Sunday, February 28, 2010

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.

Sunday, February 14, 2010

IViG Flu - Valentine's Day

I am a lot better today and think the IViG side effects are about over. Phew! Yesterday was so depressing and horrible. Today I woke up with a headache but an advil and a 25 minute walk took care of that!

It seems like the bad stuff lasts for 3 days regardless of how many days I do the infusions. Well maybe it is worse with the 3 and 4 day a month at a time stuff. I will have to be a bit more diligent in recording the side effects as I go along. I have next week then have the 2 day treatment again on the 24th and 25th. We will see how that goes before I make a decision on which plan I like better.

The sun came out today, Valentine's Day, which makes me feel better no matter whats going on. It is also about 70 degrees today as well so I could walk in sandals and short sleeve shirt instead of bundling up in a parka, gloves and a hat! Yay!

Saturday, February 13, 2010

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.

Monday, February 8, 2010

Neuro Appt and more....

February 1 I had another appt with the PA at the Neuro's office. All my tests were fine and I got a new prescription for wellbutrin to see if that helps my pain, energy and mood.

I just love the PA's as they take so much time testing and talking and such.

I tried the wellbutrin for 2 days and didn't like the way it made me feel. I will try it again in a few weeks. I want to be as stable as possible for my appt tomorrow with the pain doc.

Stopped the Elavil at night in anticipation of starting the Wellbutrin. I didn't realize how much the Elavil helped till I stopped it. Slowly the pain and more stiffness crept back in and I felt more discouraged than normal. Of course that could be the IViG wearing off... So I started back on the Elavil at 5 mg at bedtime. I also restarted the LDN and I have been sleeping really well for past few nights. Had some rough dreams due to the LDN but they will taper off in a week or so.

I did 2 mg for a week then upped to 3 mg and have not noticed anymore stiffness than normal. I am just rigid as can be regardless how long or craftily I stretch.

Did acupuncture Saturday afternoon and its helped a lot. My shoulders, trapezius muscles, are locked up tight. Thats where I carry my stress. I hope the pain doc can recognize this and do something about it. That and my danged sacroiliac joint area. Oh what I would do for a pain free day. I know what I would do... Just overdo it and be back where I started.

Lifted weights several times over the last week and it helps a lot. My danged hands are getting weaker and weaker though and that bugs me.