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  1. 5 points
    UPDATE!!! MY AWESOME DOCTOR JUST CALLED ME TO GIVE ME THE GOOD NEWS MY CT SCAN IS CLEAR!!!!!!!!!!!!!!!!!!!! NO TUMORS NOTHING!!!!!!!!!! Just the hemangioma I have in liver, which I knew from U/S. They still can't see the right ovary, so they think it's atrophy, which I was told that before. Other than that I am good!!!! Thank you all for your support, I don't know what I would have done without your support all these days!!! You guys are awesome!!!!!!!! HAPPY THANKSGIVING EVERYONE!!!!!!! Love you all!!!!
  2. 4 points
    Hi Larizza, As others have said, ALS anxiety can be particularly bad to overcome; lots of us here have struggled with it. That said, you do not describe the symptoms of ALS. As an initial matter, shaking and tremors are not symptoms of ALS. They can be caused by lots of other things, including anxiety and benzo withdrawal. If you are not familiar with the panoply of neurological symptoms that can accompany benzo withdrawal, look up the Ashton Manual, published by leading benzo withdrawal physician Dr. Heather Ashton. I myself experienced these symptoms after tapering of a low dose of Lorazepam/Ativan, having taken it for only 2.5 months. Benzo withdrawal can also take a long time (weeks to months). However, if it persists or gets significantly worse, go to your PCP for a checkup. Tremors can also be caused by a lot of other benign conditions, such as essential tremor, etc. But rest assured, it is NOT a symptom of ALS. Likewise, polyneuropathy is NOT a symptom of ALS. ALS is not a disease of the sensory nerves, so symptoms like burning, tingling, numbness, pins/needles, aches/pains, etc. point away from ALS. The hallmark characteristics of ALS are non-painful, non-sensory progressive clinical weakness. Now, for tongue twitching. Twitching of any muscle, including the tongue, is not diagnostic of anything. Twitching can result from exercise, dehydration, nutritional deficiencies, electrolyte imbalances, BENZO WITHDRAWAL, and ANXIETY, among many other causes. I had lots of twitching for weeks/months with my anxiety and benzo withdrawal. Some people also suffer from benign fasciculation syndrome, where various muscles, including the tongue, twitch without any pathological cause. Here are a couple of important points to remember: 1. When ALS experts diagnose ALS, they do not look for twitching. They look for clinical weakness. That is because twitching almost always is preceded by clinical weakness. Why? Because the muscle only starts twitching in ALS when the motor nerves that activate that muscle start dying, so by the point that you have twitching in ALS, you already have significant weakness with those muscles. (And to be clear, by clinical weakness, I mean an inability/failure to do something; not a weak feeling or sensation. ALS patients will tell you that the muscle feels fine; it just doesn't work. By contrast, anxiety sufferers often feel weak, but if push comes to shove, they can move the muscle). Note, most ALS patients don't even feel or notice their fasciculations; they usually go to the dr for weakness, and the dr then notices the fasciculations. 2. When it comes to the tongue, clinical weakness manifests in two main ways: (a) slurred speech and (b) sometimes difficulty swallowing. For most ALS patients, slurred speech starts well before any swallowing difficulties though. The muscles in your tongue become clinically weak, so you start slurring your speech. To be clear, the type of slurring I refer to here is NOT the occasional lisp, fumbled word, or statter: it is continuous, very obvious to others, and others may ask you if you are drunk. If you can speak fine with others understanding you, you do not have ALS. In sum, before you would have twitching in the tongue caused by ALS, you almost certainly would have dramatic speech deficits. 3. This may sound simplistic, but everyone's tongue twitches when you stick it out. That is why neurologists look at your tongue at rest in your mouth. And even at rest, there will be little twitches, because it is extremely difficult to hold your tongue entirely still. My advice: STOP LOOKING AT YOUR TONGUE. I used to do this, and it would drive me crazy. If your speech is fine, you don't need to worry about perceived tongue twitches. My last little bit of advice: Stop Googling. What I have described above is the general concensus among ALS experts out there. On the Internet, you can always find some story about someone who allegedly had ALS symptoms present in a different way. The fact is, we do not know if the person's account is factually true or complete. Moreover, even assuming that the person reported her story 100% accurately, and she is a complete outlier, you are now positing that you have an extremely rare onset of an already extremely rare disease. Extremely unlikely. So, stick with the medical facts. If you are really concerned, go see your dr and have them perform a general neurological clinical exam. The clinical exam is the gold standard for ALS, and an EMG is only used if something abnormal shows up on the clinical. If you have a clean clinical exam, you can rest assured. Bottom line: I don't think you have ALS; I think you have ALS-related anxiety. Work on getting help with your benzo withdrawal and polyneuropathy, but don't waste your life worrying about ALS.
  3. 3 points
    ALS progresses at different rates for different people. That's why typical survival rate is 2-5yrs from diagnosis, with some passing away after a few months and others like Stephen Hawking still alive decades later. BUT, there are very few plateaus in ALS. There is almost always progression; even in Hawking's case, which is an extreme outlier. 6 months with no progression of symptoms is EXTREMELY UNLIKELY to be ALS. And that assumes that you even have any presenting symptoms of ALS. Liv, in your case, I don't think you have any true presenting symptoms of ALS, as we have discussed many times before. The symptoms you describe are at best generic/non-diagnostic, and in many instances not even symptoms of ALS at all. So even assuming for the moment that your generic/non-diagnostic symptoms could have been ALS, you almost certainly would have had progression by now.
