Saturday, June 14, 2008

Determining Mestinon 60 mg and 180 mg Timespan dosages for me

My Man on the mend!

Sometimes mistakes, forgetfulness, and other human factors can bring unexpected positive awareness. Such is the case of my Mestinon dosage.

One of the interesting things about Mestinon is that while it brings wonderful results in so many ways - oh, how well I remember when I started using it how exciting it was to write, see better, smile, and other things! - just going over your correct dosage, brings on the exact symptoms as MG itself.

I have been concerned about the seemingly worsening of my MG in the past few months in spite of the IVIG treatments. Yes, there is improvement with each one, but, I don't know, Jim and I have talked about little there seems to be. However, that is one thing I knew from the beginning. TIME. It is a slow process under the best of situations, and here I am trying to do this with so many things going against the tide, yet expecting what I hear of so many others accomplishing in a certain amount of time, knowing all along that we are as snowflakes, each one that different, and I should never be expecting any more than that individualism.

This brings me to yesterday, Friday, April 13. I had one of those medication forgetfulness days, except for the help Debbie gave me. Amazingly my eyesight almost could not have been better. Do not misunderstand or get me wrong, it was still impaired, but nothing like it usually is with the diplopia and virtually no tearing at all, with no crusting of the lids and lashes. For comparison, I took a 60 mg last night. Instantly there was tearing, double and blurry vision exactly where there had been clearness almost all day before.

What do I think about this? I am wondering if my MG has been improving some, but it has been overshadowed by the other things going on, like the diabetic neuropathy, and the other things. Not realizing the MG might be responding to the IVIGs, with the Mestinon still at the higher level, putting me over *my* top, it was putting me in *overdose* level, thus still keeping me MG active. Visually, and some mobility in my bed were actually better than they had been in a long time. That one 60 mg was taken late last night, gave me visual disturbances afterwards, but now I am experiencing much improvement. Reading my monitor is not progressing toward near the vision loss that usually occurs. It is now 9:31 a.m., I have not had anything at all, and my vision is better than it normally is. If I take any at all, I am dropping it to no more than 30 mg. Dr. Saeed said I would be the one to judge how things are working, and this is my judgment. The IVIG has been working but being missed by other things in the boat, the side effects of the IVIG itself, but the Mestinon has not been lowered accordingly allowing for those improvements to be seen either. I am going to be checking some of the mobility today.

I have not done any walking, but *I* believe while I was up last night that I could tell a *bitsy* more sturdiness. Imagination? We'll see. Plus, I played with, and then helped Ashley with Ashton on my bed last night. He had had a rough day, was fighting sleep in unfamiliar surroundings. I was privileged to give him a bottle, and feel those sweet little hands explore my face - especially my nose :-). Aren't those just the sweetest little things in all of the world, all the while those big blue eyes staring into mine.

Interestingly, I only had to take something for pain just once yesterday, and that was later in the evening when there was a lot going on, and I was up and down doing stuff for myself, changing clothes and more, and it brought on the headaches. Not a bad change from four down to one. Hey! It was only one day, but in my book, that is called a beginning.

So, here we go today. Unless MG symptoms should worsen, I am going without it. No foolishness. In fact, I am breathing better than I have in quite some time. I think I feel up to getting up in my chair, and doing some unpacking, and organizing of the things I need on a regular basis. I hope it works out like I think it will. That excites me because of it allowing me a tad of independence, and not having to depend on Debbie so much when she is so tired.

Let's see. Have I forgotten anything. They've been out, and I hear George barking so they must be returning, and that will sap my memory for sure now! Ha Ha! I do need to go down to the house to get my clothes Jim said he left hanging. It must be my pajama tops because when I went to change last night I could find bottoms and not tops, and he most always puts tops on hangers, and he sent her and me a text that he had forgotten to bring those hang-up things. Shame on him, can you imagine . . . leaving to have cancer surgery and *he* forgot something.

Notice how *orange* is creeping into things here lately? Maybe we need to check up on that.

Granddaddy and Ashton
Aren't they a pair!
Toodles you noodles!
Striving for a world without Myasthenia Gravis

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