did nothing to slow down MS. I tried Novantrone but only had 3 or 4 infusions before my neuro took me off it. Then I tried Copaxone and never felt like it did anything. I took it for 5 years. Depending on which neuro I see will be what I am, ie R/R, SP,PP etc. I started IVIG treatments a year and a half ago and had an MRI last March and I am stable for the first time in 11 years. I stopped taking Copaxone last December in preparation for Tysabri. I want to give this drug a chance. I will try anything that has one ioda of possibility to help me.

Basically, I am crippled. I use a walker to pivot from my bed to my recliner and for short walks of 50 ft or less. I use a Jazzy around the house and a scooter outside the house. I am home bound most days (not fun) except when I go to the doctors or for infusions. This is not living with MS but rather life with MS. Life is what you make it and I am determined to be cured. I will not rest, I will not fear, I will not tire, til I'm cured.

In my coming posts I'll keep you informed of my quest for a cure.
Karyl