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Showing content with the highest reputation since 12/17/2018 in all areas

  1. 6 points
    I've been on the als boards and not one personal story says it started with twitching. And three years to see if it's als or bfs? Bull! You will know.its als Bec a muscle stops working.. what in the world!!!!!!!!! Y'all have got to stop this. Als is about failing PERIOD!!!!! Do whatever y'all need to do to move on...please. but yall are just getting one another false information and fueling y'all's anxious minds.
  2. 5 points
    Yes I get muscle twitches, all the time. Probably over 50+ a day. But when I’m doing something physical they go away. I’ve had these twitches for more than a year now....I just never really honed in till I googled about twitching. But since I had them for over a year...I should of have been in a wheel chair by now. ive had days where my anxiety actually took over and I felt that I couldn’t even walk, lift up my hand, etc. i forced myself to change. I got a new labor job, where if something was wrong I would literally know by now. I took this post from the ALS forum and pay attention because this is a highly concerned, her husband isn’t able to touch his thumb to each finger. I pray to God that it’s not ALS but it’s a very high possibility from what PALS have commented. ITS NOT A MUSCLE DISEASE. ITS NOT A MUSCLE DISEASE. ITS NOT A MUSCLE DISEASE. It’s all about the NERVES. By the time you notice that your muscle is atrophied, at that time you wouldn’t be able to walk, run, walk up stairs. Brush your teeth, etc. it literally just stops. Think rationally. Think as of, if you had Diarrhea and you google diarrhea it’s gonna say cancer or something else. TMI but I get the squirts when I’m anxious. It just happens. Theres so many people posting about ALS on this forum. We forget that it’s a RARE....I repeat, A RARE disease that’s statically proven its the same as getting struck by lighting. Its 2019. Don’t let your anxiety take over, it’s going to be there but it’s up to YOU to change that. Godspeed.
  3. 4 points
    Good afternoon people, I just got out of the Doctor's office. A few things that the doctor told me that I thought were useful to share for those that have anxiety over ALS , including me. - He said he can almost always spot a ALS patient from the time they walk into the office, without even saying a word to them - He said he has never met a ALS patient that started the disease by twitching. Usually it's limb weakness -He also said if you have been twitching for 1 year and a half to 2 years and it was due to ALS. You would be in very bad shape. It would be very noticeable. -He also said the muscle waste in ALS patients is very clear. He says it happens very fast and it's noticeable - He said that ALS does not cause any tingling, numbness etc. He actually showed me in a drawing how ALS works and attacks, and showed me how the area that affects sensory it's outside of that and it's never affected by ALS. My test went well , he never noticed anything abnormal. He still scheduled an EMG because of the tingling sensations I have been having and numbness. He said he is 99.99 percent sure that I don't have ALS. He said he doesn't like to ever say 100 percent. We also spent a lot of time talking about anxiety, it was clear to him that this was taking a toll on him. I showed him my foot and he examined it and he didn't think there was anything wrong with it. I pointed to him where the tendons stick out more and then he out out his hand and showed me how his stick out as well lol . Overall I am very satisfied with the visit, he said he has spent sometine of his career dealing with ALS patients. My foot it's still a little concerning to me and obviously my numbing and tingling . But after seeing a specialist I am a little more at ease Now, we have to wait for the EMG and hope for the best. Thanks, to all of you. You guys were very supportive and patient with me while I was going through my crisis. I am not completely over it yet, but I am doing better.
  4. 4 points
    EMGs show a lot of things beyond just MND/ALS. Your EMG in a broader sense was not "clean" in that it showed irritation. Extremely common, treatable, and nothing to worry about. I have no idea about the hyperreflexia, but can be caused by many other non-severe conditions and is also just idiopathic and benign in some people. The neurologist looks at the whole picture of symptoms; mere hyperreflexia means nothing with respect to ALS/MND. YMost importantly, your EMG was clean for purposes of MND/ALS. Your neuro told you so, and trust me, when a neurologist sees a problem, they tell you and do not just send you off with Klonopin. You need to let this go now. Don't be one of those people requesting multiple EMGs and getting a third, fourth, etc. opinion. Go celebrate!
  5. 4 points
    Once you stop obsessing over them, the voices and symptoms will go away. There is no way your doctors missed anything. You will always be stuck with HA if you don’t learn to let it go ESPECIALLY once you’ve been cleared by a SPECIALIST. Please don’t ruin your life trying to find something wrong. There will always be a symptom.
  6. 4 points
    I am sorry that you are going through that, I myself have been there for a while. I know how anxiety can get a hold of you and consume you. Matter of fact , I am not completely over mine yet. It is almost impossible for ALS to start with twitching, I have done hours and hours of research man. 100 hours plus easily. Twitching is not something that neurologists even get concerned about regarding ALS. I have had mine for 18 months, they are still doing tests and what not. But , by the time you get twitching in ALS, something else should be noticeable. The disease hits you quickly. From my research if it's spread throughout the body from the get go. It's even less likely to be ALS.
