Saturday, December 19, 2009

10th Tysabri went well yesterday.  Next Infusion Jan. 15, 2010.

Saturday, November 21, 2009

9th Tysabri infusion went well. she got the vien on the first attempt.

Saturday, October 24, 2009

Finished 8th Tysabri infusion yesterday. Got the needle in the first time! Not dead yet.

Sunday, September 27, 2009

Finished 7th Tysabri infusion Friday 9/25/09. Went well. Met people who would have traded places with me, I needed that reminder!

Friday, September 11, 2009

MRI of my brain again today, still there. I want to read the report and see how it's going. I know on my last one she could see atrophy and a few new lesions. Hope these infusions are helping. I have an appointment with her October 1st.

Saturday, August 29, 2009

Finished 6th Tysabri infusion Yesterday. Went well. I have yet to notice any difference, but I also haven't had any relapses either.

Sunday, August 2, 2009

Finished 5th Tysabri infusion yesterday, ho hum. They only had to dig twice this time.

Sunday, July 19, 2009

Had Dr. Fodor apt. 7/16/09 in Colorado Springs, she said I was doing great. I disagree. My walking skills continue to get worse. She was mainly referring to the stiffness of my legs, that doesn't help me walk however. It is summer and the heat totally wipes me out, so that's part of it I suppose........

Saturday, July 4, 2009

Had 4th Tysabri infusion 7/3/09. Had to try 3 times to get a vein. Found vein in bicep. Went well, no side effects.

Sunday, June 7, 2009

3rd Tysabri infusion 6/5/09. It went well, still no side effects.

Saturday, May 9, 2009

2nd Tysabri appointment was 5/8/09, went well, no side effects again. Had to try 3 times before they got a good vein. That's OK, every nurse has that happen once in a while! Hope it didn't ruin her day. A second nurse was able to get number 3 in my left hand.

Saturday, April 11, 2009

Received first Tysabri infusion yesterday. Went smoothly, no side effects as of yet. Next appt. 5/08/09 @12:30.

Friday, April 3, 2009

Starting on 29MAR09 started getting a cold. Missed all but 3hrs of work this week. Wednesday April 1 couldn't get out of bed at night. Struggled to get out of bed in the morning. Thursday I went to work for 3hrs, that was in for the whole week. Doing better now, getting over the cold, but still fatigued.

Wednesday, March 25, 2009

First Tysabri infusion April 10, 2009 at 12:30pm in ABQ. Was told it will last 4hrs this time, then two hours every 4 weeks after that. Was told to bring the film of my last MRI and it's associated report. The game is on!
More info. on the drug see:

Friday, March 20, 2009

Got the ball rolling for my next step in my MS journey. Went to the Tysabri web site and found sites licenced to do the infusions within 100 miles. A Santa Fe site was listed, so I called Tysabri people and said I have not been contacted yet, but I should be getting a call from you soon. When I got home, I got the call, they said Santa Fe was out of the question. Seems you need to have a doctor on the site, and he needs to recommend you. He then called my Neurologist in Colorado Springs and they recommended Presbyterian infusion center in Albuquerque, seems they have a good connection with them and they have a doctor on the site for the infusion, and post infusion monitoring, sounds good all the way around to me. Presbyterian should be getting in contact with me on Tuesday....

Sunday, March 1, 2009

Saw my neurologist in Colorado Springs Friday and she saw I'm doing worse, even after my 5 days of infusions of solu-medrol steroids. It was decided to put me on Tysabri or natalizumab (nat ta LIZ yoo mab). I will wait to see where the company will infuse me, hopefully Albuquerque. I will still need to see my neurologist in Colorado so she can monitor me closely. There are risks to this medicine, i.e. TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML), an opportunistic viral infection of the brain that usually leads to death or severe disability. Although the cases of PML were limited to patients with recent or concomitant exposure to immunomodulators or immunosuppressants, there were too few cases to rule out the possibility that PML may occur with TYSABRI monotherapy.

Wednesday, February 11, 2009

I was to have an appointment with Dr. Fodor tomorrow 2/12/09 in Colorado Springs. I called up there to confirm, they said they were about to call me to reschedule. Dr. Fodor called in with pneumonia today, we decided it would be best to reschedule, she probably won't be in! Made an appointment for 2/27/09 @3:30pm.

