Welcome! Introducing Nettie and Her Twitches

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exploringexistence

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I'm new here, just joined a few days ago. My name is Antoinetta by the way, but feel free to call me Nettie as most people do. I did post a question on the question thread and explained my symptoms there but I'm 25 and I have been twitching for nearly 3 weeks now (although I did have a bout of twitching last September after being put on Advair). I saw my GP and she examined me, did strength tests and checked my reflexes. She said everything was great and there was no need to see a neuro. She told me I did not have a MND. Yet I just can't let this go. I am physically ill right now and convinced that I definitely have ***. The people who replied to me on the other thread were very comforting and nice. I also read a lot of other posts here and I did find it reassuring that so many people who post here come back after seeing doctors and say they are fine. Yet I'm convinced I will be the one exception. I keep thinking that maybe if I see the neuro and he says I don't have it, I will finally be happy again. Then I think, what are you thinking? He's going to tell you that you have it and your life is never going to be the same. I just don't know what to do.My twitching was more widespread at first. It started in the right big toe and then i noticed I twitched everywhere. Then it seemed largely confined to my right leg, with a few odd twitches popping up here and there. This made me think that I most definitely have *** if it's confined to a certain area and it supposedly can spread up a leg. Now the twitches seem confined to my right foot only. It jumps from the big toe, to the little toe, to the top of the foot or the instep. The twitches seem lighter too. This has me in a panic. Also, last night, I was minding my own business, walking down the hall and my anke just felt like rubber for a second and I sort of dipped. Now it was the left leg, not the right, but this scares me to death that maybe the weakness is indeed starting. I did so many tests on my leg after that. I hopped up and down on it for like a full minute. Then I did the other leg for good measure. So then I wake up this morning and my right leg feels so tired so now I feel like both legs must be getting weak. I also notice my jaw and tongue actually feel tired. I don't think I am putting it in my mind anymore. I notice after a few seconds of chewing, they seem tired. It sort of feels like there could be a dull ache but I'm not sure. I know pain is not a symptom of *** but I'm not even sure if they hurt or they are just weak. Also it feels like my mouth is extra moist and there is an excess of saliva. I just went on a forum too that discusses side effects of medicine to check something too and there is a link on the side to an *** forum so naturally I take that as a bad sign too. I am freaking out about this. I didn't even want to eat this morning but I only ate to check if I'm still able to do it as a test. I do suffer from some pretty bad anxiety and OCD but I keep thinking maybe this is for real and I am going to be the one person who developed twitches before weakness. I'm just not sure what to think anymore :(
 
Hi Nettie!Please try not to worry! You sound like the rest of us. I have suffered for many years with quite bad anxiety, (health anxiety, I should say!). I have been twitching for 5 1/2 months almost and at first it can really scare the daylights out of you. Your self testing will make you sore, I know I have done that too!Somedays I have perceived weakness, that is it is hard to hold my arms up to hang washing, shampoo etc. But this is not clinical weakness! The best advice I can offer you is dont GOOGLE your symptoms. Take care Nettie!Warm regardsSandra
 
Thanks for the response Sandra. I actually made the mistake of googling my symptoms once the twitching started and that sent me over the edge. I am trying to avoid those sites now as much as I can. Ughhh I just wish things could be different. I keep going back to when I went to my GP and she checked the reflex on my left arm and I got this strange sort of buzz through my arm. I'm convinced I should have mentioned it because it surely must be a bad sign. I'm a bit unclear on clinical weakness I guess vs. the other kind. Right now my arm is slightly tired from typing now too and I feel even worse. I know there are some reasons why it might be tired, yet all I can think is that it points to one thing.
 
