-
1 month agoWithCourage2008 posted:
Tysabri 30: I have had 30 infusions over a 2 and 1/2 year period. My last relapse was January 2009. 3 stable years :)
-
1 year agoWithCourage2008 posted:
Tysabri 19. I'm taking part in the Stratify Tysabri study. I had a JCV Antibody blood test and I tested positve for antibodies to the JC virus (I have the the virus). 70% of ppl have it. When the virus is activated, you get PML. The study is still recruiting participants. For now, I am staying on Tysabri bc I have been in remission for 1 year and 5 months on it. The other day, I walked 1 mile and a 1/2 (w/ a limp) and needed assitance only towards the end. Ampyra and Tysabri are working for me.
-
1 year agoWithCourage2008 posted:
Tysabri 18. Rough day emotionally. I took the long way home and walked over 2,500 steps (in the dark) with a limp but with ease. Left leg is still significantly weaker. Tysabri and Ampyra are working together to help me walk farther. Ampyra helps with my foot drop and more! Can't wait to make a video on Ampyra!! I ran a little over 90 steps a couple weeks ago with a limp (thnx 2 Amypra)! Recent MRI showed no new activity since 1/26/2009. 1 year and 9 months!!! That is a huge accomplishment!
-
1 year agoWithCourage2008 posted:
After Angela (angelusa73) got dxd with PML due to Tysabri, I realized how important it is for me to put a disclaimer on my experiences with the drug! Tysabri comes with a SERIOUS risk! To date, there are 70 confirmed cases of PML out of about 71,000 people on the drug. Your risk of PML increases with time. Please, always weigh your pros and cons when considering Tysabri! This a temporary treatment for my ms. That being said, I ran today (first time since 2008). 17 days on Ampyra.
-
1 year agoWithCourage2008 posted:
Tysabri 17 today. Doing good :) Walked 2,600 steps (with a limp) and did not sit to rest. Realized that I can walk pretty far lately. The main problem now is my limp! On October 1st, my new insurance started. Guess what?? Ampyra was sent to my house overnight! This insurance gave me NO PROBLEMS! Now Ampyra is sitting on my table waiting to be taken. I am nervous and excited!
-
1 year agoWithCourage2008 posted:
Today, I found out that I was denied Ampyra by my insurance company :( They said they don't think it's medically necessary. I think they just don't wanna pay an extra $1,000 per month.
-
1 year agoWithCourage2008 posted:
While looking through my closet today, I came across a foldable cane I bought over 1 year and 1/2 ago. I had used it only once (beginning of 2009) mainly bc my pride wouldn't let me use it more often. That day, it was raining and I had covered my face with my umbrella. I couldn't believe I had gotten to that point. WOW! I haven't used that cane since! I had even forgotten I have it :) I still have my limitations (500 meters??), but I feel stronger and more independent.
-
1 year agoWithCourage2008 posted:
Tysabri 16! Got it!!! After a bureaucratic nightmare, I finally got approved for state health insurance! I won't need it next month bc my new health insurance from my new job will kick in =) Did cardio on the elliptical (1.33 miles in 30 mins)! Piece of cake =)
About "Courage consists in equality to the problem before us."
Created by
WithCourage2008Latest Activity
Jan 15, 2012Date Joined
Jul 3, 2009About this user
I am 23 years old and I have had ms since I was 18. I was diagnosed at age 20. I am here to share my experiences with others._____________________________
My camera broke so I can't make video updates until I get a new one. After each infusion, I still posted bulletins to keep you updated. Here are some of the ones I was able to recover from youtube (they in reverse chronological order):
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
12/09/11 I recently got my MRI results! I am still stable! What a blessing!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 29 (12/03/11). My optometrist said my left eye went from 20/40 (in 2009) to almost 20/20 (today). Amazing!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 28. I am doing my infusions every 6 weeks and it is working for me.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 27. I have decided to start getting my infusions every 6 weeks. I have heard of other people getting their infusions less often than normal.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
9/2/11. Exactly 3 years ago, I was diagnosed with ms. It has been quite a journey. I can't help but reflect.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 26. I saw my neurologist recently and told him that I have been taking Tysabri every 5 weeks. He said that I can continue doing that since it has been working for me. I have also started taking Provigil and Detrol.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Today is 7/16/11. 2 years ago, I started Tysabri. At that time, I was barely managing without a cane. I knew that if I were to have another significant relapse, I would have to start walking with one. I have worsening relapsing ms. That is why I took a chance/risk. I have not had any relapses these past 2 years and don't use a cane. Tysabri gave me a second chance. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 25. On purpose, I had my infusion 1 week late again. I will continue getting it 1 week late until further notice. I can't believe July 16th will be 2 years since starting Tysabri. I will enter the "Danger Zone"...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 24. I decided to get my infusion a week late again. I still feel the same way as usual. Bracing myself for the hot summer ahead!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 23. I feel good :-) Even though I had my infusion a week late, I didn't feel much of a difference in my symptoms. Now I am off to the Caribbean to celebrate my birthday!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 22. My MRI showed NO new lesions! My neurologist was very happy with my progress! He kept smiling =) I'm still hanging in there!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 21. Still working full time! I'm up and about most of the day (thanks to Tysabri AND Ampyra). I'm trying my best to live a normal life despite my challenges.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 20. Still stable :)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 19. I'm taking part in the Stratify Tysabri study. I had a JCV Antibody blood test and I tested positve for antibodies to the JC virus (I have the the virus). 70% of ppl have it. When the virus is activated, you get PML. The study is still recruiting participants. For now, I am staying on Tysabri bc I have been in remission for 1 year and 5 months on it. The other day, I walked 1 mile and a 1/2 (w/ a limp) and needed assitance only towards the end. Ampyra and Tysabri are working for me.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tysabri 18. Rough day emotionally. I took the long way home and walked over 2,500 steps (in the dark) with a limp but with ease. Left leg is still significantly weaker. Tysabri and Ampyra are working together to help me walk farther. Ampyra helps with my foot drop and more! Can't wait to make a video on Ampyra!! I ran a little over 90 steps a couple weeks ago with a limp (thnx 2 Amypra)! Recent MRI showed no new activity since 1/26/2009. 1 year and 9 months!!! That is a huge accomplishment!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
After Angela (angelusa73) got dxd with PML due to Tysabri, I realized how important it is for me to put a disclaimer on my experiences with the drug! Tysabri comes with a SERIOUS risk! To date, there are 70 confirmed cases of PML out of about 71,000 people on the drug. Your risk of PML increases with time. Please, always weigh your pros and cons when considering Tysabri! This a temporary treatment for my ms. That being said, I ran today (first time since 2008). 17 days on Ampyra.