Here at the infusion center for my 2nd Tysabri treatment for Multiple Sclerosis. So far so good. Seems time flew by since last month’s treatment. I can’t say i feel much different or better but I can feel different feelings on the right side. I have had success with physical therapy. Stretching and core strengthening is helping with balance and mobility.
I hope to see some positive changes to come!
Ok – so 2 days after the infusion and I feel “changes” for the better. I dont want to jinx it but have some questions. My right side is affected by my MS and I have Foot Drop (have to use a WalkAide), balance issues and right arm/hand range of motion/strength issues.
My hand feels stronger and my range of motion has increased. I can’t tell much with the leg/foot although things feel “different”. With MS I felt everything progressing in the wrong direction (I’ll call this white to dark gray). I’m feeling the dark gray getting whiter. Don’t know how else to explain.
My questions:
-Will I be “jonesing” for my next infusion?
-Will things progress positively for a week or two and then go backwards as the medicine wears off?
-Does the Tysabri “wear off”?
-When I had optic neuritis, I had a 3 day drip of solumedrol (steroids) and my vision went from 15% back to 90-95% and has been “good” with out issue for the past 2 years. Is Tysabri like steroids in this regard?
What have you all experienced while on Tysabri? Right after the infusion? 2 weeks after? 1 month after? Just prior to next infusion?
Yesterday’s infusion went off without any issues. Today – Right Arm (infusion arm) feels heavy but range of motion is “different” and i feel strange tingle sensations. Walking is about the same. Tired but that’s cuz I only got 3.5hrs of sleep.
My 1st infusion of Tysabri is Tuesday the 13th after 1pm.
The administering office location I have been to before and they are very good. They are under additional FDA watch with the TOUCH (Tysabri Outreach Unified Commitment to Health) program when administering Tysabri because of the risks of PML.
I will be continuing to blog about my treatment and technology here
Today I had a fitting for an AFO (Ankle Foot Orthotic) to assist with the foot drop and walking until I can get the WalkAide.
Had a nice interview today with the National Multiple Sclerosis Society for a article on iPhone Apps, specifically i-Inject.
Thank you to all of those that have already purchased i-Inject and a big thanks to those that have given positive constructive feedback as well as suggestions for the next version.
Just got back from CBS interview. Should be on local TV at 5:30 or 6.
It was on around 5:24pm but no video has been posted to their site yet, just links:
http://www.whptv.com/content/linksinfo/story/iPhone-App-for-Multiple-Sclerosis-Patients/JLrDdQJ0PE-fRirngxBPsQ.cspx
FOR IMMEDIATE RELEASE:
iPHONE® APPLICATION DESIGNED FOR MULTIPLE SCLEROSIS PATIENTS IS LAUNCHED
Mechanicsburg, PA – 12/29/2009 – A Pennsylvania-based company has just released a healthcare management application that targets Multiple Sclerosis (MS) patients to the App Store.
David Warden, who was diagnosed with Multiple Sclerosis (MS) in 2008, created an application called i-Inject that allows fellow patients to manage details of their healthcare. The application provides a place for users to track their rotation of injection sites, set medication reminders and run various reports regarding their medication inventories and use.
“By using your iPhone® mobile digital device or iPod touch® mobile digital device, you don’t have to organize and carry paper journals. You can track your injections and oral meds and even e-mail records to your doctor, all on a device you already use every day,” David says. The application helps the user log the times and dates of drug administrations, reactions to medications and how many doses the patient has left in their inventory.
David owns Elite Circle Computing, an Information Technology (IT) consulting company, and collaborated with an application developer to bring his vision to life. Since being diagnosed and having to organize several medications and dosing schedules, David dreamed of a more technically streamlined and accurate way to manage his healthcare.
i-Inject is available for download to any iPhone® mobile digital device or iPod touch® mobile digital device for $14.99.
For additional information about i-Inject, visit www.i-inject.com.
Contact:
David Warden, CEO
Elite Circle Computing, LLC
717-796-1099
dave@elitecc.net
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Apple, the Apple logo, iPhone and iPod touch are trademarks of Apple Inc., registered in the U.S. and other countries. iPhone is a trademark of Apple Inc. App Store is a service mark of Apple Inc.
