Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hi all, daughter soon to be 22, mito disorder, complex chain 2&3. Something different is going on with her lately. She is very tired all the time anymore, what she use to be able to tolerate 6 mths ago,she no longer can. Has been having episodes where she says its as if she's looking through a dark tunnel and there is a shadow over her eyes, says it feels as if her head is shaking, however her head isn't visibly shaking. Her legs move back and forth during this time. She also become extremely scared and just holds on to me for dear life. She does have a seizure disorder but these recent episodes are different. Explained over phone to Cohen what was going on and he said it sounded like she is having strokes??// She had a MRI last Friday of course no results yet. Cohen said it is the progression of the disease. Anyone out there experience anything like this please respond. Thank you so much Becky Sasser Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 the dark tunnel/shadow over the eyes thing sounds like low blood pressure to me... has she ever fainted? does she get pale when it happens? (although low bp wouldnt cause the other symptoms you described) I just know when my blood pressure drops, everything gets dark from the outside in, so it looks like a dark tunnel... another think i notice (and most people with low blood pressure drops notice this as well) is everything sounds very far away, or 'tinny' when it happens... does this happen to her? I hope you get some answers (good ones) with the MRI! it sounds like a scary experience! Keely > Hi all, daughter soon to be 22, mito disorder, complex chain 2&3. > Something different is going on with her lately. She is very tired > all the time anymore, what she use to be able to tolerate 6 mths > ago,she no longer can. Has been having episodes where she says its as > if she's looking through a dark tunnel and there is a shadow over her > eyes, says it feels as if her head is shaking, however her head isn't > visibly shaking. Her legs move back and forth during this time. She > also become extremely scared and just holds on to me for dear life. > She does have a seizure disorder but these recent episodes are > different. Explained over phone to Cohen what was going on and he > said it sounded like she is having strokes??// She had a MRI last > Friday of course no results yet. Cohen said it is the progression of > the disease. Anyone out there experience anything like this please > respond. Thank you so much Becky Sasser Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 thanks keelly still waiting for mri results Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 hi Ann, thanks so much for your reply. My daughter becomes extremly frieghten when she has one of these episodes- do you experience this? What has your doc. said is going on?These episodes just started about 2 mths ago for amanda. She has never been able to do much- but she has slowed down even more. What she could do 6 mths ago she no longer can. We went to my nephew's wedding over weekend and we had to leave the reception after about an hour- 6 mths ago she would of been able to go to wedding and stay for reception. So hard watching her lose what she fights so hard for. THANks Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Becky, Has your daughter ever have her thyroid tested? Lucas had a spiral downward and both his TSH and Free T4 were extremely low. Lucas has secondary hypothyroidism due to pituitary malfunction. He is only 8 years of age and just recently he was retested where a possible growth spurt may have made the amount of his synthroid not sufficient enough. Just a thought. Loriann Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.