Body Betrayed | Body Disabled

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Wednesday, March 2, 2011

IVIG Update March 2, 2011

It has been over a week since I completed the second series of IVIG treatments. The first round was in late December 2010 and the second round was in mid-February 2011. I should be near the maximum effect of the IVIG treatments at this point. So how am I feeling?

My headache seems to have finally stopped last night. I very seldom have headaches, so its fairly clear the headache was a reaction to the IVIG. This has been the only side-effect I have felt.

Both IVIG and PLEX help my ability to walk--for a few weeks. Right now I am not limping as badly and I feel a little more stable on my feet. This is the biggest area of improvement I see from my treatments, but in the past any improvements have been short lived. I hope that my improved walking will last more than a couple of weeks. Although I am walking a little better I still am very limited in the distance I can walk.

My breathing is not any better. Almost any activity leaves me breathless. At times I still feel like there is a huge weight pressing down on my chest. I am concerned about my breathing issues.

My vision is not any better either. My Small Fiber neuropathy is about the same. I am still losing hair on my legs and stomach. The hair on my head is still turning darker (but I am not complaining).

I have noted in previous blogs and videos about using situps as a measure of my medications effectiveness against MG. As of this week there is no difference in my situps from previous videos. I cannot do a situp without Mestinon. I can do one situp thirty minutes after taking Mestinon. At two and one-half hours, I cannot do a single situp.

Let me share an example of what happens when I attempt an activity. Last evening we ate supper at my daughter's. After supper she wanted me to replace her shower head. I have changed-out dozens of shower heads over the years. Its a three-minute job. Loosen and unscrew the head, replace with the new head and screw in place, then tighten. No problem--I'll change it out in no time. About fifteen minutes later I finished the job.

Why so long? Holding my arms up above my head and using them for any amount of time makes them almost useless. They tire, ache, tremble, shake. So I adapt my strategy and work a few seconds and rest, work a few more seconds and rest. Oh yes, I try to catch my breath while resting. I am still stubborn and refuse to be defeated by a shower head. I won the battle, but suffered in the process.

This is what life is like with Myasthenia Gravis.

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