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Author Topic: ALS, MS, parkinson??? Please help!  (Read 1222 times)

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Offline babytv

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ALS, MS, parkinson??? Please help!
« on: October 25, 2013, 07:24:32 AM »
Hi everyone

I m new here, and also terrified from AlS or MS. I feel bubble leg feeling, twitches, vibration feelings, hot feet 24/7. I also have bladder pain (diagnosed with urethral syndrome). I ve been suffering from a LOT of health anxiety, I have done MRI (normal), diabetes and tyroid blood work (normal). But now I keep thinking I may have ALS, althoug I read that bladder problems are not on the ALS profile. I can deal with my bladder (Im doing better right now), but I m really really terrified about ALS. I do not feel weekness, but I can not let myself thinking that it will come... I m also a female, with 34 years, not a midle age man. So I think statistics plays good for me. But still.... I cannot sleep at night. I just want these feelings of twitching and others to go away. They are mostly on my left leg, but sometimes I also feel them on the other leg, or arms...

Could this be ALL anxiety???

Please help!!!
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Offline skim50

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Re: ALS, MS, parkinson??? Please help!
« Reply #1 on: October 25, 2013, 12:51:32 PM »
If you had ALS you would not even be able to pick up a t shirt. ALS does not come on slowly.. You can just think about it, and then you have it. Its a very quick moving, progressive disease. I have twitches in my legs too, try taking a magnesium supplement. It relaxes your muscles. I also have vibrating and numbness in my feet sometimes.. The symptoms appear to be quite common for anxiety. Best of luck.
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Offline Dmcrae22

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Re: ALS, MS, parkinson??? Please help!
« Reply #2 on: October 25, 2013, 01:38:27 PM »
You'll find that the fear of ALS is fairly common among those with health anxiety. Anxiety does a number on the nervous system which unfortunately causes a large range of physical symptoms. When you add a google search or two to the equation, it creates a panic and fear that only furthers those symptoms. The fear of ALS ruled my life for a couple months about 6 months ago. It started out with a single muscle twitch and I made the mistake of googling it and discovering ALS. Within a few days the twitches were everywhere, muscle vibrations were especially bad in my back, no appetite, hot and cold flashes all over and a lot of insomnia. I'm a 32 old male and even though the odds of getting the disease at all are extremely low (<1%) and even exponentially lower due to my age, those stats did little to help. I always thought I was the exception. I was doing a lot of what you are doing and just waiting for the weakness to start. Everyday I was testing my strength at least every other hour. I spent so much time reading ALS message boards and thinking about how my family was going to cope with all this and that only created more anxiety. I would spend hours on the internet looking for reassurance but would just always end up ignoring the positive information and just dwelling in the negative. My doctor now calls it catastrophizing. It was a very scary place to be and I'm really sorry you're experiencing that now.

But take some comfort though that you're not alone. It's really hard for people who don't have anxiety or health anxiety to understand how real and debilitating the fear is. Luckily you've found a place where people do understand and many have gone through exactly what you're experiencing. My first recommendation would be to come to this site if you have to be on the internet. Use the search function and look up ALS and you'll find a lot of people with similar fears. Another thing that helped me was finding projects and setting goals. You get so wrapped up in focusing on your body and self that your mind just dwells there. Set some small goals at first and accomplishing those helped me a ton. I remember weeding a flower bed felt really great as I was able to see that I wasn't sick and I wasn't just sitting there looking for twitches or weakness. Lastly, don't be afraid to talk to your doctor about your anxiety and open to talking to a therapist or taking anti-anxiety meds. I'm not a big medicine person, but they really did help me and just think of them as a tool in your arsenal in overcoming anxiety. Ultimately it's going to be you that makes it happen. Hope this helps.
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Offline Overthinking extrovert

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Re: ALS, MS, parkinson??? Please help!
« Reply #3 on: December 19, 2013, 07:27:32 PM »
I have watched my father die of ALS so I can tell you that you will know when you have it. I have read somewhere that it progresses fast. Relatively fast. I have read that ALS patients live on average 5 years from diagnosis. My dad died within 2 years so there's the speed of progression for you. It's not that fast even when it's fast. Also, it starts in your hands or your feet or your tongue. Never biceps, never pectoralis maior, never quadriceps. It is said that you notice it when you trip on a flat surface a lot (not twice a day but all the time) or when you can't button up a shirt (not missing the buttons but not being able to grab them with fingers) or when you have slurred speech (not misspelling words). And then you trip on a flat surface or on a very low curb. Then you are buttoning up your shirt and you miss the button. But that's being clumsy. When you get ALS, you become weak. And that's not lifting something with difficulty, that's not being able to lift it at all! That's not tripping over a curb, that's falling on your nose on a flat surface. And it doesn't feel like anything, you just lose the ability to move a muscle. But you feel if someone touches it. Also, the twitching starts after weakness because it is caused by motor neurons trying to fire but they don't. And from what I've heard, this twitching is not that intense vibrating of the muscle (like the one in the eyelid) but more like crawling under your skin. So when you feel the creepy crawlers on a part of your muslce and you feel no weakness, you're fine.