  4. 3 points
    My therapist tells me that the what if's and the oh no's and the why's are your thoughts going to scary places.. and you have to shut the thoughts down Bec its only a thought a remember thoughts aren't real. Your thoughts are not Drs. It's your mind scaring you. I never heard of anxiety or anxiety symptoms until I had twitches. Let me tell.you something that might help. My first visit to my therapist she had me fill.out a questionnaire and one was current anxiety symptoms and I was to check what I had.. examples: headaches, upset stomach, weight loss, muscle tension, weakness, fatigue, twitching, tingling, burning. I almost started crying Bec it's real, these symptoms are real!!!!!!! This is real. Anxiety can cause you to hold in tension causing these symptoms. When your friend told.you about ALS that one night you got scared, held in your adrenaline, googled had more held in adrenaline it goes to your muscles.. causing twitches causing you to feel weak and it's just a vicious cycle.
  5. 3 points
    Hi.. I haven't seen you on the forum before. Sorry you had to join this group I'm an 8mth ALS worrier. I'm getting better and better, And I can tell you that those forums are not filled with crucial info they are filled with anxious scared people going and posting symptoms and few if any real ALS suffers or ALS loved once saying a brief reason why they don't have ALS.. you will never be satisfied with what the forum gives you.. it's Bec the more you read the more your mind turns and twists the information.. I posted on the als forum.. several times and even though they all said I didn't have ALS it was the way they worded it that never made me feel better... But that was mind saying that.. I got band from posting on the forum that's how bad it got for me. I kept going back though.. reading others posts.. it's the exact same as googling it absolutely will not help. The only thing that will help is going to a PCP and getting a quick Nero exam and moving on. Staying on the ALS forum is getting you no where but deeper and deeper in the ALS rabbit hole. I wish y'all would take mine and Doxie Moxie's advise. If you have been researching like we all did, you know that a strange feeling is not ALS it's completely the opposite. If you aren't having slurred speech please move on. The trouble swallowing is anxiety and your complete focus on it. Swallowing is a non involuntary action but when you start over thinking it, it will.change. I did that with swallowing, with walking, with writing.. it can drive you mad. I hate to see y'all go through what many many of us on the forum has gone through. Y'all don't have ALS. We all have ALS anxiety there is a huge difference. You have to move forward.. or you can go in a deep dark place. I missed 6-7mths of my life worrying and worrying... I was not mentally present for Valentine's day, Easter, my kids birthdays or dance recitals. I was in ALS mode non stop. You have to starve the thoughts you have to stop googling, researching, analyzing, testing and just tell your mind no.. ALS no, anxiety yes. a moderator on the forum who had ALS fears taught me that saying and it might have saved my sanity. I said it over and over when my mind tried to Scare me. It helps.. anything will help except staying where you are.
  6. 3 points
    Hehe. Well, apart from my crooked tongue. That quivers 24/7. I was kinda being a bit flippant earlier, because really my awareness of my speech never goes these days. I am constantly tripping up and mispronouncing things and slurring. Sometimes I just worry less about it than at other times. (Incidentally, Doxie, the guy who posted on the ALS boards about his tongue (the one that set me off a week or so ago), he had a "perfect" EMG today and was told by his neuro to never think of ALS again.)
  7. 3 points
    Jay, Your story and symptoms are extremely similar to mine in so many ways. I've always had OCD at a low level, but never worried about my health. My HA also started with fear of MS, because I started experiencing numbness, tingling, and burning sensations. ALS wasn't even on my radar, until one day I was Googling MS stuff, and there was a link to a website about ALS. I clicked on it...and months of misery started. The twitches started and I went into a spiral where my whole life was consumed by fear of ALS. Like you, I was constantly testing the strength of my feet, toes, legs, arms, hands, fingers, etc. Constantly monitoring my twitches, which only got worse with the anxiety. Looking at my tongue numerous times in the mirror in the day. Reading out aloud and saying tongue twisters. Worried bc my swallowing felt labored and my throat really tight. Ultimately, I am happy to tell you that none of this was due to ALS. Anxiety was and is the culprit. Yes, you are correct about the slurring -- it would be constant and noticeable to others. It is not mere mispronunciation of the occasional word, and wouldn't come and go. I can tell you, the more you focus and hyperanalyze your speech and swallowing, the more perceived "problems" you will notice, because your mind is consciously analyzing an automatic activity, and essentially tripping you up. When you have true speech and swallowing difficulties, you would know. If the food goes down and you communicate fine with others, even if it "feels" off, you do not have bulbar onset ALS. So, what worked for me? As an initial matter, I have to tell you that I do not consider myself completely cured. It is a continuing process with the occasional setbacks, but I feel so much better and the fears no longer run my life. There is no easy quick cure, and different things help different people, but here are a few things that really helped me along the journey: 1. Getting a good, thorough neurological clinical exam for medical reassurance. I got one through my GP and one with a neurologist, but a good GP is really all that is necessary to perform a clinical neuro evaluation. They will test your strength, reflexes, etc. If you had ALS, something abnormal will show up on the exam. If it is clean, you do not have ALS, and you don't need further expensive and invasive electrodiagnostic testing, because there is a general concensus among ALS experts that the clinical exam is the gold standard, and if no abnormalities are shown, no EMG is needed. In fact, in my case, my neuro absolutely refused to order an EMG, because she said it was entirely unnecessary. Despite that, you will see that lots of ALS worriers insist on it, and some of their doctors give in, but I would really advise you to trust your dr. If you have a clean exam, accept the reassurance and move on. Yes, the anxiety will make you question whether the exam was thorough enough, missed anything, etc., but you just have to let those thoughts go. Our HA will never be completely satisfied with any test or procedure, so you just have to