Sunday, May 23, 2010

More Ampyra...

I am giving it another try after a few days off. Now that the weather is in a more stable pattern, I will try taking only one pill a day, starting today, now that my IVIG flu is over, probably about 10 AM so it will last through my working hours and be gone by the time I hit the bed at night. That way I might sleep and gain the benefits of the drug. So many people on Patients like Me forum are having great success with Ampyra.

I have to say, it does help me move better. Legs feel less like concrete pillars and more like legs. Some how I will figure out a way to lessen the nerve pain, but it might take care of itself after a while. I just cannot stand not being able to walk the block, or go out with my family and friends.

Everyone is having a great time in Galveston this weekend and I am stuck at home watching the Astros try to win a game. Unlikely but possible.

Tuesday, May 18, 2010


Well, finally after a month, I finally got the drug, Ampyra. I started taking it on May 5, so its been one week. One week of ups and downs and finally a major down. I am really disappointed and sad that I am having such miserable side effects and that its really making me feel worse than before.

It does help me walk a bit better, but makes all my nerves burn like they are on fire and makes the spasticity worse. I seem to have a good day then a rotten day then a good one then rotten. Today, if you haven't guessed is awful. I cannot get off the recliner and am very discouraged.

Plus the AC died over the weekend so its hot and stuffy but tolerable with numerous fans in the living room which we move to the bedroom at night. I haven't slept well the last week either. The nerve pain wakes me up at 2 or 3 in the morning and I don't sleep well after that. Probably why I am so tired and sad.

So much is happening in the family right now and it makes me so sad to miss the fun because I can hardly move. Prom is this weekend, Graduation next weekend with family coming in to join the celebration. And I cannot do anything to get ready. Physically I am going down hill and hating it.

Just found out my PA at the Neurologist office has left. She was my rock. The other PA left about a month or 6 weeks ago and I loved her too. Now what? I am scared I have no Neurology support and that is unnerving.

My hands hurt. I have to go before they seize up totally. But the magnolias are in bloom!

Saturday, May 1, 2010

May Day!

Wow, I missed the whole month of April! I have been really busy with video projects and we took a short vacation in the RV to Medina so Dennis could ride his motorcycle with the boys.

Weather in Medina was ideal; cold night and warm days, dry air and clear skies! Such a great change from Houston with its muggy weather. :) So glad I went even if it about did my knees in getting in and out of the trailer.

We took the dog and he was a perfect traveler and companion, very undemanding and easy going.

While the boys rode, I worked on my pictures for the tennis team and video project for a friend's daughters graduation. I was busy. I also rested a lot. After the boys got back, Dennis generously took me sight seeing. There were deer, antelope, buffaloes, zebras, and other exotic animals behind tall fences on a few large ranches. The wildflowers were vibrant and plentiful too. Bluebonnets were finished but coreopsis, purple verbena and other yellow flowers took center stage. Gorgeous.

Now back to working frantically on video projects.

Health wise, I missed a session of IVIG and am feeling it. My body hurts all over and I am a bit depressed about that. Stiff and sore is my motto these days. Went to the pain doc who prescribed Trileptal for the pain so today I am giving it a start. Didn't want to do it while I was in the creative phase of the tennis banquet video in case it brain wiped me like Neurotin and Lyrica. Now that I am working only on technical stuff for the DVD, I can handle being a bit brain dead and sleepy. And I am.

If this doesn't help with the pain, I also have a script for Duragesic patch, which is fentynal, a synthetic narcotic like morphine. I hope I don't have to go that route.

This week I have an appt with a Psychologist who only works with chronic illness and pain patients so I hope we can find a decent perspective for me. I am depressed I have to miss all my daughters events outside since I cannot stand the heat and cannot stand for any length of time.

That's enough whining for now. I need to get on with work.