Maveric007
Well-known member
hi guys!
maybe some of you will remember me from months back, a ridiculously frequent poster and incrdibly panicked
i had (and still have) body wide twitching, non stop in the feet and calves, tounge twitching, tingling all the time, almost 24/7 in my face. muscle pains, perceived weakness (in the beginning), extreme depression and anxiety. those of you who don't remember me, feel free to check my previous posts, i was a mess.
thought i'd give a quick update, especially to help those of you currently in the throes of panic. i still have every single symptom that i had in the beginning (which coincided with a horrendous virus to the DAY of onset) i have had this condition for 7 1/2 months now. i have been to my gp, 4 neurologists, 1 homeopath. i have had 2 cranial mri's ( 1 month and 4 months in) and 4 emgs (at 3 wks, 3 months, 5 months and 6 1/2 months...btw emgs were done by 3 different compassionate neuros at my insistance... none of them thought i have anything wrong with me... one emg also included the tounge) i have been told outright by all 3 neuros that i do NOT have ms or als. AND i finally believe them.
what has helped me the most? i ask because this is what i wanted to hear in the intitial months of this condition.
1) getting all the medical reassurance i needed from reputable doctors. who cares if people thought it was overkill. i have good insurance and that is what it is there for.
2) getting counselling for the overwhelming stress and anxiety.
3) starting antianxiety medication. this was a BIG one for me. i credit this with a major factor in my emotional recovery. for me, lexapro has been a LIFESAVER. this is saying a lot, as i have been, and still am, a big believer in alternative medicine. but it came to a point with me, after my second clean emg (done at world renown emory clinic) and i was still having panic attacks, that i said something has to give. medication can't be any worse that what i am experiencing now. what do i have to lose!?!?!?! i am very sensitive to meds, so i increased the dosage very slowly which worked wonders.
4) staying off the internet, including this website. don't get me wrong. this site was another LIFESAVER in the beginning. and i owe so much to those who were kind enough to support me. BUT, the problem is that if you spend too much time here, it simply fuels the obsession. you start combing all the past posts hoping for reassurance, only to come across posts with WAAAAAAY tmi. putting ideas and thoughts in your head that you never had before. i had never heard of bulbar onset til i starting browsing this website. guess what i was convinced i had 2 months into this!?! i was spending way too much time here, as i suspect many newbees with this condition do, and it was to my detriment. it is not healthy. THANK GOD for this site! it saved me in the beginning. BUT, what do i suggest? get the reassurance you need, then stay away, lest you get more information than you need, lest this fuel the fire. or at least set limits for yourself. give yourself 10 minutes then log off. or, say, i will check back in in "x" months.
anyway, for what it is worth, this has been my saving grace, and hopefully some of you will find this helpful. big love going out to trijeff, EyeoftheWild, suziq, ginlynn, dave, and many more. i hope you don't take the last suggestion personally. you all are AWESOME and i hope this post finds you all well. phish food, pain with pleasure, theoretical toking going out to you all
be happy and be well!!!
xo
mel
maybe some of you will remember me from months back, a ridiculously frequent poster and incrdibly panicked
i had (and still have) body wide twitching, non stop in the feet and calves, tounge twitching, tingling all the time, almost 24/7 in my face. muscle pains, perceived weakness (in the beginning), extreme depression and anxiety. those of you who don't remember me, feel free to check my previous posts, i was a mess.thought i'd give a quick update, especially to help those of you currently in the throes of panic. i still have every single symptom that i had in the beginning (which coincided with a horrendous virus to the DAY of onset) i have had this condition for 7 1/2 months now. i have been to my gp, 4 neurologists, 1 homeopath. i have had 2 cranial mri's ( 1 month and 4 months in) and 4 emgs (at 3 wks, 3 months, 5 months and 6 1/2 months...btw emgs were done by 3 different compassionate neuros at my insistance... none of them thought i have anything wrong with me... one emg also included the tounge) i have been told outright by all 3 neuros that i do NOT have ms or als. AND i finally believe them.
what has helped me the most? i ask because this is what i wanted to hear in the intitial months of this condition.
1) getting all the medical reassurance i needed from reputable doctors. who cares if people thought it was overkill. i have good insurance and that is what it is there for.
2) getting counselling for the overwhelming stress and anxiety.
3) starting antianxiety medication. this was a BIG one for me. i credit this with a major factor in my emotional recovery. for me, lexapro has been a LIFESAVER. this is saying a lot, as i have been, and still am, a big believer in alternative medicine. but it came to a point with me, after my second clean emg (done at world renown emory clinic) and i was still having panic attacks, that i said something has to give. medication can't be any worse that what i am experiencing now. what do i have to lose!?!?!?! i am very sensitive to meds, so i increased the dosage very slowly which worked wonders.
4) staying off the internet, including this website. don't get me wrong. this site was another LIFESAVER in the beginning. and i owe so much to those who were kind enough to support me. BUT, the problem is that if you spend too much time here, it simply fuels the obsession. you start combing all the past posts hoping for reassurance, only to come across posts with WAAAAAAY tmi. putting ideas and thoughts in your head that you never had before. i had never heard of bulbar onset til i starting browsing this website. guess what i was convinced i had 2 months into this!?! i was spending way too much time here, as i suspect many newbees with this condition do, and it was to my detriment. it is not healthy. THANK GOD for this site! it saved me in the beginning. BUT, what do i suggest? get the reassurance you need, then stay away, lest you get more information than you need, lest this fuel the fire. or at least set limits for yourself. give yourself 10 minutes then log off. or, say, i will check back in in "x" months.
anyway, for what it is worth, this has been my saving grace, and hopefully some of you will find this helpful. big love going out to trijeff, EyeoftheWild, suziq, ginlynn, dave, and many more. i hope you don't take the last suggestion personally. you all are AWESOME and i hope this post finds you all well. phish food, pain with pleasure, theoretical toking going out to you all
be happy and be well!!!xo
mel