Tim's Medical Blog

2011-11-23T14:33:00.002-07:00

27th Infusion 7/15/11

WBC 13.3 (norm 4.0-10.6)

28th Infusion 8/12/11

WBC 12.0 (norm 4.0-10.6)

29th Infusion 9/9/11

WBC 13.2 (norm 4.0-10.6)

31st Infusion 10/7/11
no infusion rejected due to prostate induced bladder infection.
&; 11/18/11 Rejected WBC 13.2 (norm 4.0-10.6)

26th infusion.

2011-06-20T15:09:00.000-06:00

26th Infusion was on June 17th @ 2pm. Infusion went swell.

25th Tysabri infusion.

2011-06-02T15:43:00.000-06:00

Was on May 20th at 2pm. went well. Late entry.

24th infusion.

2011-04-25T08:58:00.001-06:00

My 24th infusion was on Friday April 22nd , went well. Nurse asked if I was sick. I said no. Nurse informed me I had an elevated white blood cell count. Next day I started to get sick an now me and my family are all sick. I guess my white blood cell count was telling us something!

WBC 14.3 (norm 4.0-10.6) Highets yet.

2011-03-26T12:00:00.001-06:00

23rd Tysabri infusion Friday March 25 at 2pm. Went ok, Came out half way through, re-tapped on left arm to finish.

22nd Tysabri Infusion.

2011-02-28T09:25:00.002-07:00

Not dead yet.

21 Infustion.

2011-01-17T11:03:00.002-07:00

Went well.

2010-11-22T09:32:00.003-07:00

Had Blood drawn on Monday, I received my 19th Tysabri infusion 2pm on Friday 11/19, also had MRI in a.m. She dug for vein because I stupidly forgot to get extra hydrogenated to raise my vein's. Still have a wonderful bruise. A woman a few beds across the room from me was screaming In pain when they were trying to find hers. She was receiving something to help for a problematic pregnancy or something.

2010-10-09T19:23:00.000-06:00

19th Tysabri infusion yesterday, all went well. It was told to me Tysabri would nullify flu shot. They told me they would get a hold of my neurologist for clarification.

infusion.

2010-08-28T08:54:00.000-06:00

I had my 17th Tysabri infusion yesterday, it's starting to feel routine. Had a visit with my new neurologist, I think I going to really enjoy her. Also a professor at UNM, so she very up to date. The new neurologist also got the ball rolling on my Amphera prescription, She also showed me a better external cathater than the one I was contemplating. She couldn't get it off the model it was mounted on so she started yanking on it and was saying "It's to sticky" I manged not to to bust into laughter, but you got to admit it was very hilarious!

1

2010-07-17T17:57:00.000-06:00

17th Tysabri Infusion yesterday. Went well. Fell asleep the first hour. Staff was exited that I changed my Neurologist to Dr. Edmunds.. Many went to a presentation of her's at UNM and thought she was very upbeat and knowledgeable. That makes me exited and happy.

2010-06-09T07:16:00.000-06:00

Late entry: June 4 had my 15th Tysabri infusion. Every thing went well.

2010-04-24T11:36:00.000-06:00

4/22/10, Thursday, on earth day :-/ saw my neurologist in Colorado Spring, we discussed my MRI, and I read the report, and view the photos. The number of lesions on my brain had decreased significantly as compared to the previous MRI and atrophy slowed, praise God indeed, thanks for your prayers! Also received a prescription for Ampyra recently approved by the FDA to help gait and cognition, I had researched Ampyra on the MS society's web page and the FDA report. The doctor prescribed it to me and I should hear fron the manufacturer in 3-4 weeks. I also had my 14th Tysabri infusion on Friday.

2010-04-08T19:23:00.000-06:00

Had my millionth MRI today, got pictures and a cool CD! I should get a frequent rider discount!!

2010-03-13T09:48:00.000-07:00

14th Tysabri infusion yesterday. She couldn't get the vein in the left arm, I nearly passed out. Got he vein in the right arm just fine. Kathy then wanted to go shopping. She also wanted to go to Cracker barrel at 9:30 pm, we got home at 1am this morning! The kitten woke us at 7am by destroying the lamp by her bed. Tysabri, and the prior two events leave me wiped out.