So let me tell you. If you can turn a doorknob, you're fine. If you can stand up and walk, you're fine. If you can talk to people, you're fine. Not satisfied? Try moving your fingers like you are typing on a keyboard (better not type for real, you might miss some letters and get scared again :P). People with ALS can't do that.  Try standing on your toes. People with ALS can't do that. Try standing on your toes on one leg! (lean on something because for some people it is hard to stand on one leg, let alone on the toes of one leg) Read something aloud. People with ALS find it very hard to speak. BUT! Anxiety can make you fail all these tests. If that happens, and you have to be severely anxious if you fail these simple tests, try getting mildly drunk. 3-4 beers, few glasses of wine, few shots of tequila... And then take these tests again. You have to cheat the consciouss part of your brain.

If you get a MRI, and nothing turns up, relax, you don't have it. They can see it clearly because the affected muscles don't have an electrical charge anymore.

Another thing about the brain. Google "mind over matter". It means that the mind is capable of creating physical changes in your body. For example, muscle twitches that appeared after reading about ALS symptoms misteriously dissapear after you read that twitches appear only after the weakness sets in. And then you become weak because ALS does not start with twitches. DUH! Have you ever felt cold on a winter day and then you meet a friend and you both agree that it's cold? And then you start talking about some other random BS and you suddenly realise that you don't feel cold again because you forgot you were cold? That's mind over matter for you. This is but a simple example because mastering your mind is no easy task, especially when you suffer from anxiety... Another example, I have been showering every day with cold water. And I mean really cold water, even in winter. First I wash myself with hot water and then I turn the hot water off (this hydrotheraphy works like that but also because it's harder to rinse out the shampoo out of your hair with cold water :D). When I had started, I shivered in the cold water and was shocked every time I turned off the hot water. But now, after a few years, it's the best part of a shower. That's because my mind knows I am not doing anything bad to myself so fight or flight doesn't turn on. Everyone shoud try it (except if you have a heart condition becuse cold water causes vasoconstriction), it relaxes the muscles but also the mind. And afterwards you feel really great. Haven't showered with only hot water for years without exceptions. It's that great. You just have to come to terms with it. :D

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It is by my will alone I set my mind in motion

Offline jujumyers

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Re: ALS, MS, parkinson??? Please help!
« Reply #4 on: February 03, 2014, 10:46:20 PM »
@babytv: yes this can all be anxiety! I have always been high-stress and anxious, but at one point I had anxiety so bad, for an extended period of time (6 months+) that the neurologist who saw me ruled out the heavy hitters, but did tell me that my body was at a point where it was actively beginning to shut down in order to preserve itself. Mind you I had no appetite and was eating between 200-600 calories a day for that time period, minus the empty calories in soda. My nervous system was a wreck. Stress is very real and is accompanied by numerous, scary symptoms.

@overthinking extrovert: cold shower thing = awesomeness! No more hot showers for me, the cold is incredibly refreshing.
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Offline Hypo84

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Re: ALS, MS, parkinson??? Please help!
« Reply #5 on: February 04, 2014, 05:55:57 AM »
Overthinking extrovert explained very well you don't have ALS. That post should now be copied to every ALS scare topic.
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Offline MadyMa

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Re: ALS, MS, parkinson??? Please help!
« Reply #6 on: February 04, 2014, 04:51:34 PM »
To Overthinking Extrovert;  this was an extremely helpful post to me since I worry about having ALS.  Thank you for taking the time to post your comment and know that you have helped me greatly.  Also, I am very sorry to hear about your father having had ALS. 
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Offline Reallyworried93

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Re: ALS, MS, parkinson??? Please help!
« Reply #7 on: March 03, 2014, 06:22:58 PM »
The hardest part is even when you read the most detailed explanations you won't believe it as you then start convincing yourself your symptoms are such as described! It's insane how much anxiety can affect your life.
I'm currently on the als fear after reading a forum and googling "tongue twitching", I have now convinced myself of bulbar onset als besides knowing that als is rare, bulbar onset even rarer, juvenile als even rarer than that! (I'm 20)
Als is so rare, and from what I've read the symptoms are quite obvious and progress quite quickly so I'm sure it would be obvious not just to you but to others if something was up! Good luck xx
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Offline jessica0113

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Re: ALS, MS, parkinson??? Please help!
« Reply #8 on: March 04, 2014, 12:02:29 AM »
My hubby is in the midst of an ALS scare now- he's 100% convinced it's bulbar.  He doesn't have it, and neither do you.
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