Sunday, January 24, 2010

Ampyra-Fampridine SR - Finally approved!

I cannot wait! This drug, originating as a bird poison in Russia(?) has finally been approved by the FDA.

The majority of persons taking its precursor, 4-AP, have had almost wondrous improvements in spasticity, walking speed, pain, heat intolerance, and fatigue. I cannot wait. I don't care how much it costs, or if my insurance will help with it, but for less spasticity and stiffness, I am all for it. I will take a second on my house, sell my motorcycle (not really) and option my second born child (Only have one and she is not for sale) to get this drug. This gives me more hope than I have had in a long long time. Well only 20 months but it seems like forever.

Bring it on! Ampyra. Be the answer to my pain and stiffness!

Thursday, January 14, 2010

IViG the day after

Ouch! I only thought I was going to get off easy this month. Not so.
Today I woke up with stomach ache, creeping sinus crap and that headache is starting up too. I have hydrate and keep telling myself "Its only temporary!"

IViG also seems to make some of my MS symptoms worse for a day or so. My numb hands are about useless today. (Thank god for the backspace key and spell check!) Nerve pain is horrible in hands and feet and my chest feels full and congested. Hydrate! I had to take a half a baclofen for the muscle spasms too. Oh well, I just thought I was done with Baclofen.

So its a sofa day today with as little typing as I can get by with. More later.
My family is off to London. Sniff, Sob, Sigh. Ah to enjoy the peace and quiet.

Tuesday, January 12, 2010

An easier round of IViG?

Well, I crashed and burned about 4 days before this current round of treatment. My good energy just petered out leaving me depressed and restless on the recliner. Its amazing how fast the stuff rejuvenates me. After one day, I walked 25 minutes and sleep like a baby.

Today, the second day, I felt a little depleted after the infusion, but I did not go as well hydrated or a full as yesterday. I did take short nap when I got home that did wonders refreshing me. I walked farther today than I have in almost 18 months! 35 minutes and over a mile and didn't even come unglued when I got home. Must be a great batch of IViG.

Tomorrow is the last day thank goodness and let's keep fingers crossed I can maintain my energy and avoid the IViG flu. Since I am getting a higher dose each day, I kind of expected to be much more wiped out than I am. Maybe I will avoid the crash altogether!

Caity and Dennis head out for London on thursday about noon to make a 4 PM flight. My sister in law will stay with me and my mother in law will be around as well as my best friend, Deb. While the cats away.... let's hope we can get the bedroom shades made. Its getting lighter in the mornings and harder to stay asleep.

I have pretty much weaned off the baclofen, finding I really don't benefit from it much at all, but then I didn't take much of a dose at all. Just another brain wipe drug. Sigh. Way over medicated but now feel better with just my morning 2.5 mg Valium and 2.5 mg Elavil at night. 5 HTP helps me sleep and I believe my fibromyalgia is better so the thyroid must be better too!

Am going to change the IViG to 2 day twice a month. All my infusion buddies swear thats the best way to do it to keep energy up and IViG flu down. :) Thanks goodness I am such a light weight I can run it in 2.5 hours. It will be about 2 hours when I change 2 twice a month. Yay!

Now if that danged cardinal will just shut up and quit pecking the window with his beak at daybreak. Sleep is what I need most.

Wednesday, January 6, 2010

Just another day in the hood...

Why is it I only seem to post when I am feeling rotten? Maybe its because I have more get up and go other days and don't sit glued to my recliner feeling sorry for myself and trying to escape the pain.

Anyways, today the weather is changing back to gloomy and cloudy and my joints and muscles sure can predict the changes in advance. We had several great days of sun and high pressure and I got lots done around the house. Took down Christmas, redecorated the living room by moving accessories around and started faux finishing some candle sticks for the front hall that had no personality. I expected to finish them in one day but my numb hands gave out and its now day three with at least one more to go. :) Oh well. Better something than nothing.

A good old friend from my tennis days came over bringing lunch at noon and she proceded to entertain me with hilarious stories of her life. Everything to Marilyn is an adventure and she will spill her stories with very little prodding. I thoroughly enjoyed her company and the homemade tomato soup and chicken salad.

I feel the IViG losing its punch. Hopefully I will have enough energy to finish up all I have planned for the week mostly consisting of winter clean up and reorganization. January is usually the month I clean up the computers doing back ups of data and then opening the boxes and blowing out the debris. I hope I can manage it this year. Lets hope my hands and lower back cooperate with the screwdriver to get into the cases. (Yes, my box is 8 years old and still needs a screw driver to get into it!)

IVig Next week in three days only. I might change it to 2 days twice a month. We will see. One pop of this should make my deductible for the year.

Later in January when my husband and child return from their 6 day trip to London, I plan on seeing a neurosurgeon and then a pain management clinic to see if there is anything they can do to get rid of this constant pain in my neck and lower back. The world would look a lot brighter if I didn't have to suffer all day everyday with pain. Ugh. Medication, as I have found out, is NOT the answer as it just has horrible side effect and wastes my brain.

Have started doing a picture of the day on facebook to try and keep my photography skills up. Creative and technical. On a gloomy day like today it was tough.