expect the doubt, and then let it go. 2. AVOID Googling symptoms, diseases, and especially ALS forums. I have spent countless hours looking at these, and although it sometimes provided temporary reassurance, it actually caused me much more anxiety in the long run. I've joked with another member of this forum that we are essentially like alcoholics, only ALSAHOLICS, so there is no middle ground or moderation. We just need to stay away from Google completely. Moreover, the Internet is filled with inaccurate information about ALS (and lots of other diseases). Stories often come with incomplete facts and may draw unwarranted conclusions. They often tend to focus on extreme outlier cases and exceptions to exceptions. Just stay away. Like I said before, I am a very evidence-based person, so I ended up reading all the medical journals/articles. I don't recommend doing that either, and you don't need to, bc myself and others on this forum have made numerous posts regarding ALS, and you can pretty much read what you need to know on here without venturing to the rest of the Internet. Or even better, ask your dr, rather than strangers on the Internet 3. Medication. I did seek the help of a psychiatrist and have been on an SSRI antidepressant (Paxil) now for several months. It does not take away the thoughts or symptoms completely, but it does put you in a calmer and better place to deal with your HA. Be warned: SSRIs tend to make your anxiety worse the first few weeks until your body gets used to the meds. They are not fully effective until at least 6 weeks of use, after which things tend to get much better. There are several SSRI drugs, and some work better for different people, so if the first one you try does not work well, your dr may switch you to a different one. This is just general info, and be sure to discuss all this with your dr. 4. Therapy. I also started seeing a therapist doing CBT (cognitive behavioral therapy). This talk therapy has been very helpful and I highly recommend it. It's important to click with your therapist, so if you don't like the first one you try, try another. 5. Practicing acceptance. Another member on here, Mark, really helped me a lot with this so I recommend reading some of his posts. Basically, it is all about not fighting the anxiety, because the more you fight it, the more it fights back with intensity, and it is a battle you can only lose. Instead, accept the thoughts, symptoms, twitches, etc., recognize them, but don't react to them, and then slowly move your mind onto something else. I sometimes used to talk to them, saying, hi pinkie twitch/tingling arm/burning foot, it's you again, ok whatever, have a nice day, then move on. It takes a LOT of practice, and don't expect instant results, but it really works. 6. Exercise, fresh air, sunlight. VERY IMPORTANT. This has made a huge difference for me, so try to get as much cardio as you can. A little bit of strength resistance training is good too. I also like swimming and yoga, but really any form of exercise you like is helpful. 7. Enjoyable activities. Read a good book, take a warm bath with Epsom salts (sometimes helps to relax and calm the twitches, etc.), etc. I hope this has been helpful. Above all, you need to have some courage, realize that HA is a chronic long-term issue to address, but also know that it can be managed and get so much better. I thought it never would, but it did. Hang in there. Best wishes.
  8. 3 points
    Hi Jay, Welcome to the club of ALS worriers. There is a lot of misinformation about ALS on the Internet, so please stop Googling. Because I'm a very evidence-based person, I've read all the major medical articles I could get a hold of, and while I am not a medical expert, I know about as much about it as a layperson can. I don't suggest that you should do this at all; I merely mention it, because your symptoms really do not match ALS at all. I and others have written a lot about ALS on this forum, so please feel free to read those posts and ask more questions if you like. In short, as you have surmised, ALS does not present with body wide twitching. That type of twitching can be caused by anxiety, BFS, and host of other more benign conditions. The twitching found in ALS is caused when the motor nerves that tell the muscle to contract die, causing the muscle to start twitching. It is accompanied by profound weakness of the muscle; not a feeling of weakness, but a clinical weakness involving failure that you would notice. In most cases, the weakness precedes the twitching, because by the time the muscle starts twitching, the nerve is already well into the process of dying. That's why you hear people say: ALS is a disease of failing, not feeling. Your finger, foot, leg, etc. doesn't feel weird; it just fails. You cannot move it, lift it, use it, etc. So unless you have clinical weakness interfering with your daily activities, I wouldn't worry about the twitching being related to ALS. STOP TESTING FOR WEAKNESS: again, weakness caused by ALS is not subtle; it will be obvious and you don't need to go looking for it with all sorts of crazy strength tests. Now for the swallowing issue: the way you describe your concerns, it doesn't sound like ALS at all. Bulbar onset (which is the most rare onset of ALS btw) almost always starts with speech difficulties first, because the tongue becomes weak and you start to slur. I'm not referring to the occasional lisp or stutter here; once it starts, it is constant, you will sound drunk, and others will notice. If you are communicating fine with others, you are not slurring and you do not have ALS. Swallowing becomes an issue because the tongue has difficulty moving the food towards the throat. Your swallowing issues sound like they are caused by either GERD or anxiety. Swallowing is something we do largely without thinking, and when you become obsessed with it, and overanalyze/overthink it, you interfere with a natural activity and swallowing starts to feel labored and difficult. Your throat can also become tight -- look up the term crichopharyngeal spasm. Lots of anxiety sufferers get that. Finally, coughing and throat clearing are such generic symptoms and mean nothing; if those were indicative of ALS, half the world would have it. Yours is likely caused by GERD and anxiety. Final bit of advice: go to your PCP and request a basic neuro evaluation. I don't suggest this bc I think you have ALS, but it might be useful reassurance to get medically cleared. If a standard clinical neuro exam is normal, you can rest assured you do not have ALS. The clinical is the gold standard used by ALS experts, and EMG testing is only used if abnormalities show up on the clinical. Once you are clear, trust your dr and MOVE ON. I was stuck in ALS anxiety for months, and it is terrible. You don't want to waste away your life over this. Good luck and best wishes; you can do it!
