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Unread 12-09-2012, 08:10 PM   #1
BARBARA356
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Hi, do any of you have these weird symptoms? I go to school all day, I get a little tired, but nothing compared to the days I am off. I know that sounds weird, but I feel like someone sucked the blood out of me when I am home.
I don't even feel like doing dishes or laundry. I want to but my body is so tired. Also I am learning computers, and my eyes don't want to focus on the paper I am typing.... I have Nystagmus and Strabismus, my guess is that it is from my muscle weakness. Please let me know if my symptoms are unusual.
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Unread 12-09-2012, 09:21 PM   #2
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I had those same symptoms. I had double vision so bad that I wore glasses with prisms for years. Now that I have been diagnosed with MG and put on Mestinon I am troubled with double vision ONLY if I look to the hard left or right. I'm hoping that as my dosage is adjusted this will clear up also. I no longer require prisms at all.

Have you been diagnosed with MG?
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Unread 12-09-2012, 10:30 PM   #3
BARBARA356
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Originally Posted by uncledave View Post
I had those same symptoms. I had double vision so bad that I wore glasses with prisms for years. Now that I have been diagnosed with MG and put on Mestinon I am troubled with double vision ONLY if I look to the hard left or right. I'm hoping that as my dosage is adjusted this will clear up also. I no longer require prisms at all.

Have you been diagnosed with MG?
Yes I have been diagnosed since 2005. Do you have days like I do with fatigue?
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Unread 12-09-2012, 10:41 PM   #4
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I am terribly tired. It depends on how busy I am at work as to whether I am more tired at work or at home. I get more tired at home if I try to do too much. I am tired a lot.
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Unread 12-09-2012, 11:02 PM   #5
uncledave
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Originally Posted by BARBARA356 View Post
Yes I have been diagnosed since 2005. Do you have days like I do with fatigue?
I sure do. Mestinon has helped but has not completely eliminated this.
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Unread 12-10-2012, 04:01 AM   #6
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Quote:
Originally Posted by BARBARA356 View Post
I get a little tired, but nothing compared to the days I am off. I know that sounds weird, but I feel like someone sucked the blood out of me when I am home.
Hi

From my own experience of something similar I put it down to a mix of the following:

1) I would have less adrenalin and more time to notice the symptoms whilst at home.
2) I managed to hold back symptoms at work (to an extent and only in the beginning) and then crash, once out of the public eye.
3) Even long holidays in hibernation mode did not relieve the situation - just eased symptoms and always only temporarily....

Was not on any medications during this time.

Hope you have a good neuro and are following a good treatment plan

Anacrusis

Last edited by Anacrusis; 12-10-2012 at 04:39 AM.
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Unread 12-10-2012, 07:10 AM   #7
BARBARA356
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Quote:
Originally Posted by Anacrusis View Post
Hi

From my own experience of something similar I put it down to a mix of the following:

1) I would have less adrenalin and more time to notice the symptoms whilst at home.
2) I managed to hold back symptoms at work (to an extent and only in the beginning) and then crash, once out of the public eye.
3) Even long holidays in hibernation mode did not relieve the situation - just eased symptoms and always only temporarily....

Was not on any medications during this time.

Hope you have a good neuro and are following a good treatment plan

Anacrusis
I have a Neuro but Don't see him much now, school does not accept sick or doctor excuses. The mestinion I was on, never seemed to help. I am on Methotrexate 3-20 Mgs once a week and Prednisone 7 mgs every other day.
It may be the medicine has side effects also. Thanks for your input.
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Unread 12-10-2012, 07:14 AM   #8
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I had similar experience with being able to get through whatever i had to do (as recently as May i managed to get through a 12 hour mediation session ) but afterwards took me 2 days at home resting. I think to some extent we learn to adapt, push through but then our body forces us to rest, rcover. Bad news from my perspective that despite lots of mestinon, prednisone and one dose of ivig i couldnt do that again.
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Unread 12-10-2012, 09:03 AM   #9
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Barbara,

If you're not doing it already, I highly recommend detailed journalling. I thought I was keeping track of triggers and such, but I was really surprised by what I discovered. I rated my symptoms every day on a scale from one to ten, and also my level of activity, again from one to ten. Then I made a line graph (OK, I'm a nerd, I really like graphs!). I was surprised to find out that my activities were affecting me much more than I'd realized--but that there was a one- or two-day delay. In other words, a busy day on Monday will knock me out on Tuesday or Wednesday. I think for some MGers, it's even Thursday.

Abby
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Unread 12-10-2012, 07:14 PM   #10
BARBARA356
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Quote:
Originally Posted by Stellatum View Post
Barbara,

If you're not doing it already, I highly recommend detailed journalling. I thought I was keeping track of triggers and such, but I was really surprised by what I discovered. I rated my symptoms every day on a scale from one to ten, and also my level of activity, again from one to ten. Then I made a line graph (OK, I'm a nerd, I really like graphs!). I was surprised to find out that my activities were affecting me much more than I'd realized--but that there was a one- or two-day delay. In other words, a busy day on Monday will knock me out on Tuesday or Wednesday. I think for some MGers, it's even Thursday.

Abby
Thanks at least I don't feel like I am crazy. I also have a delayed fatigue. I can go shopping one day and the next be worn out.
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