Two Years Of Joining: Reflections

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J

jerryTwo

Well-known member
Well, in a few days it will be 2 years since I first posted here:It is funny, I was scared to death, but I am still alive in 2 years. Mind really can make wierd things to one.Anyway, to all the newbies. I am not exactly a book case here, twitched, looked on the net, fasciculation all over, went to neuro and he said everything was fine. First part is true, but I had some other symptoms as well. And the neuro didn't say everything is ok, but found atrophy on my hand. He told me to go to EMG, but since he said even EMG will not 100 % tell me what is wrong, I didn't go. I didn't go then and I didn't go later. I never had an EMG. I was too scared.People on this forum told me I am a living anxiety and banned me on the chat. I survived. Now after 2 years I can say I am mentally better. I still have problems, unfortunately. Same, some less, some more, I struggle every day, but not so much with mind any more, but with body.I wish I can tell you it get's better for everybody. Let's see, what problems brought me to this board:1. Hand and arm tremor every night at around 5 AM for the last 2 years - this months it is not every night or at least it doesn't wake me up every night2. Paresthesia in bothj my arms and hands during sleep (mostly) and during the day. Now it comes and goes, I have better and worse periods, but I have to be careful how I sit and bend myself.3. Twitching - started in my atrophied hand (index finger twitching) and spread all over over the next days and weeks. It is always there, sometimes it is very bad with bad hotspots that last for weeks :( Twitching thumb, twitching instep, twitching arms, back, etc... I've got them all or had them in one point, even abdominal strong twitches, the wave twitches online neuro told me it is not BFS etc. Only thing I still haven't got is tongue twitching, although my tongue does have a very bad tremor if I stick it out.4. Joint pain without swelling and redness. It jumps from joint to joint in my hands and lately feet. One joint can be painfull for months and then it jumps to other places. Worse was few months ago when I had 4 fingers and 1 toe pain :(5. Ankle pain - lasted for a year and I still have it some days.6. Nerve pain in instep - I still have hard time wearing shoes because my instep pain. Nerves there are just... acting wrong.7. Buzzing - Last buzzing was in my instep yesterday, but I regularly have them, mostly in feet and at the beginning they lasted for months :(8. Bad sleep - because of all the twitching, tremor, paresthesia that is worse at night, I do not sleep well.I think I've almost had it all :) I still believe this condition (at least in me) is not the result of anxiety but a source of anxiety. Even if some previous life conditions triggered this, I believe this is not anxiety any more, it is a defect. I have to live with the new me, uncapable of lifting heavy things because of pain, I can not run any more etc... I am stil not used to it, but I am getting there.Do I still fear ALS? Sometimes, but the hotspot must be really strong, really wierd and really long lasting. And I am not that scared like I was. I am a computer engineer. I think I can not have ALS 2 years and not notice weakness. So it is not in my mind very often, but I still remember how I was and how I am lucky not to have it.SOme people on this forum are only responding like this is all anxiety. I believe it is not. It is a defect, a condition. It doesn't kill you, but the electricity, chemically and phisically there is something wrong. Because if it were only anxiety I would be physically better but I am not. I do not believe it is ALS but I still twitch like crazy. My mind is better buy my body is not. I think I have to live with the "new me" that got me changed 2 years ago. Prior anxiety may be the cause, but the damage was permanent I guess in me. I hope I will not be any worse, because many people are doing far worse than me.I do not go to doctors any more, because they just scared me from day 1. They offered no clues what is going on and the anxiety is just a handy thing for everything this days.So am I better after 2 years? Mentally, 90% better and I was low, very LOW! Physically... dependss on the time. As long as I blink my eyes and the eyelid twitches for 10 seconds I know this demon is still inside me. I've been to doctors, kyropractioners, all kind of alternatives, chineese doctor told me I have too many problems to heal me, I went to Joga, tried 101 tablets, vitamins etc. (just didn't announce it so loudly as some others on the forum), then I gave up. I don't know what is wrong with, but I guess the new me will be there for a long time.People, it doesn't kill you, but it can make your life miserable.Thank you all who have been kind to me this 2 years. To the others: I am not so mad as you thought. I wonder how you would react if you got fasciculations and the doctor told you you have atrophy etc.I wish everyone here as few twitches as possible and remember: Even if you are scared to death as I was, it doesn't mean your life is really in danger. Don't try to be who you were, try to be who you are now. I've got 101 symptoms and I am still with them and still going strong.Take careJerry
 
Excellent post.And...I would add that blaming anxiety for everything is blaming the unknown. How does anxiety really happen? Why some people are more anxious than other? Can anxiety be the biochemical, neuro-physiological result of far more complex situations? And if so, why?I am trying to do what you do. Some days is harder than other days. But, I keep active as much as I can and I try to take care of myself. I am not sure we can do much more than that!
 