2010-02-13T10:02:00.000-07:00

Finished Tysabri Infusion 12 yesterday with no hitches. Still have awfull thrush.

2010-01-15T20:51:00.000-07:00

Saw Docotor Fodor in Colorado Springs yesterday, She said my blood work looked excelent! Had my 11th Tysabri infusion today, got last minute approval from my new heath insurance carrier, whew, that was close! a lot of time on the road the last few days, really saps whats left of my strength... Still enjoyable to see ...God's beutiful creation! I'm sure God is thinking "you haven't seen any thing yet!!"

2009-12-19T10:21:00.002-07:00

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

2009-11-21T10:10:00.000-07:00

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

2009-10-24T10:22:00.001-06:00

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

2009-09-27T17:53:00.001-06:00

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

2009-09-11T18:32:00.000-06:00

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.

2009-08-29T11:49:00.002-06:00

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

2009-08-02T16:42:00.001-06:00

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

2009-07-19T18:25:00.003-06:00

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........

2009-07-04T15:08:00.002-06:00

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.

2009-06-07T15:36:00.001-06:00

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

2009-05-09T10:31:00.005-06:00

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.

2009-04-11T18:26:00.002-06:00

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

2009-04-03T17:52:00.002-06:00

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.

2009-03-25T13:52:00.005-06:00

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:
http://www.tysabri.com/

2009-03-20T17:04:00.002-06:00

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....

2009-03-01T19:22:00.005-07:00

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.

2009-02-11T15:08:00.002-07:00

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.

2009-02-01T14:38:00.004-07:00

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.

2009-01-30T17:07:00.002-07:00

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.

2009-01-29T16:10:00.000-07:00

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

2009-01-28T14:53:00.000-07:00

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

2009-01-27T12:05:00.000-07:00

Went to work 5hrs. today. woo hoo!

2009-01-26T11:19:00.001-07:00

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

2009-01-24T16:19:00.014-07:00

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!

2009-01-23T15:50:00.003-07:00

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!

2009-01-20T18:13:00.004-07:00

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!

2009-01-17T16:25:00.009-07:00

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.

2009-01-13T10:15:00.002-07:00

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.

2009-01-06T15:06:00.005-07:00

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.

2009-01-01T10:00:00.001-07:00

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!!

2008-12-31T12:59:00.002-07:00

Walking much better. Woke with numbness on right ear again, but walking o.k I suppose.

2008-12-29T17:16:00.001-07:00

12/28/08 Woke with numb right ear, some hearing loss. Walking bad, missed church. Have been getting 5-6 hrs sleep due to me forgetting a refill of a perscription.

2008-10-25T12:21:00.007-06:00

OLTERMS Timeline

• Friday 5/9/08 Last Phase IIb Visit, First ext. study visit. Did MRI, peg test, math test, speed walk test, pee, MSQLI, and 13 vials of blood. EDSS 2.0!?!
• 5/27/08 Received notice I’m MRTC positive from 5/9/08 appt. awaiting blood draw appt.
• 7/2/08 Opexa called for med. survey, said Life Blood Biologic would call within a week for the big blood draw appt.
• 7/17/08 2pm Blood procurement to make vaccine.
• 9/10/08 Got call that vaccine ready.
• Made appt. for 10/10/08 1:30pm appt to receive 1st vaccine.
• 9/16/08 appt for vaccine delayed indefinitely due to hurricane Ike’s impact on Houston.
• 9/25/08 Made new date for first shot, 10/24/08 1:30pm
• 9/31/08 Found out I was on Tovaxin during the study.
• 10/24/08 1st Tovaxin shot of OLTERMS. 17 Vials of blood, Pee. No MRI.
• 11/21/08 2nd Tovaxin shot of OLTERMS. No Blood, No Pee, No MRI. Just Shot.
• 11/24/08 OLTERMS shut down. :-(

2008-07-15T09:33:00.017-06:00

TERMS Trial Timeline.