Hi Nettie!Perceived weakness is part of this BFS thing! I have trouble typing too sometimes, my arms get sore easily, shampooing my hair, holding up my arms to hang out the washing. But I can still do these things! Nettie, you will see that so many of us have the weak feelings in our arms and legs that come and go. It is NOT sinister just part of the whole package. CLINICAL weakness to me is not being able to turn a key in a lock, hold a pen etc! You are fine Nettie!Warm regardsSandra
 
Nettie, Hey sweety. 28 year old female here pregnant with my first child, Amberlyn. I am not even supposed to be on this site as I promised my doctors and my psychologist but it is really hard to stay away from. For some reason. IT IS INCREDIBLY odd that if you look @ EVERYONES thread...nearly ALL of us have ANXIETY, OCD, and hypochondria (I MYSELF INCLUDED). I think that is the BIGGEST ROLE of this BFS thing. ANYHOW, I had my first bout of twitching a year or so ago when I started some lexapro, related or not, who knows? but anyhow, they went away. A month and half ago it started up again. Look @ my threads i freaked and freaked. I saw 2 doctors, well mentioned it to my obgyn, then my m.d/psychiatrist. I finally decided to go to a really good Doctor I knew that would do a good exam. So I did. I went yesterday. He checked my strength etc. All good! Nettie, I asked him what clinical weakness was..as EVERYONE has said on this site....they are right! It isn't...ohhh my legs feel tired, rubbery, watery, like noodles etc. Its "OH I CANT GET UP BECAUSE MY LEG IS NOT WORKING". It's "I cant lift my pen". "I can't turn the key to the door"...this is CLINICAL! Percieved is what WE WILL is weak. Not what the docs see. Net, You are on the other side of *** age wise and so am I and so are TONS of people on this site. We can't all be seeing nutty doctors that say were FINE but were really NOT! Ya know girl? We all think were gonna be the ONE EXCEPTION! I promise I do too, but when I sit back and think rationally, I really should just worry about buckling my seat belt and making it from point a to point b w/out getting into a auto accident..(thats rational). *** is relentless it isn't gradual... Remember that..and *** is NOT a Disease of TWITCHING it is a DISEASE of WEAKNESS! Twitching w/ weakness and Atrohpy just seems to wrap up the fact that someone "may" have ***. My doc reminded me yesterday when I Said "Doc, Im scared Im twitching and I googled on web md and found scary diseases", he never mentioned *** and I said, ummmm Doc Im scared of *** he said "thats not a twitching disease, its a wasting and weakness disease...", Hmmmm how many times have I heard that?Anyhow, Im rambling but I just want you to live your life Nettie, I've missed out on mine for 2 months now and NO MORE AM I ALLOWING THAT!!!! With Love, Lovely :sick:
 
Nettie: I am so sorry that you are suffering with the fear of MND. While your physican might be apt to miss BFS/BCFS as a diagnosis, they will not miss MND, especially something like ALS. If you had something that sinister, there is no way you would have been able to jump up and down on one leg for even half a minute, let alone a whole one. You do indeed sound like the rest of us folks...traveling twitches, perceived weakness, incoordination, cramps, stiffness, and the ubiquitous fear of the more sinister. It is obssessive in many folks here, even after multiple MD visits and EMG's. Do yourself a HUGE favor and accept the physician's medical opinion as more educated and accurate than your own. Yes, your body is acting out of the norm for your usual self. But the source is benign. Annoying but benign. The fear and anxiety feed the symptoms, whatever caused them originally. So do what you can to minimize your fear and maximize your trust in what you have been told by a highly paid medical professional. You have benign twitches and that is what most people in the world experience...benign twitches. Catch the nasty thoughts and replace them with the truth...the twitches are benign and you are well and should go on and enjoy your life.
 