Yes, that is exactly it. What is anxiety? That I am nervous over the limit? Well, I am not and I was the most after I started twitching and thought I had ALS :( I don't believe anxiety did all this to me. I believe there are many unknown things in this life and body...Let's see... If I remember correctly there were about xy millions people in US alone with stomach problems before 50 years. They were told this is anxiety, as they couldn't find anything wrong. After some years they discovered the heliobacter Pylori bacterium living in many people's stomach (in many without problems also!). Suddenly, the stomach problem was gone after treatement for 50% of the suferers.3 months before all my problems prior to BFS started I was poisoned to such extreme I was unable to walk for 12 hours, I just had throwing up and diahhroea every 3 minutes. I thought I will die that day. I got some xyz thing after renovating old pipes in old apartment, must of been bacteria or virus. I was never the same with my stomach ever since. How does anybody know all this is not just some after effect that poisoned my body?I am on a healthy dies, I do not eat sugar, potatoes, white wheat, only full corn bread... since january. It is good for me, but it does nothing for my problems. I am doing everyhting that I can to live healthy, but the damage is done. I am not saying I am dying I am just saying in this 2 years I found out not everything that is wrong and unknown to doctors is anxiety.On this forum some people repeat day after day everything about twitching is anxiety. They are like old record playing over and over again. They never get bored. The want to calm people I guess, but the ones like me get frustrated when we lower anxiety and it doesn't help. Not everything is anxiety and not everything has a diagnosis. It seems my problems do not have a diagnosis, which I look at POSITIVELY now.Anxiety seems to be more of an after effect of learning about diseases than anxthing else.And yes, you can not do much else than taking care of things, people and your body as much as you can. I finally realised I can not solve everything I guess and the doctors also can not. Thex are notoriously anxiuous if they can not diagnose you.I never regretted the decision to not go to EMG. As I do have some hand atrophy (nobody knows since where and it seems it doesn't progress), I could have dirty EMG and I would be going over some even tougher times with "can be anything" statements some forum members got where they were false positively diagnosed. I would say, without weakness, no need for EMG. The doctors can not help your mind with EMG and there can be false positives which can destroy you.And I really know so much more anxious people than I am and none of them twitches. Saying twitching is result of anxiety is not correct IMHO. Of course anxiety makes matters worse in twitching and other things, that is for sure. But I start having 500% more twitches out of the blue now.I just really wanted to say hello to all that wonder where I am, I used to be so scared and active with scare here ;)
 
Hi,nice to see you are fine.I just wonder why you and other people seem to believe that anxiety is something isolated... something completely not related to the condition we experience.First of all, people come here after strong stresses usually. And anxiety becomes often only aggravating symptom of PTSD, however very important, and without working on it it appears quite hard to quit ALS fears and generally alleviate our condition.But anxiety and stress do physical damage. They alter our body chemistry, they assist in chaning neural paths in the brain causing extreme emotinal twists and they may be a trigger for immune reactions causing our muscle membranes to pass more signals with lower thresholds causing twitches.Much more important is that anixety causes many symptomes common in BFS EXCEPT the twitches - globus, esophagal and cricopharingeal spasms, hyperventialtion and related sleep disturbances and sensory issues, which our fellows consistently mistake for synptomes of bulbar onset, damage of CNS (central apnea, whichin our case is due to low CO2, and in case of MND is due to deficite of neurons in breath controlling center), etc. etc. Brain paths alteration caused by anxiety forces our fellows to do selftests up to real damage of muscles and ligaments, measure their bodies trying to find atrophy and alters selfperception in a way in which slight symptom because a huge one. It changes completely all life and attitide and in very destructive way. Isn't it worth to be focused then?Anxiety is a big part of our syndrome and needs treatment, specific one, quite often.Yes it would not stop twitches becasue something had really happened and impaired our muscles. But some people after first bout of essential anxiety in their lives would never ever be the same on psychological point of view. Not only their body suffer but personality too.That is why many of us constantly and repeatedly focus newcomers on their anxious mode - to point to a factor which aggravates physical suffering, adds 'symptoms mistaken for ALS ones, and that one which is fortunately treatable. Who knows maybe years of relatively stress free life can heal also our muscles. I twich much less now that in the beginning - so somethig beneficial happens.no matter if once a bacteira would be discovered causing your and mine muscle twitch. The fact that people become irrationally anxious due to twitching, hyperavare of their body functions and irrationally believe of having deadly disorder would not change becasue of that, and for sure there is no bacteria or virus responsible for irrational fears which cause much more suffering than any twitch, cramp or muscle pain itself.so those who point out to anxiety-associated symptoms and behaviour do their job, and I personally believe that we are pointitng to a real disorder and enemy to fight. Nothing we can do to stop twitches, neither doctors can for now. But we can stop anxiety associated to this, and then twitches become much less bothering issue, that is all.
 