Sunday, February 1, 2009

Left church and couldn't make it to my car, Kathy Gillespie kindly helped. Stumbled out of my car when depositing money at the bank, took 10min. to get back in my car. Kathy helped me get in the house, then crawled to my Lazy boy chair. I will sit here for a few hours recovering. Probably stood to long at church. A member of our church was having chest pains and 911 was activated. I stood the whole time in case I could be of any assistance, I know that can wipe me out. The member went to the hospital and is now at home.

Friday, January 30, 2009

Had the pleasure of talking with Normae at the Colorado Springs site. She was the one responsible for getting the drugs delivered to me and have the visiting nurses serve me, all with insurance approval, WOW. She doesn't even live here! She said of my major inability to walk, it could take up two weeks to see any improvements. She also had to change my next appt. from Feb 13 @ 1:30 to Feb 12 at 2pm. I guess I'll have to take a day of vacation.

Thursday, January 29, 2009

Did my full 9hr day! Not to much weakness....

Wednesday, January 28, 2009

Made it 7hrs today! Must be getting a little better!

Tuesday, January 27, 2009

Went to work 5hrs. today. woo hoo!

Monday, January 26, 2009

Only made 4 hrs of work today, couldn't walk. Better than nothing!

Saturday, January 24, 2009

1st infusion went well at 8:30am, IV categorization held loosely enough. Just need one last one tonight then I'm done with this series. I hope it helps, could be up to three days, I am just very fatigued now, and wobbly, will update after next infusion. Picture of the last of the 10 infusions! Went well!

Friday, January 23, 2009

Yesterday my IV catheter came, loose so all the medications went sub Q. Nurse came and noticed my arm was swollen but said the medications would absorb normally, just slowly. I was due to have catheter change today, and after four attempts here at home went to visiting nurses up town, and three more attempts got a loose one in and gave myself a bag-o-medications. Hope it hold thru Saturday night, my last treatment. Obladi-Oblada!

Tuesday, January 20, 2009

Started the first of my bi-daily solu-medrol treatments AT HOME today. Visiting nurses taught me how to do it myself and I will do this on my own for 5 days. An old friend is coming tonight to see if I learned how, Heidi Bjorklund!! Should be a pleasure. Since it is a larger dose than I am used to and am now taking Valium, a muscle relaxant, stayed home from work today. Took a test drive around White Rock, and was glad I made the decision to stay home!

Saturday, January 17, 2009

Went to Colorado Springs yesterday. Left at 5:50am returned at 11:05pm, long day! Neurologist didn't do much, confirmed I was in the middle of a relapse and prescribed a 5 day course of solu-medrol, a strong steroid, with an oral taper. I think this relapse started on 1/14/09, The MRI showed active lesions on my brain. I was also prescribed Valium to augment the Baclofen used to treat the stiffness that is mainly in my left leg. She didn't discuss my c-spine, and we are still deciding on what I should do next. I also forgot to request a copy of my blood work, Doc seemed to be concerned with it but didn't elaborate other than to say I needed to drink more water. I will request copies on Tuesday. I felt the long day really didn't accomplish much. Contemplating if there is a neurologist as competent as her closer to home, I think that would benefit both sides of the equation. I seemed to be a major inconvenience to them yesterday.

Tuesday, January 13, 2009

Had blood drawn here in Los Alamos for Friday's appointment in Colorado Springs on Monday. I was assured results would be faxed by my Friday's appointment. It Was for Thyroid, B12, and CBC.

Tuesday, January 6, 2009

I made an appointment with my neurologist in Colorado Springs today for 1/16/09 at 3pm. I have an MRI at 12:30. My last MRI was from '02. She would like the neurologist at the imaging site to do a write up of it, then, have me bring the films to her office so we can go over them together. We will also discuss what's next for me. I am also to take my '02 MRI pics for comparison, aught to be interesting. I had some atrophy then, will see if I have anything left! I was told she would like to get me on Tysabri as soon as possible, we'll see.

Thursday, January 1, 2009

Noticed, after wearing ear plugs, my ears are packed with wax! I am going to try to clean them thoroughly today... I know you wanted to read That!!