Thread: Symptom Update
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Old 01-30-2014, 07:27 AM
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Panorama Panorama is offline
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Join Date: Jan 2014
Location: Silicon Valley
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Panorama Panorama is offline
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Join Date: Jan 2014
Location: Silicon Valley
Posts: 263
10 yr Member
Default Symptom Update

I will be seeing my neurologist on Monday morning. I've been on a high dose of Prednisone for three weeks, and have been tolerating it fairly well. My current level is 60 mg per day, or 1.8mg/kg/day. My normal primary symptoms centered on my face, mouth, tong, and jaw muscles. Speech was very labored or nonexistent by end of the day. Symptoms were much less sever after sleeping. My jaw would drop and I would finding myself aiding it with my hand. I would also assist chewing with my hand. Eating was possible, but it took time, as did drinking. After eating I would have mucus collection in the back of my throat, as I did late into the night around the time I would go to bed.

My neurologist will soon begin to taper the Prednisone down to maintenance levels. After the Prednisone regimen over the last 3 weeks things have markedly improved.
  • I can eat and drink more freely, increasingly better each day. Last night I could eat with gusto. It's been months since I could eat without difficulty.
  • I no longer have the mucus issue at night, or following meals.
  • Before, a belch or burp was shallow and not satisfying, now they are deeper and more satisfying.
  • My jaw muscles is much stronger. I no longer feel compelled to help keep my jaw closed with my hand or aid me when chewing.
  • I have more strength in my tong.
  • Better yet, my speech has markedly improved. I can speak louder and longer, but still become fatigued if I overdue it. The difference now is that I only have to rest a few minutes for my stronger speech to be restored.
  • I can do a 30 count on one breath.

No vision issues. My distance and night vision is excellent. No more double vision since the September severe MG event. After that event, I found that I needed my reading glasses more. I needed them to read the computer screen in the taxicab. I thought this was normal with age. I am using 1.5 strength. After the Prednisone I no longer need the reading glasses to read the taxicab display.

But I do have additional symptoms that I did not have before. I know this may be due to the Prednisone, Mestinon, the every changing nature of MG symptoms, or a combination of all three.
  • My lower leg muscles are weaker, but not that bad. I need a little extra effort to get up into my van, or down into my cab. It takes a bit more effort to climb even a few stairs.
  • It is much more difficult to lift things above my waist. Before I could swing my 20-pound camera bag by the shoulder strap from the floor onto my shoulder. I cannot do this now. I can lift it normally from the floor to my waist using the hand grips. I need two hands, or place it on a table and climb into it before accepting the weight. Once loaded on my shoulder, there is no problem totting it.
  • The neck muscles in the back of my neck are weak. It takes effort to keep my chin off my chest. I find myself assisting my neck by placing my hand under my chin to keep my head upright. This is more pronounced when walking, sitting straight up at my desk or in my van, but noticeably less to nonexistent when sitting the the cab. The cab seat leans back a bit. If I lean back in my desk chair, it is much easier to keep my head upright.

Any observations will be appreciated.

-Mark-
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