I can't wait for 2 years to go by and not have any weakness. Every day I worry that it will happen. Anxiety is definitely part of all this - in the last year I've had all the symptoms - swallowing, ibs, pain everywhere, panic attacks, chest pains, breathing problems. All investigations come back ok. I think the twitching for me (when I'm not panicking about ALS) IS a manifestation of my anxiety and I'm hoping time will show this.
 
Gracely, I understand what you are saying. But please leave option open about this is not JUST anxiety. It may be because of anxiety, but it is not anxiety any more, it is some kind of damage to the body. I am defective now for 2 years, but I am not anxious any more. The twitches bother me because they distract me when I want to sleep, I do not think of ALS when I twitch.I am also on our local anxiety board. Out of 20.000 members only me and another person twitches. Now if it is anxiety, it is uncommon type (common type being stomach/colon problems, headaches, vertigo etc.). You say everybody here is anxious when he comes here. I understand, but if you join the anxiety groups you realise almost nobody twitches. And anxiety is common!TO me at least, everybody talking that this is only anxiety here made me want to get rit of it and I did, for the most part. But the body is like it was. It is damaged somehow. Not deadly, but it is not functioning properly any more. It would be easier for me that somebody told me I should get used to the new me, not want the one I was before back, because it may not happen to everybody. Lessening anxiety that COMES with researching twitching on the net is a huge relief, though. But there may be a millions reasons for this condition, you and me may twitch for the different reason than I do. It may even be only some wierd anxiety manifestation, but it may be something different, not ALS/MS of course.This is just my observation over the last 2 years.
 
Jerry,I'm so happy you posted this. I know you have been through the wringer with this, as have many of us. Thanks for sticking through with us, and I'm glad you're doing better at least with anxiety.By the way, my thumb is still twitching!! Over two months now. I think it stopped for a little while or really slowed down, but has started again. And, I noticed my thenar of that hand is smaller than the other. Awful stuff we have to deal with.Hugs,Mitra
 
Mitra, please remember my experience. Since my neuro told me I have atrophy and I saw my thenar and interossei really looks atrophied... I looked at it every day and I noticed it is getting more and more atrophied. I took about 400 pictures of the hand in the last 2 years. It took me 1,5 years to realise the hand is the same, my imagination and focus on it did this to me... I hope you will not do the same mistake as I did.Don't mind the twitch, my foot is twitching so strong it is like a heartbeat for one month now, nonstop. It is part of the same disability you and I have... Just observe it and say thank you for doing excersise instead of you. A joke I know and a bad one, but if you could do that you'll be happier.
 
Glad to see you are doing better, Jerry. You've been through a lot and I hope you continue to improve and put these fears behind you.SAM- Yeah, I was on the edge of my seat as well, but I think my anxiety is higher now that its over. What an amazing show which will no longer keep me entertained since its over. It was a great finale but a sad day at the same time.
 
Thanks for your nice reassurance, Jerry. I have been a little obsessed with the difference in size between the two muscles, especially since it's on my right (dominant) hand and should be bigger than the left, not smaller. But, I have to remind myself that the twitching either went away for a while or subsided, and now it's back. The break from twitching must be a good sign! I hope that I'll have some more breaks!And, SAM - you're right - my thumb was twitching like crazy during last night's finale. LOL!Mitra
 

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