Scared of Twitching and ***

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KarinJoy420

Active member
Hi everyone!I am so scared, I was reading that twitches can occour first with ***. My twitching has become so bad in one leg and in my foot, and my left leg seems to be getting weaker it seems to get worse in the evening. I read that with twitching, it gets worse until the muscle dies. I keep praying that I do not have ***. I am so scared!
 
Calm down...Twitches hardly ever are the leading or presenting symptom of ALS. Before the twitches there will be marked weakness and most likely visable atrophy. If I may ask, what is your age and do you have twitching elsewhere? DO NOT READ THOSE ALS FORUMS THEY WILL JUST MESS YOU UP!Be cool...Do not think the worst because you have one symptom that is SOMETIMES part of ALS. Remember many ALS patients do not even know they are having twitches and can not see or feel their twitches.Later...
 
You are right - I was reading on the *** website, and all the people with *** are saying they experinece the twitching before the atrophy!I AM SO FREAKED OUT!Thank you for listening, and I will not go back on that site! I just want to feel normal - you can read my post under symptom management elevated CK. I am scared because my doctors keep telling me that it is not normal to have an elevated CK. They thought that my CK was elevated due to the fact that my thyroid has been out of control for over a year (Hashimotos). I am 40 shhh! I started twitching a year ago, I am not any weaker, although I have notcied that my left leg has become weak, and that is where the twitching has been relentless! I am also an extremely high anxiety person!Thanks..... Karin
 
What was your CPK level? Mine was a little elevated. Most people with BFS have elevated CPK. There is no way for me to tell you what is going on with your leg, but I can tell you that the odds are very much against you having ALS. Those ALS forums are trouble. The people who post there do have twitches, but they also have abnormal EMG results and have atrophy and weakness. I think something like 6% of ALS patients present with twitches as their first symptom. Do not try to insert yourself into a disease symptomology. You can create all these symptoms in your mind...I have been where you are. As for weakness, how do you know your leg is weaker? Are you tripping, falling, not able to get up from your chair? Are you dragging your leg? Or maybe could it be that your leg feels like it is weaker because you are freaked out? Sit down in a chair and stand up. Walk down the street and back. Walk on you heels and your toes. I bet you can do all of those things, but in your mind you think you are wasting away. I have had this stuff in my head so bad that I thought I would collapse, but I never have. I can see what it is going to take for you...Go see a neuro and get the EMG done. CPK can elevated for a lot of reason. There are many things that can cause twitches. Please try to calm down. Later...
 
Karin,Hypothyroidism can, in fact, cause all of the symptoms you're complaining of. In fact, it's far, FAR more likely to be thyroid-related than anything else in your case, especially since you've got Hashimoto's.I actually had borderline hypothyroidism last year, but when I started having the BFS symptoms, my thyroid functions came back as normal. That freaked me out, since I had actually hoped they'd come back as abnormal so I'd have something benign to blame my symptoms on. Take solace in the fact that you're hypothyroid and have a very reasonable explanation for your symptoms and your elevated CPK.And rule No. 1 of BFS should be: STAY OFF THOSE OTHER FORUMS. THEY ARE POISON.
 
Backagain,May I ask how old you are? So, you have been where I am now? I am trying so hard to get it out of my head, I am having the second EMG this Wednesday (I am almost scared to go) for fear that it will come back abnormal. My first one was normal, as well as the nerve conduction. Yes, I can sit in a chair and still get up with no support, I can walk on my heels and toes. I just keep thinking that I have a slow onset of ***. Whay can't I stop thinking about it!Owiithurts,I sure hope your right that Hashimotos can cause all of these weird symptoms, I am reading a book on it (what the Doctors don't tell you) and a lot of the symptoms are in the book that I am experiencing. It just seems so strange that a thyroid can cause so many strange symptoms. I guess I am just freaked out because my last Endo told me he thought I had ALS, ever since then I cannot get that out of my head, that is why I went on the *** site, trying to convince myself that I do not have that, which in turn made it worse for me. So I will not venture there anymore!What are your symptoms?THanks - Karin
 
I am 37 years old. I too have had one EMG that was normal. A slighted elevated CPK level. And I have twitches, mainly in my thighs, but they pop up everywhere from time to time. I too have convinced myself that I have ALS. The only way to put it out of your mind is to realize that if you really had it, it would not show you mercy. In the vast majority of cases ALS is going to hammer hard and fast. Like to the tune of dropping 30 or 40 pounds in a few months. Seeing real atrophy. Dragging your leg or not being able to grip a pen. A guy in our town who has it is a doctor. He can not even squeeze the blood pressure cuff. Do not sit around and have ALS of the mind. I have done that and it sucks.Later...
 
