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anxietygal

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Hey im new to these boards and my story is very similar. I was pretty happy with what i read until I read an article from 2 neuros on some government web site that they had a patient that twitched for one year before developing any symptoms that ended up being ALS then they had another that twitched for 4 years before they got it. The document also stated that sudden onset of twitches OR weakness was a sign of ALS. I can provide a link for those who want it its from 2004 has anyone seen this thing?. Now im paranoid. I started twitching about 2-3 weeks ago, started primarily in the left leg(foot) and then went to every part below the waist. My GP Dr gave me a script to the neuro but he told me before I left that its a waste of money since you don't have ALS. Since this started i have had weird things happen that seem to be opposite to what bfs should be. For example when I wake up the twitching is soso then when i get to work it gets pretty bad(and mostly in the feet) at about 6pm it stops( i mean i twitch still but its hard to tell its even happening(and it moves from the foot to the calve and thigh) and when i go to sleep it is almost completely gone). Plus some times i noticed if I change the way i sit the twitching changes). Im extremely prone to anxiety and on a one to ten scale was rated a 8.5-9.5. My anxiety has been able to get my blood pressure to 230/140 from normal and a heart rate of 213 thats 3.55 beats per second!(that a rate is suited for an engine!)Although i rarely get twitches in my upper body(maybe 4 times in a day) on both the left and right shoulder i have developed a pain(it could be from all the "tests" I do to check for weakness) this pain is also strange as it seems to come and go but its always in the same spot. Not sure if its a cramp I used to have those a lot and they did not feel like this. I sometimes get twitches in my ear! Any words of wisdom?
 
First off don't bring *beep* like that to the board. People don't need to hear that. If you don't have meds for your anxiety get some. Sounds like run of the mill anxiety to me. Did you know that GAD itself can cause this kind of twitching? Even if you did have ALS which I seriously doubt you do. You going to waste your life thinking about it? Your fine, act fine and live your life like you have a 12 inch *beep*.
 
Now I feel bad. I also found that that same DR had 2 ppl with no issues get it...Sigh...How the hell can you publish a study that makes a stupid link like the first one when health ppl are getting it at the same rate!?Everytime you go through these archives you find this weird stuff. Im willing to bet I could link something nasty to having a broken arm. I just dont understand how this information can be left out there unchallanged by others.
 
Hi,those cases documented from top als specialists you describe (well, even then some people here try to ignore it and deny it) - I probably know what you are reffering to, but if I remember correctly, the one who developed ALS after 4 years of twitching had its faimilal form, so did the previous one.Im not sure if it was dr.Carvalho, Eisen or Krieger or another, but I was discussing with the first two via email about their casuistics, both were convienced this is very rare and more often linked to familial form, where LMN hyperexcitability precede its degeneration.I have more detailed emails from them, but the result is the same:1) Very rare2) Mostly with patients with recent onset of fasciculations above 45+ years3) More with familial formSo how is your chance? Nobody here ever developed ALS, that speaks much.
 
Ok. I don't know much about those studies, but from what I've read here, the twitches that had developed into something serious were twitches in localized areas, not widespread. Is this correct??? If so, then we should still have nothing to worry about since all of us complain about widespread twitches with hot spots in certain areas.Dawn
 