  7. 4 points
    Ugh !!! I replied to this post right before I went to bed... sure enough, I had a dream I had a huge lump on the left side of my stomach, I kept feeling it and feeling the other side, it was the size of a softball. I kept thinking it's ok, it's ok, it's smooth and not bumpy .. but I was scared in my dream. That's unreal
  8. 4 points
    It seems a lot of members may still be having trouble posting new threads and replies. Someone PMed me on another forum and told me they still can't seem to post here. Don't be discouraged if you're hardly getting any replies, hopefully the issues will be resolved pretty soon.
  9. 3 points
    So he said pretty much everything Holls and others said 😊 Obviously none of us are doctors and we can’t diagnose anything, but there are some very knowledgeable people on this site with experience dealing with the same fears. It is wise to believe them when they say it’s not ALS.
  10. 3 points
  11. 3 points
    You picked one thing you read and anxiety twisted to something you feel and it fueld your als fears?? What about everything else he said? All the other obvious reasons you don't have als. You are not thinking rationally. You are not getting how this disease presents. I'm sorry if I sound harsh but your anxiety is not grasping how als works. When you go to your next appt..write down every single tiny concern and when you get the all clear you have to let this go.
  12. 3 points
    you cannot have your EMG too early, 70% of the nerve fibers are dead way WAY before you feel any weakness, the test would definitely pick that one up. Weakness in ALS is the follwoing kind of weakness: - You cannot lift and move your own finger/hand/leg etc. - You cannot walk up the stairs without external support - The twitching would've started way after the muscles became weak(the ALS weakness) - You do not feel weak in ALS, here's a good quote on it
  13. 3 points
    You went to the Dr and the nuero exam he did was all normal.. that's it. You don't have anything concerning. I wouldn't even search this forum for other posts.. this worry should have stopped the moment you got the good news from a DR..hugs.
  14. 3 points
    Well, there is an answer and it's fairly simple. When we get anxious the muscles in the body tighten. (Back to the old fear thing and ready for flight/fight!!). This varies from person to person and is always involuntary You have no control over it. It's nothing to worry about and having a panic attack just makes it worse. When the muscles in the scalp tense up they can cause the typical anxiety symptom of a tight band round the head. Often there is a sudden release of that tension and that's when you get the 'zap' effect. It can vary between a little spasm or a big thump. It's not at all uncommon in anxiety. There's nothing wrong other than the anxiety. OK??
  15. 3 points
    Idk why I can’t get this thought out of my head, that I have ALS. Then don't try. Let it come so you can reason with it. After all, it's only a thought. I know how powerful thought can be, but if it's not true, as in your case, then why give it any sort of credence. You can think about the weather, but you can't make it rain. You can think about ALS, but that does not mean you have it or are likely to get it! You can think about winning the Lottery but it doesn't mean you will! . Bin is so right. Googling in anxiety is very foolish. You are looking for reassurance when you have been told by those whose job it is to know that you are OK. I am NOT minimising your genuine fear, but can you sit back and realise how you are being fooled by looking at Dr. Google? You are vulnerable and susceptible to suggestion. Anyone with HA is. That's the problem in every case, they don't believe their doctors. Doctors can ill afford to make mistakes.. The likelihood of you having ALS after all the tests is so unlikely that you are flogging yourself needlessly. I know what I and others have said may not help at the moment, but we are on this site to help each other and can only go by past experiences. If I had a pound/dollar for everyone who THOUGHT they had ALS I would be very rich!!!!
  16. 3 points
    I strongly advise against going to Google and ALS communities online. What you've described is exactly why I say that. Google itself is not the problem, the anxious response to the results is the problem. Until you can logically read and accept what you read there, stay away. In the meantime, I also highly recommend seeking help for anxiety, such as therapy. Talk to your doc about it next time you see him/her.
  17. 2 points
    @Cubanborn87 I think you’re just hyper focusing on your twitches....which will make your twitches worse. Some days my left calve twitches like crazy and some days it’s my right. I used to think when I had my “A” episode I thought it was only twitching in my left leg. But I noticed it’s both of my calves. even a person a that has “A” explained to me, “twitching means nothing it can range from one spot to all over, with our clinical weakness it mean a nothing.” Believe your docters, believe the people that have been going through this way before you. Shout out to @Holls & @sTeaLth they really helped me get over my fear. Of course it’s in the back of my mind daily but when I’m busy with work or etc I forget about it. Which means it’s only getting better from here. It will for you also.
  18. 2 points
    Stay off the internet and just get sleep and drink fluids. You’ll be better in no time! Reading those stories are just fueling your anxiety, and getting a serious infection after the flu is rare. Why put yourself thru the worry if you don’t have to? If you need something to keep you busy watch some movies or play a game on your computer/phone. Don’t google!!! My whole family has taken Tamiflu with no issue other than nausea. For every story you read about a bad reaction there are hundreds and thousands that were fine. But yes, if you didn’t take them within 48hrs of symptoms starting it probably won’t help much, you’re already on the way to recovery!
