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slyJohn 07-15-2003 10:13 PM

cold spots/twitching all over body?
hi everyone. i am a young 20 year old male experiencing strange symptoms for the past year almost. it all started with twitching in my left leg which has spread to basically the majority of the left side of my body. during this time i seemed to have developed an anxiety disorder. i am scared to do anything streneous because my heart starts to race; and i have always been an athlete. as time progressed my upper quads in my left leg have been in pain for quite some time. several weeks later i start feeling cold spots in my leg. it feels like water droplets and as time moved on more these cold droplets have been felt in the other leg and various parts of the body also. i must also mention these symptoms are the worse after sitting down for a period of time. i am very scared. i have had all kinds blood work done, hormone studies done, an EMG on my left leg. it is very depressing because im not an athlete like i used to be and the doctors cannot find anything. i always have a feeling of impending doom. i am very nervous that perhaps i have some kind of blood circulation problem? could that be it? i appreciate all replies. this is a very tough situation that i have been going through at such a young age and i am worrying myself sick about it :(

reneeintx 07-16-2003 09:34 AM

Hi John~

I know EXACTLY how you feel. I started twitching in my left eye december 02 and it progressed to all over my body. I too have the water feeing sensations on my legs.

I have been to a neurologist and had an emg/ncv. Both were normal. Both my gp and neuro tell me it's because of too much adrenaline going through my body. Basically it's our NERVES. We've made our nerves become hyper-excitable. I take lexapro for depression.

There are LOTS of people with our symptoms. You wouldn't beleive it!!!! I've met many over the past 7 months.

Some people take klonopin or neurotin for the twitching. I haven't tried it yet because I'm trying to deal with this without alot of medication. But if worse comes to worse I will give them a try.

I think the water droplet feeling is called parathesia. Both my doc's said this also is nothing to get alarmed about... it's normal, even in people that don't twitch.

I'm so sorry you are only 20 and have to deal with this crazy condition. Oh by the way our condition is known in the medical books as Benign fasciculation syndrome= harmless twitching condition.

Try to relax about this stuff. I too had the impending doom feeling. We both have to be strong and not let our imaginations get the best of us. Ask your doc's about the two medications I've mentioned. You have your whole life a head of you. Don't waste it by dwelling on something that is harmless. This condition can disappear as fast as it came. Relax and let your nervous system heal itself.

Take care,
Renee :)

slyJohn 07-16-2003 10:57 AM

Thank you so much for your reply. You do not know how relieved you have made me feel, or maybe you do hehe. I tend to believe now that I really do have too much adrenaline going through my body. When I was 8 years old, I had a tumor in the adrenal gland (pheochromocytoma). The gland the tumor was on was removed. So I don't know if that has anything to do with what I am feeling like today. I am hoping that over time, the twitching and pain will go away. But sometimes it just seems like it's getting worse :( I tend to not like medication at all. I tried a little bit of lexapro but didn't really help, well maybe I wasn't on it long enough. Anyhow, I will just try and deal with what I have for now and hopefully I will pull through mentally and become the happier person I used to be. I am going to look up some of the terms you just mentioned in your post such as parathesia. Thank you very much for your reply! :) Any other replies are welcome.

x-nitemops 07-19-2003 01:22 AM

It was really intresting reading both of your posts. I have had a simular problem and after many medical tests, my neurogist can only dignose me with "unknown neurological disease". He does not believe that "it" is als (thank God) but does not know what "it" is. Due to me being uninsured I cannot get an emg.
Mine started as a terrible flu that quickly turned into pneumonia in the fall of 2001. Within 45 days of this flu my first neuro symptoms were noticed. These have advanced to where my whole body twitches and cramps terribly. I thought I was falling due to losing my balance but my neuro doc insists it is due to signals from my brain improperly getting to my limbs. My right side is more effected. My rt hand is curled in a fist and now my toes on my rt foot are starting to curl. My doc wants me to under go another lumbar punture to rule our west nile virus infection. My first spinal (in 2001) showed only elevated protiens.
I hope for the best for you and hopefully we can all have answers to our health issues. if there is a real diagnosis I will post it. Good luck and best wishes, Stephen.

slyJohn 07-19-2003 06:58 PM

Thank you for your reply. It must be really frustrating to be diagnosed with something unknown :( I hope your doctors find the right answers that way you can be treated more effectively. Well, I just got done watching a movie. I could barely sit through. I was about to leave early but I fought through it and stayed. My legs, especially around both groins, start to cramp up. My legs start to feel cold but they are still warm. Eventually, it will spread slightly up to my stomach. Then my legs start twitching quite a bit and it starts to spread all over my body. It gets worse and worse and I get scared that if I sit down too long, I am going to have a seizure. Then after a while I start feeling cold water droplets that will spread over my body, mostly my legs. I just don't know what to do. I am only comfortable standing up or laying down. Even then, after sitting down for so long I will still feel symptoms for quite a while. And like I said, I've been going through a lot of anxiety with this. I can't do anything strenuous or I feel like my heart is racing out of control. I don't know what to do. I'm scared I'm dying or something :( I hope whatever it is, it is nothing very bad. My doctors can't find anything, and I am here searching on the internet for answers. I am wondering if it's a blood circulation problem like I mentioned; I am not sure. I don't know what else it could be...

slyJohn 07-19-2003 07:18 PM

I should also mention I have some scoliosis. My back curves a little bit to the left. Perhaps it is possible this may be part of the problem but I do not know, only speculating. But most of the pain and uncomfort does reside to the left side of my body. What tests are done to check herniated discs in the back? or what else can it be? As said, I truly appreciate all comments.

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