Oh Goodness...you guys be nice and dont jump the guy/girl on their 1st post. If you remember correctly YOU too freaked out when you read the ALS/MD/ect ect ect articles so just stop it.anxietyfreak, you sound like all of us when we 1st posted here...and you also sound like some who STILL post here after months/years of hearing they are okay. First, your doctor told you that you do not have ALS...and went on to tell you that he thought it was a waste of money to go to a neurologist. I personally think you should go see the neurolist because the reassurance they will give you, will more than be worth the money...I speak this from expierence. Second, stop reading ALS articles, also, do not go reading MD or any other articles of the sort. They will do nothing but increase the anxiety, which you have already admitted you have a problem with. Third, do whatever you have to do to get the anxiety under control...use the search on this forum for all of your questions...it keeps you away from the scary stuff. Once you get the anxiety under control, you will feel much better. Also, stop testing yourself. You are not a doctor and what you think is normal/not normal...probably is not what they think is normal/not normal. The pain you talk about most likely is due to the self testing. I wont go into details of all the crazy things I did, I'm suprised I didnt break my neck...although some of the things were quite entertaining. :D) Lastly, can you not get up from a chair? Do you fall when you are walking? (and I'm talking more than just the klutzy things like I do) :) Can you still lift your cup to take a drink? These are the only "tests" you need to know that you do not have ALS, because ALS is NOT subtle...period...they do not come and go, once you lose strength its gone, never to return. There are always going to be the "rare freak exceptions" like the articles you describe, to anything...but they are rare for a reason, because they do not apply to 99.99999999% of the population. Get the anxiety under control...then you can work on the rest...and we will help you. :) ~*~Amy~*~
 
Sorry about the bashing. I was having a bad night with anxiety and that was the last thing I needed to hear. I will be more supportive in the future.True statistic - 1 in 165,000,000 chance of being diagnosed with ALS before the age of forty.
 
"The chance of getting ALS any particular year, when you are younger than 38, is about 1:165,000,000. Yes, one in 165 million people, a year. "
 
:eek: REALLY???? First of all you need to understand that YOU can't diagnose yourself. Next you need to understand that these studies that you look up are not meant to be read as "gospel". They are studies. Which means there are controls and then there are hypotheses and sometimes there are aberrant findings that have nothing to do with anything and these studies are not meant to be interpreted by laypeople nor are they supposed to be interpreted in a vacuum. You have seen a doctor who did an exam. If there was something that required further testing especially if it was of this magnitude it would be obvious on the initial exam. Next, I can promise you that likely there was far more to the story that just twitching for 4 years and then BOOM! See when we docs examine you, we are also looking at a history...yours and your family. We are looking at your exposure to toxins, your habits, your meds and then we are looking at the exam. We combine that with what you are complaining about (your symptoms) and then we can make a differential diagnosis. So I HIGHLY doubt that these were just "twitchy" people who then had the floor drop out from underneath them. Next, if you were examined and told it was not ALS why would you continue to investigate THAT? My recommendation would be first of all to stop trying to diagnose yourself, go and see a neurologist and get a good clinical exam. Then, stay away from reading studies chosen specifically by ONE symptom. Actually stay away from reading all studies if that is not your specialty. Finally, you don't need to apologize for asking questions or needing support HOWWEVER I would recommend reading some of the stickys like BFS in a nutshell, forum etiquette and also erroneous information from other studies and sites. We need to be careful and sensitive to the worries and concerns of everyone who finds this forum.Be well,Kit
 
In this case perhaps I should ask another question. ...Actually several.Has anyone had these things just come on suddenly.. Like one day you are fine and the next you are twitching like a fool? Also I went to a nurologist(no idea how i got in so fast .same day most likely because i did not care what time slot they gave me) I had the eng test done(same day also). He did my legs which is where the twitching is.. Here is another question it took him like 4-5 seconds per site with the needle part of the step he never had me flex the muscle just tested both legs really fast and said "you dont have ALS today". The NCT hurt too but found nothing. Unfortunate for me the EEG did find something I just have no idea what it is since the tech will not tell me..But she startet asking me weird questions after a particualr part of the test.Another thing I have is at night.. All the symtoms stop.no twitching. Same thing happens if I take .5mg ativan. After twitching for 2 weeks the stop is a strange sensation.
 
Thats why nobody yet have reported anything like it on this board. Have any of you won the BIG lottery-price? No? Uh, oh, probably not this time either... Imagine the population of Europe. Take two people under 40 and give them ALS. Thats the risk. And if you count twitching before weakness - its theoretical measures we are talking about. Like being hit by a meteor or something. Instead of being afraid of ALS (which we all now whats like) we should be concerned by the traffic or cancer. And if you live in the states, firearms perhaps. Im done being nervous. 1:165.000.000 is almost like zero. Thanks for that informative post.
 

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