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.

Ampyra

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!

Neck (Cervical) Injections

Well, I did it on Monday and other than a painful needle stick in the hand for the conscious sedation, I didn't feel a thing or feel bad afterward. Now that its been the better part of a week since I got stuck, I do think I have a bit more mobility and less pain in my neck.

I have recovered from last weeks IViG pretty well even while fighting off a cold and sinus issues from very heavy week of tree pollen. I have walked twice this week over thirty minutes... actually 32 each time and have gone farther with less pain and fatigue than in weeks past. Usually, I wonder if I will be able to make it back from my walk for the last 1/4 mile or so but have spent these last few days wondering if I should try for another loop around the block. So progress is being made, step by step, stride by stride. The UPS delivery guy, fondly refered to as James Brown, commented that he would never know I had any walking issue by watching me pole and hoof it around the hood. That was a nice compliment!

The flowers are starting to bloom around the hood so I take my old point and shoot nikon on my walks. The nikon is small and light enough to fit in my pocket so it doesn't have to hang around my neck! So now I carry poles, camera, pedometer, and cell phone. I should wear my motorcycle fanny pack to carry all the stuff! Actually, this photo was taken with the little Canon 20D.

Next week is Cervical injections #2 in series and of course IViG. Ugh. That means I will be down for the count on the weekend. Oh well, not much happens here on weekends since my dear daughter is 18 and off with her friends, not needing Mom for much.

Had a Neurologist appt Tuesday and of course she lambasted me for not taking enough Valium. I did tell her I did up it from 2.5 mg a day to 3.75. She just rolled her eyes. LOL. I don't want to be on 80 mg a day like a lot of folks since I fully intend to get better and get off these drugs.

She had called the company that makes the "bird poison" Ampyra, and they are not marketing it yet to the neuros. But as she has at least one other MS person clamoring for it, she will keep on the company to get a rep out as soon as its available. Interesting. Well maybe next month for that.

Hopefully with that drug and the injections in my neck, lower back and butt (piriformis muscle) I will get back to more normal life and be able to walk better and best of all, handle the heat when it comes this summer. Fingers Crossed!

IVIG Blues again...

Spring is coming... The pears are budding up!

I continue to suffer terribly for three days after the infusions, whether its 2 days or 3. This time I sailed through each treatment day and kept up with my walking and exercising. It really hit me Friday morning with fatigue, pain and stiffness. I did manage to wimp my way through Pilates training then collapsed and slept most of the day. I had been walking 30 minutes before the treatment which was so good for me and was building up weight and stamina and some muscle.

Saturday I full expected to perk up in the afternoon, but had to drag myself around the block. It took everything I had to make it in one piece without calling for assistance. How weak is that? i am trying so hard to improve but its two steps forward and one step back. Not exercising will cost me some muscle and kill my appetite. I still need to gain about 10 lbs. At least I have put on 5.

Sunday today. I woke up congested and feeling fluey like I was getting Dennis' cold. I kept trying to shake it off and do things, and failed. I sure hate losing 3 days with IVIG Flu to this treatment each time, 6 full days a month, but what else can I do?

This afternoon the sun came out but the temps never got up to the mid 60's like they said, instead hanging out around the 60 degree mark. With the wind, it feels like about 45! I am skipping the walk today. I just don't see it doing me much good. I did do my weight lifting and as much stretching as I could but non of it was comfortable. Advil didn't touch anything but the headache. At least that part is over.

Tomorrow I go for the first of the cervical injections if I wake up feeling semi human. I hope I am not too sick to go, because this course of treatment might really help the pain in my hands. Then the lumbar for the back, legs and feet. Not going to be a fun month but hopefully it will all be worth it.

Tuesday I see the neurologist again. I hope she has some information on Ampyra.

MS marches on. Not fun. Not at all.

Incredibly Depressed

As the weather continues to be gloomy, cold and rainy, I am feeling so depressed today. My family is out of town this weekend so I am alone at home.

I hurt all over and have an IViG hangover as I call it. Only had 2 days of IViG this time and will repeat in 2 weeks. I figured the side effects would be lighter and easier but it seems not to be true. Or this batch of the treatment was stronger or different. I escaped the bad headache but feel so fatigued and tired and cannot shake it.

So I sit in my recliner and watch TV and cry every so often. I wonder if I will ever feel well again.
What a drag. Maybe the sun will come out this afternoon so I can walk, or rather stumble, around the block.

I am hoping the pain doc can relieve some of the pain in my arms and hands and neck. Then we will go on to the lower back. Without some of this pain I am sure I would be less depressed.

And Ampyra will be available in March so hopefully my Neuro will let me try it and that too will help with fatigue and spasticity. There is hope but today I just don't feel it at all.

So I will wrap up in my blanket and keep warm and watch the olympics when they come on.

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!