Hi NettieI am in a similar situation to you, ive only recently started twitching, a few months for me, and i too have seen a GP. ALS is a rare disease, a person with ALS presenting with twitching as a first symptom is even rarer and then take your age into consideration as welli dont type *** when i mention ALS i think its gives it an unrealistic fear factor it shouldnt even have.i really hope you can get the anxiety under control so you can live your life as you should be, mines certainly lessened over the few months.look after yourself and i wish you the very bestRich
 
You are right Rich about the *** in place of ALS. Thats some crap huh!!! I just realized how true your statement is about the unrealistic factor! Good deal! You are right in everything you said to NETTIE to. I just keep telling myself, we can't all be visiting NUTTY doctors that keep misdiagnosing...They are smarter than us, I think!!! :sick:
 
Thanks for the reassurances everyone. Thank-you for clearing up the clinical weakness vs. other weakness too. Sandra, I just get scared that maybe the weakness is just starting and that's why I feel it, yet am still able to use the limb. I am experiencing some upper arm weakness right now which could be explained by another condition I have (TOS), yet I of course believe it only means one thing,Lovely, congrats on the baby. I love the name you picked. I wonder myself if some medication I am currently on (Advair) is what caused the twitching in the first place, although I think I used to twitch before and only fully noticed it when I googled like an idiot and became hyper aware of every move I make.Nancy, I just wish I could believe my doctor. I keep asking myself, why I can't. I guess I start thinking that only a neuro can tell me for sure if I'm sick or something. It just seems the more I test myself and panic, the more so called symptoms of *** I notice. I am still having an excess of saliva in my mouth today and I also seem to think my tongue is getting caught on my bottom teeth. I had an all out panic attack about it this morning. I was convinced I was slurring words to the point I think I actually started to. I'm a wreck. I am going back to my GP on Tuesday again and I just hope I will be able to accept what she has to say this time. Of course, I keep thinking I'll never make it until Tuesday because I'll be in the emergency room due to terrible slurring. I am convinced now I have the bulbar onset and that's something my GP would not be able to see. :(Rich, I hope I can conquer this anxiety too. I feel as my screen name says that I am missing out on life.
 
Please believe me - your GP knows more than you do. If you had bulbar onset it wouldn't take a neuro to see it. Your GP would see it - hell, your family and friends and the checkout girl at the grocery store would see it. I understand how you're feeling, and I understand this is very real for you, but trust me, you are not seeing things clearly. I said this about my GP in another post - OUR medical education comes from the internet and maybe some TV. Your GP's comes from 4 years of medical school, years of residency and years of experience practicing medicine full time. Again, please believe this - your GP may not be a specialist, and even if he/she couldn't specifically diagnose ***, he/she DEFINITELY knows enough to spot if you were having problems speaking and if you needed to see a neuro. You need to get your anxiety under control. THAT needs to be your focus. You do not have bulbar onset. It's a very rare presentation of a very rare disease, and it would be INCREDIBLY RARE in someone your age.I know that doesn't help you b/c it's not "impossible." Keep in mind, there is almost no disease is impossible for you to get - unless you are a woman and we're talking about testicular or prostate cancer or something like that. However, there are diseases that would be INCREDIBLY UNLIKELY for you to get, and *** is one of them. Not to mention, everything you've described about your symptoms sounds so typically BFS and anxiety, there is no doubt in my mind that you are OK.Please, talk to your doctor about your ANXIETY when you see him/her again. That is what you need to treat. Be well,Joanne
 
Nettie, Yes ma'am I agree with Joanne so much! It is SOOOOO HARD to see through the FOG I know it is! Been there, but as I've said and read what other people have said, these GP's telling us we are ok can't all be freaking QUACKS misdiagnosing us!!! Ya know? No way! Your problems your are experiencing run hand in hand w/ anxiety girlfriend. Google anxiety- you will see voice tremor, slurred speech etc. I promise your ok girl. Worry about other things and chances like a meteor hitting your house in the middle of the night!!! Thats what I was told 1,000 times!!! but I guess I thought, nahhh no way, I will be the one to hit the jack pot!!! Your ok Nettie you will get through this I promise! :sick:
 
