Coping Strategies for Fear of ALS

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NervousnessNoMore

Well-known member
Ok, I have read teh BFS survey (well many pages of it). and almost all of the people on there say that have anxiety, and were/are scared about ALS. I would love to hear some strategies of how to get rid of this fear. What did you do to feel better. I am so tired of feeling this way. I have not had an EMG (and am not sure I want one). I have been told by my neuro that without weakness they couldn't make a 100% call on ALS anyhow. So I kind of feel like what's the point. I am almost positive I have GERD as I have almost every symptom of that. Now the question is what is causing the GERD. What is running through my head is that GERD is caused by lower esophageal sphincter weakness. Which in my mind is possible bulbar. I don't have any idea if bulbar onset could cause GERD, but that is my fear. I have had this for 3 months, with no progression. If anyone has some strategies to help I would appreciate it greatly. I wake up everyday terrified this will be the day that I notice something wrong......
 
Sorry you are dealing with this, unfortunately I know where you are coming from. Its frightening to get an EMG, but if you do have one it may lay a lot of your fears to rest, certainly its a personal choice, and there are plenty of twitchers here who haven't had one.Keep your mind active and your body as well, exercise if you are able to, do not read anything online (I foolishly did a lot of this for reassurance and it only put more doubt into my mind) - except at this site is OK (infact read as many of the posts here as you can), and post your fears here, everyone is cool here and most have or are going through the same thing. Count the days, it goes slowly, but in time you will realize you are OK. Expect some dark days, catatonic hours, you are human. Warn your family and friends about your dark days they will understand and try to keep a strong front. I need to read your previous posts, not sure what any doctor has said to you, but put your trust in what they say, get another opinion for reassurance if necessary.
 
Does an EMG 100% rule out ALS if it is clean? And is that what a neuro has told you. I told some one else I am "reading" so many different things about people getting clean EMG's only to find out later they had ALS. At this point I don't want to hear "well I read this some where...." because I have probably already read that. If neuro told you that an EMG is a 100% way to rule out ALS I would be interested in knowing that!
 
Thanks robbie.....thank really doesn't make me feel better. :oops: I have realitively severe anxiety right now, and you put in my head.....why bother if you have it who cares......There is nothing they can do. I am looking for ways to reduce anxiety not make it worse. If anyone can help me please respond! I don't want to wake up feeling like this every day anymore. Twitching for better than 3 months, with NO weakness. I am 31. I am so afraid of ALS. I would fee so much better if I knew that 3+ months with no change, plus my age, and no weakness means that I am all clear. I hate this!
 
If you have a clean EMG, that is one more reason to believe that you don't have ALS. If you are looking for reassurance, that is as good as it gets.
 
AHHHHH...this is driving me crazy. So basically, twitching can be a sign of ALS, and there is no way to know, so I should just sit around and wait to see if it ever gets worse. That could take months or years. My neuro doesn't want to see me unless i have weakness. I got the impression that the EMg is worthless without weakness because they can't say one way or the other. So if there is not way to rule out that random bodywide twitching and a lump in the throat feeling is not ALS, how do I cope with this?
 
Robbie, that does help. I don't have any weakness or reflex changes. Neuro said my clinical was completly normal. I can swallow, and talk just fine. I think I could deal with the twitching if my throat wasn't funny, and I could deal with my throat if I wasn't twitching. It's the combination of the two things. Neither of which are constant throughout the day. And my subconscious mind is the real problem. I can get through the day if I am busy, it's sleeping at night that is the problem. I wake up at 4am everyday with a feeling of fear. I don't know how to stop that. Some one please help me!
 
Ok I still am looking for suggestions for coping with anxiety. My biggest problem is waking up with fear every morning. I can usually fight it off during the day, but that initial rush in the morning is a bad habit I would like to break. It's hard because you almost can't control it. It comes on fast as soon as i wake up. Like I said usually about 4am. I know there is almost no chance that this could be anything serious (but there is that little ray of doubt that creeps up while I am sleeping). This would be so much easier if there were a test to diagnose ALS. None of us would have anxiety then. Sadly there isn't anything fool proof, so I need to get rid of these thoughts. My hope is that people who have truly gotten over their fear respond to this with idea that could help me and everyone else!
 
I think my big problem for the EMG is that my symptoms are WAY to inconsistent. I couldn't show him a twitch in any one area because I never know where the next one is going to hit. The only real consistent one I have is in the left side of my neck and I am pretty sure that is residual recovery from the Bell's Palsy that I had (4 months ago, recovered all movement 2 months ago, been twitching for almost 3.5 months). If they stuck a needle in there they would probably see nerve stuff since I did have nerve damage there, and that would just make me worry more. I don't have any other "hotspot" twitches, so where would the stick the needle. They may not be anywhere close to the problem. Also thanks for the suggestion about going ahead and getting up and doing something. Perhaps that will help!
 
In answer to the question asked....I too also take lexapro-that helps. I also find sport/exercise helps. Exercise promotes endorphins in the brain giving you that natural high. Also staying active ( busy) Probably by keeping your mind off it. Sitting around 'stewing' just makes it worse. Go out and do something you enjoy.cheersRodger
 
ok, for the people who took Lexapro. The docs gave me a trial. I took ONE (and only one) in the morning one day. By that night I was hyper. thought I was losing my mind. I didn't take another. Did it heighten your anxiety when you started it? also how long were/are you on it. I don't think I would want to take anything forever. I do have Ativan as needed now, and it works. Docs gave me 60, half mg pills. I can take 2 per day as needed. So basically I had a 1 month supply. That was 2 months ago, and I stil have 7 days worth of pills left. Haven't taken it since last tuesday.
 
If you want to try a natural herb that helped calm my anxiety, you can give Valerian Root a shot. Depending on the potency of the brand, I'd take between 2 and 3 capsules about an hour before bed. It always did the trick for me. Just a fair warning, it has a distinct odor, but its normal. I liked it because the potential side effects were far less severe than most of the prescription anti-anxiety drugs. Do your research and make sure its right for you. I had nothing but positive results with it though. It might be worth a shot. Good luck.
 
Mario, I did not have any issues when I started on lexapro. They took a while to kick in, but once they did no issues at all, bar maybe a dry mouth or weird taste sensation-nothing too bothersome. I am still on them- 8 months later- no probs. I reckon give them a couple of weeks at least, until you system gets used to them. Certainly helping me.cheersRodger
 

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