  9. 2 points
    Jay.E I'm so so glad you went to the neurologist and got the all clear to put your worries away. I was starting to do the same as you... Shortly after my appt I glanced at my foot while I was walking and I thought noooooooo!!!! Lol so I stopped and told myself NO ! And just kept walking.. it really shows how all this is mind related, thinking related. When you feel yourself looking at your thump just remember you don't have to or need to anymore. Feels freeing doesn't it! You inspired me to just go to the Dr and ask all the questions my mind comes up with. I tried to not seek reassurance but I had to. I feel better than I have in months. Thank you Jay!!! I hate that we had to meet under these circumstances lol but so glad I did. Hugs!!!
  10. 2 points
    I twitched (fasciculation) for 15 years, sometimes in in different places non stop for days on end, other times i the same spot for what seemed like weeks. After the initial year Burning sensations, buzzing, tingling joined the party. This was before google, so dusty old books in my local library were my only source of information, and any mention of fasciculations, was proceeded with the words Motor Neurone disease or MS. This fear was intensified by numerous GPs having no idea what was wrong and dismissing it as if it was all in my head. A neurologist after 4 years diagnosed me with Benign Fasciculation syndrome. Although by this time my body was in such a heightened state of anxiety, that new and weird symptoms were appearing on a weekly basis. The truth is, you like me are a twitcher, and until you embrace that fact, twitching will always consume you fuelling itself with your fear. They are annoying i know, but they are harmless, and when you except them they will lose their energy and one day you will realise they are gone. I understand its easy to say this, than to actually relax and ignore it, but trust me if you continue to fuel them, they will continue as will the energy you put into your anxiety. Good luck, happy twitching.
  11. 2 points
    Well I felt like I needed to see my PCP about my als fears. I haven't talked to her about it since March. I told her about how my anxiety always leads me back to als. I showed her my foot and toe that I literally flipped over two weeks ago. I thought I had atrophy. She said no, absolutely not. She said I can write als on a paper, put it in a box and bury it.. it's done over and put it out of your mind. Since I live in TX and my grass is hard as a rock I plan on writing it on paper and flushing it down, and out of my thought process!!!!!!!!!!!! It goes to show yet AGAIN how we can not self diagnose, we always go to worse case senerios. I want to thank everyone who helped me through my darkest days. Maybe tonight anyone who reads this who has other fears that are irrational, worst case senerio self disgnoses will join me by writing it down and flushing it away for good... Love and hugs yall!
  12. 2 points
    "Lower end of the range" - so it's within the lab's reference range? If so, don't even think about it. Anything in the reference range is normal. In fact, numbers can also fall outside of the reference range occasionally, and there is no cause for concern. Trust your doc. You're fine.
  13. 2 points
    Hi Jay- As a fellow Health Anxiety sufferer, I just wanted to send you thoughts of support. ALS is a very common fear among many of us. I spent several months in the "ALS rabbit hole" a year ago. It was triggered by hearing of a few aquaintances and a co-worker being diagnosed. I became (unconsiously) obsessed over any little symptom that could point to early ALS. Mostly Weakness and cramping in my left hand/arm. I REALLY felt these symptoms. I went to the neurologist and had all the nerve tests done eventually. Like I said, it took over my life for about two months. I feel like there is no easy way out of these episodes... only getting through them. Daily exhausting fighting between my fear and my logical brain, eventually I must have just tired of it all. It led to eventual depression as well. I also relied on klonopin for my panic episodes and extreme anxiety, and zoloft to improve my mood. I was (and still am) seeing a therapist, psychiatrist, and primary care doc who are all aware of my issues. I'm so sorry you are going through this. I know first hand how scary and emotionally exhausting it is. We really do "create" symptoms from the normal variations in how our body works. It will get better in time. Your body needs to recover from the anxiety as well. I myself have moved onto another scary health anxiety episode... so I am going through what you are going through currently, just with a different disease. Hang in there.
  14. 2 points
    I don't really trust my husband !! He loves my daughter like crazy, yes, but HA has been a sore spot between us. He is just knee jerk about any fear I express now (although he is ALWAYS right about everything I've panicked about!!) And, he has NO worry whatsoever. None. Fire ants could be eating his face and he would be like, it'll be alright!!! I am still really not doing well. I so wish I had investigated her nose better than I did. NOw, I am paying the price of that! It's the uncertainty of that that is the source of anguish right now!