Hi FriendI have been on this site for three years now and I was where you are now three years back, and believe me you have BFS and nothing more, honest.In my dark days I was convinced like you and many others with BFS that my days were numbered. Well let me tell you they were not, as yours are not too.I had no life. I could not eat, socialise and much more, yeh! A total zombie.Always take medical advice on any issue but please relax. I am now happy again and reborn. This thing take time to get used to, like any other illness, but things will improve.First, do not go on any nasty stuff sites’. The only reason I go on them is because I am 100% mentally fit and also to help others distinguish between symptoms. Your symptom match those of BFS, so please calm down.Second, remember this is a real condition, BFS or Peripheral nerve hyper excitability, is benign. You may have some other symptoms yet to come but they are all part and parcel of bfs. So don’t freak out.This thing feeds off stress and anxiety, also when this thing first strikes it strikes the (Thought)part of the brain, ( if that make sense) OCD is a symptom, obsessions is a symptom and know wonder too, this thing stinks.You must learn to accept it for what it is, a benign condition and then you will see an improvement.Please be strong.Take careChris
 
Thanks again everyone and thanks for passing along that pm too Chris. I read a lot of everyone's posts here over and over as a way to try to calm down. I am still having a tough time though because my whole right side seems tired (arm and leg). My right leg feels kind of stiff too. I have been doing self testing like crazy but I find it odd that the left side doesn't feel the same. It's weird because I'm right handed and generally have more trouble doing things with the left hand and leg not the other way around, so i would think the left side would feel more strained. I have alarm bells going off in my head right now. My twitching has suddenly amped up today too. It's in my right and left leg, back, chest and my right arm. My tongue is twitching too and I have this new twitch in the back of my neck that feels like my head moves with it. I am now TERRIFIED to visit the doctor Tuesday, convinced that instead of reassurance, she is going to tell me things have taken a turn for the worse. My mom has totally had her fill of me. She told me today that she misses having a normal conversation with me and I just hate that I am putting my family through this. I just want this to be over but I am convinced that this is just the beginning of a battle with ***.I'm so sorry to go on and on like this. i feel like the biggest complainer here and that I probably sound like a broken record.
 
Nettie--Your symptoms all sound like BFS. Lots of folks had twitching start off in one place, spread and then "settle down" back in a more limited area. My right foot twitched almost steadily for two months, after the twitching had largely receded from the rest of my body. Now, my right foot twitches no more than anywhere else. I get little popcorn twitches around my ankles--mainly the right--pops here and there in the calves,thighs, arms ,etc. And some days, I get them everywhere, some days almost nowhere. It's just twitching; it may be caused by an autoimmune condition, anxiety, pinched nerves, but in the absence of true weakness and atrophy and a host of other indicators, it's just twitching. And you don't have true, clinical weakness.Perceived weakness is also a sign of anxiety (as are muscle twitches--as TwitchMe wrote, this stuff feeds off anxiety and vice versa) and you could be stiff as a result of the self-testing! I found myself doing some pretty stupid maneuvers early on in this, like one-legged knee-bends, standing up out of a chair on one leg, standing at the urinal on my toes (and drawing some rather ribald comments :oops: )--these are not natural and it's no wonder we feel stiff and "weak" after doing them. Excess saliva can also be stress-related and is only an issue among patients with ALS because they have difficulty swallowing it. Excess saliva itself is not a sign of the apocalypse and as others have said so well, you'd have quite noticeable symptoms beyond the saliva if you had bulbar onset.Don't fear the doctor--listen to them, a lesson I had to repeat myself just this week. There are the occasional board-certified jackasses who lack compassion or shoot from the hip, but your doc doesn't sound like one of those. She won't blow off signs of MND and if they tell you that you don't have it, you don't! You're NOT the "biggest complainer" (I am--ask my wife); this site is intended to exchange information, seek reassurance, compare notes. So don't beat yourself up over this, just take to heart what everyone hear is telling you, trust your doctor and don't let this thing grab you like this. It's benign and you'll be OK.Mark
 

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