Heed the good advice here. Yes, people with ALS twitch, but in almost all cases they noticed other issues prior, foot drop, trouble with speech, weakness etc, and when they see a neuro there is ALWAYS abnormal findings whether it be an EMG or observations and signs made by a neurologist. It is diagnosed quickly by a qualified person even in early stages.
 
Hi Paulzee,I have been to two neurologists, one at an *** clinic. I think that I am just so stressed out over the Endo telling me I have ***, after I was doing fine in believing that I just had BFS. I am also nervous because of the twitching/buzzing that won't go away in my left leg, and the hand weakness. So, if I have a clean EMG on Wednesday, should I say that I am pretty safe? I had one EMG in October, and it was normal.ThanksKarin
 
How can an ENDO or any other doctor diagnose a disease like ALS based on one result from a blood sample? ALS is a very difficult disease to diagnose and I am certain that it can not be diagnosed by simply looking at you CPK. You already had a clean EMG, that is the "gold standard" test for ALS. My brother has BFS. He went to a GP one time because he had injured his shoulder. His shoulder had a twitch at the time because of the injury. The doc saw the twitch then ask my brother to stick out his tongue. He did and his tongue quivered when he protruded it. The doc looked at my brother and said, "You have ALS." No EMG, bloodwork, spinal tap...This doc tried to diagnose AL*because of a twtich in the shoulder. Long story made short, my brother went to a neuro and had an EMG. It was clean. The neuro said that he GP who told him this should be arrested. I do not care how good a doc a person maybe, you can not diagnose ALS with one vile of blood and a reflex hammer. It takes a little more medical training than that. Let it go, the ENDO that told you that is most likely a complete idiot.
 
Karin,I just had to weigh in here. You had a clean EMG this past October, correct? You've seen 2 neurologists, including one at an *** clinic. I'm assuming they both gave you a clean bill of health, as far as NMD is concerned--is that correct? What caused you to get that EMG in October--twitching? October was not all that long ago--a clean EMG in October and some quack tells you that you have *** in January??? Most definitely, if you get another clean EMG on Wednesday, you are 200% in the clear; the one in October already put you at 100%. Personally, I think I'd tell the endo to take a hike. What an unbelievably insensitive and unprofessional bedside manner. Hang in there; you're going to be fine--but find another doc! What an absolute quack :mad: .Mark
 
Thanks Backagain!He is a complete ______! I am so nervous for this test on Wednesday, I haven't been able to sleep for the last couple of nights. I sure hope that my crazy symptoms are all thyroid and stress related (I see a new Endo tomm) hope he has some good news for me. I have been a little stressed out lately, my mother-in-law has pancreas cancer and is in the care of Hospice now, which means she could pass away any day. My twitching is out of control lately!wish me luck!Karin
 
Karin: My heart is with you. I am 50 and have been twitching for about 6 months now (wow it has gone by fast). I have not had an emg or a ncv because neither of my drs thought it necessary and I don't want to waste money on tests they do not deem necessary. I passed two clinical exams and that is enough for me. Yes, I do still have moments that I am scared, but those are becoming fewer. The doctor who told you that you have ALS without thorough diagnostic testing should lose his license. It was cruel. Actually, given the tests you had already had, I don't even see how he could make that call. YOu are under a LOT of stress. Many stressfull situations. Try to find a place of peace and rest assured that you are not afflicted with a deadly illness. Please pm me if I can help in any way.Cindy
 
HiYou ask why can you not stop thinking about it? well i will tell you, thinking about it is part off the condition of BFS. Yes hard to believe but, it's true. This is one of the top symptoms of bfs-pnhe. This thing plays mind game with you at the start of the condition. I was like you some years back, but i am now 100% mentaly fit. I would never believed i would get over those dark days. But there is improvement with this condition, honest.I will send you some info by pm to help you understand what i am talking about and also understan the condition.Fight onChris
 
Hey Chris:Would you pm that same info to me. I have never heard of the mind thing being part of this syndrome. I know there are times that I feel like I have woken up in the wrong part of town or in the darkest part of the woods. I manage to pull myself out of it now, but several months ago I was drowning. Today I am experiencing one of those times. Thanks a lot.Cindy
 
Hey everone - Thank you all for your posts - I haven't been on lately, due to my mother-in-law. It is horrible to see somebody suffer so much and there is nothing you can do. I am trying so hard to deal with this (BFS) - I was doing great for about two weeks, I saw a new endoncronologist and my Thyroid was finally within the normal range and I felt great no twitching or pains in the thumb pads, etc.. for TWO WHOLE WEEKS!The leg weakness has returned in the left thigh after taking a short walk with the dog and the pain in my thumb pads in my hands have come back --- shoot I was doing so well...oh and the twitching, of course, has returned. I know that I need to get the anxiety under control - does anyone have any suggestions, besides drugs?I am so grateful to all of you for helping me. I am sure a lot of the symptoms have returned because of the stress I am under. I am trying to keep a positive attitude and not think that I have that horrible diease.
 

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