  15. 2 points
    You have everything going for you!!!!! I was rushed into a CT scan once. They are very clear when they think they are going to find something. Scheduling at your leisure means very low suspicion. You are going to get good news.
  16. 2 points
    I'm sorry you are having such a hard time. It's hard being an introvert sometimes, isn't it? I'm an introvert too and have often felt like I didn't have any real friends or no one cared about me. When you are struggling with depression, it's easy to feel like everyone has deserted you and no one is really your friend. I can't say for sure what anyone's true feelings are, but I can encourage you that you do matter. Don't give up. Don't stop trying. Don't quit reaching out to people, be it your friend group or anyone else. As much as it often seems like the right decision, cutting yourself off often doesn't help too much. Even though it's hard now, there are people that care about you, they just may not always do a good job of showing it. And let me tell you, you do impact people, even in the very little things. When you ask someone how their day is, they know someone cares about them. When you talk with someone about their interests and hobbies, they know someone is showing an interest in them. Simply being you means you have an impact on the people you come into contact with. Heck, even smiling at someone you don't know can be huge. Giving someone a compliment could even refute the negative thoughts they were having about themselves. Often, we don't see the impact of the difference we make in people's lives, but I can tell you that it's there. Don't give up. Keep going, keep pushing knowing you are making a different every single day.
  17. 2 points
    I know exactly how you feel. I feel like I'll never get back to the "before" me again That this fear will always be there, ready to raise its ugly head, because now I know about this dreadful disease and I can't be ignorant of it ever again. But I also know this is just another aspect of the black-or-white, catastrophic thinking, and that we WILL get past this. I think of other fears I've had in this past that I barely give thought to these days (not that they were ever as bad as this, however). I think with enough time, we will move on. We will just get so sick of feeling like this. The fear will fade into the background, and we will resume out lives. At least, this is what I hope x
  18. 2 points
    I think you are referring to the historic cable cars? There are 3 main lines that run through the city. Honestly, it is mostly used by the tourists, because they are not very efficient at getting you through the city, but they are lovely. You should definitely ride one when they visit. I love SF. So many colorful neighborhoods to explore, all with different characters.
  19. 2 points
    Every time I think of San Fransisco, I think of those iconic images featured in movies. Especially that image of the tramway running through the city, and those lovely little homes peppered throughout the street. Lool, I'm sure there is a lot more to the city, but if I ever visit SF, I must take a picture of that tramway with me in it.
  20. 2 points
    LOL I would not describe SF as the quintessential California experience with palm trees and perpetual sunshine either. That's more a SoCal thing. But we do have very temperate weather (seldom very hot, seldom very cold). We get quite a bit more sun on the Bay side (I live in the Marina district) compared to areas of the city right on the Pacific (like the Sunset).
  21. 2 points
    If this helps you at all, I used to wake up from naps with feelings of utter dread and fear too. Sometimes for no reason, i.e., I wasn't even dreaming or thinking about ALS. The fork thing SO happened to me as well; it felt weird to hold it and my hand would even tremble a bit. I would also hold a glass and feel that I was going to drop it any minute, but never actually did. This all went away for me, which wouldn't be the case with ALS. It just shows how powerful the mind and anxiety can be.
  22. 2 points
    Yes, my anxiety spiked majorly when I stopped going to the ALS forum and stopped Googling. It was like a withdrawal syndrome, with lots of what ifs, fears, thoughts, increased symptoms, etc. But it is a temporary spike and will get better in the long run. It's really like any drug withdrawal. Keep it up, and hang in there.
  23. 2 points
    Thanks, guys. I think my anxiety is spiking because I'm not allowing myself any checking behaviour. I have a big fat case of the WHAT IFS?
  24. 2 points
    That's just your mind telling you things that aren't true. Like my profile pic says "rule your mind or it will rule you" my therapist basically says the same.. she absolutely says that HA is a thinking disorder and you HAVE to change the way you think. Your mind is twisting the facts.. my fear was only bulbar for a short time but what I read is, speech is effected first... And others notice it. I remember reading a story about a woman that worked at the post office in Rockport tx... She said that customers would ask her if she was ok or if she was drunk and that's when she knew something was wrong.. there are many many stories just like that.. plus on the stickies it says that plain and simple. You have to get control over your thoughts and mind.. tell it NO! Also Doxie was right on the money when she said googling and the ALS forum is like a drug... You will feel lost with out it, your going to be tempted to go there.. just don't whatever you do.. it's a step backward.. keep moving forward.
  25. 2 points
    Hot Epsom salt baths and walking helped me. I also read a lot in the bath. Get a good suspenseful book it helps keep your mind from wondering. Light some candles and just go to another place. And yes Tylenol. Glad you didn't Google or go to the forum. Pain as you know is not a symptom. I had this too I think it's just stress and tension build up.
