terrif1ed
Member
- Joined
- Apr 13, 2011
- Messages
- 29
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- NY
Hey all hope everyone's feeling better than myself...
So my initial complaints I posted seem to have been progressively worsening... I'm a realist and at this point am pretty much coming to terms with the fact that it is very possible I could be suffering from ALS.. I've been in denial about the tiny fasics, chalking it up to pulses in odd places (lol yeah right) because the twitches are very rhythmic and constant. But it seems the deeper I look, the more I find, and the more I become consumed with depression and hopelessness. I stood on my tippy toes and checked my calves out in the mirror for the first time and my right muscle is definitely less defined and bulky than my left, My husband actually saw the difference before I did (and I am right side dominant by the way so if anything this would be less scary if the atrophy was in my left calve but no). I've been dealing with SEVERE daily fatigue, I feel like I need 2 huge cans of redbull just to get me through the day - actually that was my initial complaint to my GP 2 months ago... I'm just so tired and run down. The fatigue has been bad for months possibly even years but seems to be worsening (I can sleep for 10 hours straight, AND still not wake up refreshed... I sleep so deeply and for so long and it does not correlate to strenuous activity). I know at 24 I just should not be feeling so depleted. Is fatigue a common finding in ALS? I've had millions of cognitive symptoms for many months, some years, which I never could attribute to anything specifically. Which include:
Daily Chronic Fatigue
Brain Fog Daily
A.D.D like forgetfulness
No short term memory
Confusion/Head always feels overwhelmed, scrambled
Inability to multitask (ex. cannot listen and interpret what’s being said to me if I’m doing something else.. I always zone out)
I’m becoming Dyslexic
Dull headaches in forehead (especially with changes in weather)
Mood Swings/ Easily angered
Hair Loss, Progressive Thinning
Stiffness
Creaky/Popping Joints Everywhere
Heart Palpitations
Severe Cold sensitivity & Hands, Feet always freezing to the touch.
My newer symptoms are now the twitching, weakness, atrophy, stiffness and sensory sensations in my hand.
I've also been dealing with stiffness in my legs, neck, shoulders, hands... basically all my limbs just feel *tight* and so inflexible.. I can barely straighten my legs completely (barely) without the stiffness and burning behind my knees... All my joints crack & pop when I bend or try to stretch.. I feel like an old lady. More recently my right hand has been constantly burning, in wave like sensations, not my pulse but it's a very odd feeling and almost feels electric. I can see the pulsing in both my palms but don't feel it. Because of my vague Lymes diagnosis (Positive ELISA + one band on western blot, but still awaiting Igenex results) I know of course this is a factor - and I'm willing to pursue treatment in hopes that Lyme's is the culprit all this. But between the atrophy and twitching I just feel so hopeless. I cannot believe how many PALS have tested positive for Lymes, It's crazy, I know this subject has been beaten to death but I mean...There's obviously a connection right? Why do some people treated for Lymes who have been diagnoseded with ALS get better - and why do some get worse? It's just so baffling. Can anyone post their experiences with Lymes/ALS? I did a search and read many posts...most of which broke my heart to read.. People sounding just like me with high hopes of treating the Lymes and getting better only to inevitably fail. My husband hasn't been supportive really at all, even though deep down I see he's scared too but won't show me. I haven't confided in my family because I don't know how to tell them... I know they'll just be in denial anyway. Ironically my anxiety is non existent, I've pretty much passed that point and now just feel emotionally numb. I'm miserable and having thoughts I shouldn't be having...Thinking of ways OUT.. It's terrible.
I want to be positive and I'm trying so hard to be strong but It's hard for me to laugh, smile, or think about anything other than this... I really admire the strength of PALS going through this, and I want to learn to be positive and make the most of life as well (as anyone should do anyway) but I'm having such a hard time coping with my new reality. I haven't had an EMG yet but I know what the results will be...I see the constant twitching, I see the atrophy and I feel the weakening - I don't need a test to confirm this reality, but I do need hope, and strength to cope. I want to be strong but I don't know how... I think about that quote that god doesn't burden you with anything you can't handle and overcome...and then I think wow, he really doesn't know me at all because I'm not that strong.