Wed 9/13/2006 Last Rebif injection!
Fri 9/15/06 Signed consent forms at Dr. for Tovaxin trial.
Tues 10/31/2006 Vial blood draw for MRTC’s --Negative.
Fri 12/8/2006 2^nd Vial blood draw for MRTC’s. --Positive EDSS 3.0.
Wed 1/17/2007 Blood draw to make vaccine. MRI.
3/2/2007 started a bad relapse.
3/8/07 Saw local neurologist about bad relapse.
3/8-3/10 2007 received 3 day course of IV Solu-Medrol, 1gram per day without oral taper. 30 days until re-evaluation to see if this made me stable.
Mon 3/12/2007 received the useless MRI in Los Alamos.
Fri 3/16/2007 Saw Dr. EDSS 5.0.
Wed 3/28/2007 10 weeks since blood draw to make vaccine.
Mon 4/9/2007 30 day mark since last infusion.
Tues 4/10/07 Dr. found me stable. EDSS back to 3.0. Vaccine ordered from Opexa. Was told I will get MRI, tests, blood, pee, and vaccine!?! 5/3/2007.
5/3/07 received first ‘Tovaxin’ shot @13:09. Did MRI, peg test, math test, MSQLI, speed walk test, pee, and 19? vials of blood. EDSS 3.0. (Visit 4)
5/9/07 Second ‘Tovaxin’ shot scheduled 6/7/07. Told no MRI.
5/17/07 Opexa announced the 150 patients needed have now been enrolled.
6/7/07 received second ‘Tovaxin’ shot @11:56 No MRI, peg test, math test, speed walk test, pee, and 13 vials of blood. (Week 4/Visit 6) EDSS 3.5
6/11/07 Trial coordinator said the study monitor inquired about allergies.
Third ‘Tovaxin’ shot scheduled for 7/6/07. 10am MRI check in, 13:30 appt at Dr.
7/6/07 10:00 MRI 13:30 appt at Dr. Did MRI, peg test, math test, speed walk test, pee, and 13 vials of blood. Received third ‘Tovaxin’ shot@ 14:16 EDSS 3.5.
Forth ‘Tovaxin’ shot scheduled for 8/3/07. 10am MRI check in, 13:15 appt at Dr.
8/3/07 10:00 MRI 13:15 appt at Dr. Did MRI, peg test, math test, speed walk test, pee, MSQLI, and 13 vials of blood. Received forth ‘Tovaxin’ shot@ 14:30 EDSS 3.5.
Saw Dr. 10/12/07 at 13:30 about a difficulties in gait since 10/1/07. Got even worse 10/8/07, Recommended Solu-Medrol treatments. EDSS 6.0, Got infusions 500mg b.i.d., 10/16 – 10/18, Solu-Medrol pack for 6 days following this. Last pill taken 10/24/07.
Fifth, and last, ‘Tovaxin’ 10/25/07. Peg test, math test, speed walk test, pee, no MRI, 13:15 appt at Dr. EDSS 4.0. 12.5 Vials draw was a hard draw due to Solu-Medrol infusions, 6 sites. Normally give 13 vials.
Dr. 11/20/07 1:45, MRI 11/21/07 at 11:00 13 Vials of blood, easier this time. . Peg test, math test, speed walk test, pee. EDSS 3.5.
Dr. 1/18/08 13:00, MRI at 15:00. 13 Vials of blood, much easier this time. Peg test, math test, speed walk test, MSQLI, and pee. EDSS 3.5.
‘Spinal Event’ 2/12/08 a.m.
Dr. 3/14/08 13:00, MRI 15:00. 13 Vials of blood. Peg test, math test, speed walk test and pee. EDSS 3.0
Last Phase IIb Visit Friday 5/9/08. 13:00.
Friday 5/9/08 Last Phase IIb Visit, First ext. study visit. Did MRI, peg test, math test, speed walk test, pee, MSQLI, and 13 vials of blood. EDSS 2.0!?!
5/27/08 Received notice I’m MRTC positive from 5/9/08 appt. awaiting blood draw appt.
7/2/08 Opexa called for med. survey, said Life Blood Biologic would call within a week for the big blood draw appt.
7/17/08 2pm Blood procurement to make vaccine.
9/10/08 Got call that vaccine ready.
Made appt. for 10/10/08 1:30pm appt to receive 1^st vaccine.
9/16/08 appt for vaccine delayed indefinitely due to hurricane Ike’s impact on Houston.
9/25/08 Made new date for first shot, 10/24/08 1:30pm
9/31/08 Found out I was on Tovaxin during the study.