  26. 2 points
    I agree.. except I don't think you have ALS. You have been feeding the thoughts and letting your mind have control.for months and months. It took me months to get better... I just had to stop, I had to make myself get better. Living in fear is no way to live. We have a thinking disorder that's really what health anxiety is. I did like you in the beginning I would wake up and say I'm not going to Google and I'm not going to the forum then I would start worrying then I would think Google and the forum would help even though they never did.. i would scare myself silly all day and before I knew it I had been googling for hours on end with nothing but pure fear to show for it. My husband told me one day he was worried I couldn't care for the kids and that was a kick in the butt to make myself get better.. and he told me that if he felt like I had ALS he would have my butt to every neuro in the u.s. and y'all have to realize that too... Your husband, boyfriend, bff, mom, sister etc would tell you something is wrong let's go to the Dr.. but they aren't for a reason Bec nothing is wrong. That one helped me a lot.
  27. 2 points
    Hello liv07, Like you I'm obsessed with my tongue (speech/swallowing). I've had a bad spell of anxiety last night and pretty much all of today. Talking to you, Doxie Moxie, and Holls helped me a great deal. Our conversations have helped me put things into perspective. I'm feeling a lot better than I did a few hours ago. The symptoms are not gone but I'm not about to burst into tears anymore. Remembering these few things helped me reason with myself: 1) As per one of the stickies on the ALS forums (but also reiterated by Doxie Moxie), in the case of ALS symptoms don't come and go. If one experiences slurred speech it is not going to simply go away to reappear later, only to disappear anew. In the case of anxiety however, because it is essentially psychosomatic it will vary depending on how anxious you are about it or how hyper vigilant you are. 2) The sensory symptoms we are experiencing (burning, tingling, numb, heavy tongue) is not associated with this disease. In fact, come to think of it everyone on the ALS forums mentioned that it was only when they started experiencing slurred speech that they sought help. They did so because of the slurred speech or the constant chocking on liquids, not because their tongue felt odd. 3) People are likely to associate all sorts of symptoms they've experienced before their diagnosis to ALS. Unless these are symptoms associated with the disease in question, chances are these symptoms were in fact caused by something else but was probably not diagnosed or maybe the person didn't even seek medical attention for it. However, after a diagnosis people tend to see everything they've experienced as probably a sign of the disease. This is why we should really stay off these forums. Anecdotal evidence is not scientific evidence, and in our case it will only lead to fuelling the fire of this fear. We are in it for the long haul I'm afraid, but at least we've got this forum to find the necessary support.
  28. 2 points
    I almost fainted before my appt. I'm just in a better place now. Trust me I was a hot mess lol. But after the appt I felt like I could fly.. you're fine Liv.. hugs, tight hugs. I know what you are going through. Getting off Google and the forum is a huge start in getting better. I never didn't he emg so I still have those days of doubts with my foot but I know I'm fine it's just that mind of mine scaring me.
  29. 2 points
    OK, I'm blocking it again. I promise not to go there
  30. 2 points
    Liv you have to stay off the ALS boards. For goodness sake why are going there?? You know and I know they do nothing but add more thoughts to your head. You have to get off or you will never get better.. I'm sorry but I turned a huge corner when I stopped going there.
  31. 2 points
    And the symptoms we do have could equally be anxiety-related or else so vague and nonspecific as to be useless diagnostically.
  32. 2 points
    You are most welcome. Just repaying the help so many others offered me. Like I said, forget about bald spots or sensory symptoms on your tongue. Those just aren't ALS symtoms. There is no real tongue strength test. If your speech is fine, your tongue is fine. On the ALS forum, they sometimes told people that if they can move their tongues up and down, and from side to side rapidly, then there is no problem. I think that is absolutely correct, but for me that resulted in hours of tongue movements, making it feel quite exhausted and sore. So I don't really advocate doing a ton of that. How to disconnect? It's a hard thing to do. I struggled. I think ultimately you have to stop the testing, and trust that if your speech is normal, you're fine. And trust that you will notice any speech deficits if they arise, because they will be obvious. Then, whenever your thoughts go there, or you are tempted to test/inspect your tongue, acknowledge that it's the HA, and then gently move your thoughts on to something else. You cannot fight HA; you can acknowledge its existence, but not react to it, and then gently move on. Takes lots of practice.
  33. 2 points
    Inside, and almost exclusively nervous system. I figure the outside can take care of itself, it just doesn't work me up the way neurological stuff does.
  34. 2 points
    It's really hard when someone you know dies from cancer, from a personal standpoint and from an OMG hypochondria standpoint. My 13 year old son's friend's mom died from cancer, and it happened very fast, and my mind races to her all the time, even though I didn't even know her well. The way you described your friend's cancer applies to A LOT of cancers, unfortunately. THat is what my BFF Dr. Google tells me. I used to think breast cancer was like the worst fate on earth...but...IDK. Having a couple of legit cancer scares has made me see, NOPE. Cancer is not always easy to detect, and you can get it absolutely ANYWHERE, like in your sweat glands even. It doesn't always show up as lumps but can just be thickening! My GOd! Your friend had this horrible thing happen, but this doesn't change the situation from yesterday. Every single one of us on earth is in exactly the same boat, in that some sneaky can be going on out of our view and there's a chance we'll miss it. I think the best thing you can do is be proactive about the IBS. Ask if you should get follow up tests every couple of years, if a doctor doesn't suggest monitoring. I have some weird things in my body....permanently enlarged nodes in my armpit, a urethral diverticulum. All have checked out as benign, but they are still there. It's been a few years, and I have been a little lax, but now that I am back in HA mode, I am definitely going to ask about follow up screening at my next annual. THe other thing that helps is just to focus on symptoms improving. UNfortunately, cancer can move slowly, so this isn't foolproof, but I have to imagine anyone's situation would worsen progressively if he or she really had stage iv cancer. Your testing is all going in the opposite direction to worsening, so that is a great sign. Plus, blood work really has little or nothing to do with cancer. It's not how doctors test for most cancers, so I don't think *we" should focus on it either.