So my initial complaints I posted seem to have been progressively worsening... I'm a realist and at this point am pretty much coming to terms with the fact that it is very possible I could be suffering from ALS.. I've been in denial about the tiny fasics, chalking it up to pulses in odd places (lol yeah right) because the twitches are very rhythmic and constant. But it seems the deeper I look, the more I find, and the more I become consumed with depression and hopelessness. I stood on my tippy toes and checked my calves out in the mirror for the first time and my right muscle is definitely less defined and bulky than my left, My husband actually saw the difference before I did (and I am right side dominant by the way so if anything this would be less scary if the atrophy was in my left calve but no). I've been dealing with SEVERE daily fatigue, I feel like I need 2 huge cans of redbull just to get me through the day - actually that was my initial complaint to my GP 2 months ago... I'm just so tired and run down. The fatigue has been bad for months possibly even years but seems to be worsening (I can sleep for 10 hours straight, AND still not wake up refreshed... I sleep so deeply and for so long and it does not correlate to strenuous activity). I know at 24 I just should not be feeling so depleted. Is fatigue a common finding in ALS? I've had millions of cognitive symptoms for many months, some years, which I never could attribute to anything specifically. Which include:
Daily Chronic Fatigue
Brain Fog Daily
A.D.D like forgetfulness
No short term memory
Confusion/Head always feels overwhelmed, scrambled
Inability to multitask (ex. cannot listen and interpret what’s being said to me if I’m doing something else.. I always zone out)
I’m becoming Dyslexic
Dull headaches in forehead (especially with changes in weather)
Mood Swings/ Easily angered
Hair Loss, Progressive Thinning
Stiffness
Creaky/Popping Joints Everywhere
Heart Palpitations
Severe Cold sensitivity & Hands, Feet always freezing to the touch.
My newer symptoms are now the twitching, weakness, atrophy, stiffness and sensory sensations in my hand.
I've also been dealing with stiffness in my legs, neck, shoulders, hands... basically all my limbs just feel *tight* and so inflexible.. I can barely straighten my legs completely (barely) without the stiffness and burning behind my knees... All my joints crack & pop when I bend or try to stretch.. I feel like an old lady. More recently my right hand has been constantly burning, in wave like sensations, not my pulse but it's a very odd feeling and almost feels electric. I can see the pulsing in both my palms but don't feel it. Because of my vague Lymes diagnosis (Positive ELISA + one band on western blot, but still awaiting Igenex results) I know of course this is a factor - and I'm willing to pursue treatment in hopes that Lyme's is the culprit all this. But between the atrophy and twitching I just feel so hopeless. I cannot believe how many PALS have tested positive for Lymes, It's crazy, I know this subject has been beaten to death but I mean...There's obviously a connection right? Why do some people treated for Lymes who have been diagnoseded with ALS get better - and why do some get worse? It's just so baffling. Can anyone post their experiences with Lymes/ALS? I did a search and read many posts...most of which broke my heart to read.. People sounding just like me with high hopes of treating the Lymes and getting better only to inevitably fail. My husband hasn't been supportive really at all, even though deep down I see he's scared too but won't show me. I haven't confided in my family because I don't know how to tell them... I know they'll just be in denial anyway. Ironically my anxiety is non existent, I've pretty much passed that point and now just feel emotionally numb. I'm miserable and having thoughts I shouldn't be having...Thinking of ways OUT.. It's terrible.
I want to be positive and I'm trying so hard to be strong but It's hard for me to laugh, smile, or think about anything other than this... I really admire the strength of PALS going through this, and I want to learn to be positive and make the most of life as well (as anyone should do anyway) but I'm having such a hard time coping with my new reality. I haven't had an EMG yet but I know what the results will be...I see the constant twitching, I see the atrophy and I feel the weakening - I don't need a test to confirm this reality, but I do need hope, and strength to cope. I want to be strong but I don't know how... I think about that quote that god doesn't burden you with anything you can't handle and overcome...and then I think wow, he really doesn't know me at all because I'm not that strong.