  19. 2 points
    How does he know the difference between irritation and MND? Years of schooling and experience maybe? You really need to trust the doctor on this one. You’re way over thinking and questioning things. What might seem like a blurred line to you is undoubtedly a distinct black and white picture to the doc.
  20. 2 points
    I get it. Trust me I do. I’ve been down this als trap for 3 weeks now and it literally RUINED my Christmas. My favorite holiday. I am so mad about it. Anxiety is such a terrible thing to suffer from BUT we can get better. Please stop reading on ALS. You see your Neuro tomorrow and will know all the answers. Please let us know what you find out!! Praying for peace!
  21. 2 points
    Doxie and Holls are the best!
  22. 2 points
    @A11yance but do you see what the doctor told him? Pretty much everything we said right? When you leave your appointment tomorrow, drop the ALS. Log off this site and don’t look back.
  23. 2 points
    Hi. CW. Yes and all of them could be symptoms of nothing or everything. One sure way of finding out is to get medical advice. Once told you are OK, BELIEVE THEM. Now there's the problem with HA. We tend to second guess those who are trained and know what they are about. It's sad really that so many sufferers suffer more because of doubt. Once the mind focuses on a particular problem it's difficult to get it off it. Distraction helps but you have to come back again to your thoughts and reality. Let the ideas and feelings come, but see them for what they are, only thoughts in a tired mind which never killed anyone.
  24. 2 points
    I know what you're saying with this. The hospital, and now the counselor coming to the home, all find zero evidence for things such as DID and bipolar. They know she's fabricating some / a lot of these things. Especially because when they ask her to describe certain things - symptoms, coping skills she claims doesn't work, etc - she gets argumentative, changes the subject, and she simply can't describe in any level of detail the things she says she's experiencing. I understand, and the professionals tend to agree, that it's likely difficult for her to comprehend what she actually is dealing with (e.g. depression/anxiety, PTSD) so it's not easy for her to articulate what she really feels. On the other hand, much like myself, she's very intelligent and she's also very analytical. She reads about various conditions like DID and begins projecting the symptoms and/or telling people she has it. Sounds VERY, VERY FAMILIAR. LoL. Health anxiety, for me, has been very much like that. The only part that truly frustrates me is the fact that she won't even attempt to help herself. She doesn't try coping skills, she simply dismisses them. Her guidance counselor at school has told me many times that she's recommended my daughter try particular coping skills, and my daughter becomes argumentative and defensive, and sometimes "storms out" of the office. She also tends to use anxiety as a crutch. She'll speak with a disrespectful tone to the other kids or whatever, and she'll instantly blame it on feeling anxious. Time will tell. I hope all we're doing is not in vain, and she ultimately realizes that she must do her part. Thank you for sharing your thoughts. It's much appreciated. She is doing a good bit better these days. Not nearly as depressed, though obviously not "cured." But she's been in an overall positive/happy mood.
  25. 2 points
    Hi Tinn, I'm sorry you are going through the motions currently but it just confirms what a good Dad you are, you have her best interest at heart for sure. In my career I have worked with chronic mental ill patients and also with youth who were neglected or abused. I can tell you a lot of kids pick up dx's in hospital settings and really do believe they suffer from the things she mentioned. You can't force her to change her way of thinking currently. Just think about what anxiety does to us, we are so convinced we have a physical disease or that we are going crazy. I think the same thing is going on here, I have seen it many times especially with girls around that age. I used to work in a group setting with girls from the age of 12-18 and the symptoms and conditions 'jumped around' the entire group, so to speak. And puberty and hormones sure can add to the stress she is experiencing. What I have encountered, "all my kids" from work fabricated stories to get attention, I have heard some wild stuff. They do it, in short because their emotional and physical needs were not met when they were small. They test if they can really, truly trust the adults around them. It's a long process but I think you have gotten full custody when she was still young enough and you working with all the professionals gives her a great chance. What can you do? You can reassure her of your love and the same for the rest of the family. When she tests you by acting out with telling you she suffers from such and such, just think that right now you can't convince her. Just like you couldn't convince yourself when in the middle of anxiety. Reassure her she is safe with you, she can trust you and openly talk to you without getting punished for it. At the same time it's important to say: " I hear you about you thinking you suffer from such and such, no matter what you suffer from we are here for you and will be. I don't see any evidence of this going on but we are here for you. What is really important also is a routine, hold her accountable for certain things without undermining what she feels and thinks. Socializing with friends is also crucial. I personally would monitor her online activity so she doesn't get a chance to dig deeper into the dx she thinks she suffers from. I think you are well on your way to having this. It's my understanding she was recently diagnosed so it's to be expected that it will be bumpy for a while. One more thing comes to mind. It's not so good in my experience to use a lot of labels (and those are sometimes misused by teens!) , yes she suffers from certain things but there is more to her than her past or the way she was socialized or the mental challenges she is facing. But of course I understand your focus currently and you have my empathy. I was just speaking about the long term prognosis I have encountered professionally and it wasn't half bad. My best Wishes.