  35. 2 points
    I know this freaked a lot of us out but let's all try NOT to Google. The chances of any of us having this is very slim.
  36. 2 points
    Not much has changed over time. We notice these things more when anxious, that's just how anxiety works. We become fixated on death and illness, particularly in younger groups of people, and so it stands out to the anxious mind. We are also more aware as we get older because we realize that increasing age brings increased risk of health problems. When I was a kid, I think only recall one case of cancer - and it was my aunt. I thought pretty much everyone else lived to be 85-90 and died simply of natural causes, or sometimes a little younger due to car accidents, murder, etc. As I got older, I realized that simply isn't true, unfortunately. We must learn to accept it. Instead of dwelling on it, we just need to enjoy life and do what we can, within reason, to try and ensure we live a long and healthy life. By "within reason" I mean not going to the extreme, because yes, even the healthiest people with the greatest habits can become seriously and fatally ill. But we should aim to eat better, exercise regularly, don't do drugs, don't smoke, don't drink often, etc. And, if nature cooperates, we can enjoy a long life.
  37. 2 points
    Hi Jay I'm still very much in it. It's a day to day struggle. Today my thumb has decided to start twitching, which has kind of set me off again, even though I know it's a common place to twitch. It feels like every time I start to calm down, my anxiety says, oh hell no, and finds something new to latch on to. It's a process for sure, two steps forward, one step back
  38. 2 points
    Just chipping in as I can relate to this. I struggle with neck pain and tingling in my face and have been back and forth doctors the last few months trying to work out whats going on. Currently we all think its down to stress and anxiety. I know when people say "Oh its just anxiety" its kind of insulting when you're experiencing very real physical symptoms, but its good to realise that anxiety causes our body to react in lots of physical ways than then lead to those symptoms. It could well be, if youre already stressed and anxious about your health or in general, your body is reacting to that with tension throughout your muscles (neck, shoulders, jaw etc). This tension can put pressure on nerves, trigger points through your muscles that refer pain over your head. I know the muscles in the back of your neck do this. They refer headaches to the eyes and forehead if they are tense and knotted up. I know this because its something have! the big thick muscle in the from of your neck (SCM) and your jaw muscles can create tinnitus when they are tight too. I know its the hardest thing in the world but try and take a step back and consider that your anxiety may be causing this. By all means see a doctor but try hard not to freak out.
  39. 2 points
    Thank you so much DoxieMoxie, you are an absolute Godsend. Your answer is full of great insight, and it is giving me a lot of hope. I've been so terrified and depressed, constantly googling info on ALS and of course the more I did that, the worse things got. I'm so glad I've found this forum. It is honestly the first place where I've found great feedback and heard from people like yourself who truly understand what I've been going through. I have an appointment coming up with my family Doctor and I'll ask him to do a clinical neuro exam, fingers crossed everything goes smoothly. He already scheduled an EMG at my insistence weeks ago (at the height of my anxiety and depression). Strangely enough that is actually making me somewhat anxious. "What if there is something really wrong?" keeps running through my mind. Hopefully, everything will turn out just fine. I'm in the process of trying to get access to a therapist through my campus. I definitely need to figure out what is triggering all of this in me. I'm slowly coming to terms with the fact that I'll probably always deal with HA and that it will take time to find a way of coping with it. Hearing about your own journey gives me a lot of hope DoxieMoxie. I've been dealing with anxiety (although not as acutely as now) for a couple of years, but I just never realized it before. Hopefully once all the tests are done and I start seeing a therapist, things will at least settle down a little. It is interesting how you've mentioned exercising and getting involved in enjoyable activities. Although I've never been into sports I've always been a very sociable person. However since this bout of anxiety started, I've barely left my home. I've been forcing myself to answer the phone and sound normal to my friends, when deep down I just wanted to cry and I felt like I was drowning. At my mother's insistence (and in order to not arouse her suspicion that there might be something wrong with me) I would go grocery shopping with her. I love books and I'm a huge fan of science fiction, and yet I haven't been able to enjoy either. I've barely worked on my thesis, and couldn't even muster the strength to care about it. That is when I realized there was something really wrong with me and that I probably need help. I just want to go back to living my life again. I never knew how insidious anxiety can be. Thanks again for everything, I can't tell how much this means to me
  40. 2 points
    I agree, one will always find exceptions if one looks for them. It's a dangerous path to tread with HA. The chances of having a rare presentation of a rare onset of an already rare disease are vanishingly low. I need to focus on this fact, not the outlier subjective case studies, reported secondhand.
  41. 2 points
    You and Holls describe quite accurately the fallacy of the "time test." No time period will ever be enough to put your anxiety to rest. In any event, you can hypothetically develop ALS or any other scary disease at any time in your life, so you will just end up looking for symptoms until the day you actually die. I don't mean to be morbid, but we have to be honest with ourselves about it, because just a few seconds of logical thought exposes the nonsense of the "time test." If you can do all the things you normally do, you do not have ALS. You have no doubt read the countless of ALS stories on the Internet. Apart from the rare exception (whose accuracy you have to question in the first place), ALS is not a subtle disease. When you have it, you know it, and you don't need to go looking for it. The affected body part doesn't feel weird or weak; it fails, and it is obvious. If you want extra medical reassurance, there is a test that reliabily rules out ALS: the clinical neurological exam. Now, just like any medical test, it will not tell you that you cannot develop ALS or any other disease a year from now, but it will tell you that you don't have it now. And that's the best any of us can hope for. Living with future uncertainty is what we as anxiety suffers have to learn. But that is treatment for anxiety; not treatment for ALS.
  42. 2 points
    I know what you mean. I really wish I had never Googled or read it before. Despite the ice bucket challenge, ALS was not even on my radar. I was stressing and obsessing about MS (which ironically is a much better fit for my symptoms, although I don't have it ), when I saw some cursory reference to ALS. I thought, what's that, and clicked on it. Months of misery to follow. I'm like Holls describes. The months of complete darkness are over, and I feel so much better. I still have the occasional thoughts/fears that arise, but they are much easier to ignore now. It will get better. The things that REALLY helped me, in no particular order, were: 1. Trusting in my doctors and getting a thorough neurological clinical exam. I'm a very evidence-based type person, so for me this went a long way. 2. Staying completely off ALS websites/forums, etc. 3. Throwing myself into other activities in my life as much as possible. Exercise, friends, books, etc. 4. Medicine/therapy. You will get through this.
  43. 2 points
    UPDATE - THE NURSE CALLED ME AND ALL MY BLOODWORK IS PERFECT! EXCEPT FOR FERRITIN OF 6.... IT SHOULD BE AT LEAST 10.... SO I NEED TO CONTINUE TO TAKE ORAL IRON... OTHER THAN THAT I AM SUPER HEALTHY!!! THANK GOD! AND THANK YOU ALL FOR YOUR SUPPORT!!!!
  44. 2 points
    When I read this I thought I had wrote it, I had to double check this wasn't my post haha. My left side feels different then my right, not numb but less sensitive. Usually it's my arm and leg but today I'm noticing it in my face. I had a ct scan last year and have an upcoming MRI. When I have talked to my doctors they don't seem to be as worried as I am but I have all but convinced myself there's something very wrong. there's a couple things that work for me sometimes, this ones a little odd but I sit and focus really hard on one part of my body (maybe my foot or a finger) and see if I can make it feel abnormal like tingly or heavy or weak. It reminds me how much control I have over my symptoms. When it's cold outside I'll go out for a bit till I'm feeling chilly and that takes my mind off of whatever symptom I'm obsessing about. Or I'll run up and down the stairs a couple times until I feel winded for the same reason. Kind of wacky but anything that stops me from obsessing over one specific thing!
  45. 2 points
    Have others commented on your speech? Can others not understand you well? If not, extremely unlikely to be ALS or anything serious. Slurred speech with ALS is obvious, constant, and people will notice. It sounds like you are very worried about your speech. Speech is usually something we do without thinking about it. Once you start obsessing over it, hyperanalyzing it, etc., you start interfering with what is normally an automatic function, and this can cause speech issues like you note. Your brain is essentially tripping itself up. I have experienced this myself when I was in the midst of my ALS fears. If you are really worried about it, go see your GP for reassurance, but I don't think you have anything like ALS. The way you describe your symptoms simply does not match up with it.
  46. 1 point
    I’m sorry that you are faced with this health issue. It is difficult to cope when there is an unknown. I believe we do the best we can when faced with something that is not routine. Take time for yourself. If movies distract you from thinking the worst, then do it. If there are any other hobbies you enjoy, do it. Nobody can put themselves in your position. This is your life and you have to take each day as it comes. Would it be helpful to speak to a counselor? Sometimes an experienced perspective is just what we need to find hope in a situation that overwhelms us. Do your best to keep the negativity from overpowering your daily activities. Try and surround yourself with the things that make you feel good and that make you happy. Give yourself permission to take a sabbatical from life if you need it. How about a few massage sessions or a few courses in relaxation? This can help when the mind and body just won’t slow down. I do pray for positive results and for many blessings!!
  47. 1 point
    I'm so sorry that you are going through that. its horrible to be scared all the time. just in the last week I've had colon cancer, aneurism, brain cancer, mouth cancer, diabetes, and I'm currently in the middle of a heart attack. Funny thing is I'm healthy as a horse. hope you feel better soon. much love.
  48. 1 point
  49. 1 point
    I've thought about recording myself too, but so far have just stuck with tongue twisters and reading aloud. Cognitive distortion plays a big part in HA, as you've just proven. My speech feels forced too. As though if I don't make an extra effort to enunciate with my uncooperative, clumsy-feeling tongue, the words will come out slurred. I think I am making an effort to pronounce every sound, when in natural speech we tend to elide.
  50. 1 point
    Sounds circumstantial to me. Related to your anxiety levels or posture. Forget about rabies. You're barking up the wrong tree there.