Upset and Twitching Since March

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PandaGurl101

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I am so upset right now! I dont know what else to do other than post on here to those of you who might understand. I keep thinking this is finally going to resolve, and it never does. I have been twitching since March. When I first noticed the twitching and was alerted to the threat of ALS, I went straight to my GP who prescribed me Klonopin for anxiety. I took it for 2 weeks with no affect, so I stopped taking it. I finally got into my neuro last week (after a long and agonizing wait). He didnt check my strength, and didnt offer an EMG. The only thing he did was check my reflexes and said "I dont think this is anything serious. Lets see what an EEG says." He also put me on Pamelor for depression to see if that helps anything. I have been taking it for only 6 days and so far my symptoms seem worse. I know I have to take it for at least 2 weeks before its fully in my system, so I will see how that goes. Anyway,Today I had my EEG. I didnt even get to see the Dr. He wasnt in. The girl doing my test told me "If there is anything abnormal we will call you. Otherwise we will see you in July at your follow up.!"WAIT A MINUTE??? JULY??? How I am I supposed to go another two months living like this?? He did not give me ONE example of what this could be, or even say that the twitching is benign. How can they just send me on my way for two more months without telling me anything?? I feel like I am dying and they say see you in two months? My whole summer is ruined!!My symptoms go on forever. Twitching all over my body but mostly in my right toes. Jerking and jolting at night while falling asleep. Shaking, tingling in my legs, face and arms, excersise intolerance, shoulder pain, muscle pain in my upper arms, pounding heart, and constant worry. What should I do??? Part of me is saying that since he doesnt want to see me for another two months, that is a good sign. But I am just upset over the fact that he hasnt told me this is benign. He hasnt told me anything!! Which means I have to worry and wonder for the next TWO MONTHS! I will never make it!! :whistle:
 
Hi, I hate the way some of the medical profession seem to turn a cold shoulder to the human emotions that so many of us go through when something like this strikes. He is undoubtedly not in the least bit concerned. Not necessarily because he is a jerk (which I am not saying he is) but because from his perspective its nothing. However, and that's a big however, we don't have his expertise or ability to know that and we NEED them to talk to us. When that compassion element is missing it is very hard. Having said all that, take cheer, if your neuro isn't concerned then I would say that you've not got anything to be worried about. You might consider revisiting you GP and have him get the neuro's report. Perhaps he can give you the info you need and the peace of mind too.How old are you??Cindy
 
Hi, thanks so much for taking the time to respond. I really appreciate it. I am a 28 year old female. So I know ALS is very rare in people my age, but being the worry wart that I am, that doesnt help me too much. HAHA.Deep down I know that his "lack of concern" means that I am probably fine. I just wish he would have taken the time to tell me that he felt the twitches were benign. Because I know all benign twitches are BFS in one way or another. He seemed more concerned about the jerking than the twitches when I talked to him last week, and I have read on here that alot of people with BFS get the jerks. I guess thats why he ordered an EEG....to check my brain waves because of the jerks. I am just hurt because he didnt take the time to tell me ANYTHING....I didnt even get to see him today. Which I think is wrong. And then to find out they wont even bother calling me if the EEG is normal, and to come back in 2 months.....It just makes me so angry!! It makes me feel like they are just in it for the money, ya know? I am seriously considering getting a new neurologist, because this isnt the first time he has "let me down". Thanks again for responding, it helps to know I am not alone.
 
Dear girl: You are WAY too young to be worrying about this, but hey, I was the same age as you when I had my first ALS worries. Twenty years of child rearing and running a business kinda kept me distracted, but last year it all came back with a boom. My docs think it is menopause related (the anxiety anyway). I would say you are exactly right about changing neuros---remember YOU are hiring them, not the other way, and if they don't perform according to what you are paying, then find someone who will. I am way sure that he makes more than you and I put together :p But really, find someone who will communicate with you. Don't stay on this track any longer than you must. You have a whole life to live.BlessingsCindy
 
Hey AA, your my AGE! And Im pregnant w/ my first child just a few days away from delivery. My neuro a very good one..NEVER DISMISSED my worries BUT she did say "it is VERY VERY unheard of to have *** at your age", I Said "yeahh but I've heard of it and I've seen it on the net" and she said...the reason why it was a BIG DEAL and made HEADLINES was b/c its SOOOO RARE.Secondly. I told her from the get go I was scared about "IT"...She did clinical gave me the green to go..It lasted for about 2 weeks then I went back for a follow up and I got conned into a EMG ..(she surprised me w/ it) but she knew I couldnt just let this go...w/out one. EMG was fine just as she said. Just as my GP had said..and OBGYN and Psychiatrist and Psychologist etc..Its benign! I understand completely where you are coming from. See another NEURO if you can. I say its worth every PENNY fo PEACE OF MIND. I really do!Lovely
 
He said he didn't think it was anything serious, and your reflexes must've appeared okay. Just try to relax until July, you'll be fine. You have your age, gender, and reflexes all on your side! Also the fact that you've been twitching two months and haven't made any mention of any clinical weakness makes things even better for you. Also, jerking, jolting, tingling, pain, pounding heart, constant worry are not ALS symptoms. Your symptoms sound 100% Anxiety Disorder to me.In fact, I had exactly the same symptoms as you, plus "lump in the throat". My doctor gave me Paxil, which finally after about 6 weeks, has alleviated just about all my anxiety symptoms, EXCEPT for the twitching and jerking (it actually made them worse, but without any weakness, alleviation of worries from the medicine, and some reassurance from this website, I can live with them). But what you take is up to you and your doctor.
 
Hey AA!Listen I know you are on the edge of your seat and ready to know "whats wrong". The problem is that even for those of us who had a diagnosis of BFS (everyone on her after different time periods) they still cant give you "definate answers" and there is no treatment (per say). There are some neuros that acknowledge "BFS" and others that dont. My neuro did a clinical exam and said "ok come back in 2 months". I came back in two months and he did an EMG. At the end of that appointment he said we had to wait 6 MONTHS! I was having panic attacks every day, thinking it for sure was ALS because he didnt even mention BFS. So the next appointment rolled around and I was prepaired for the bad news and he said "everything is good, its just BFS". Well come to find out at my LAST EMG he said that he wanted to wait and do the last EMG to make sure there werent any neuropathies or carpal tunnel (which there was). He said he never even considered ALS because my clinical exam was good to start off when I was having visible twitches, cramps and tremors (that he saw in my arms and legs and hands). So PLEASE do not jump to conclusions. They would NEVER let you leave not knowing if its ALS or anything related. If there was ONE HINT that you had MND they would have scheduled you for more tests or reffered you to another specialst for MND. So please do not worry, im sure the doctor is looking into other issues. I have had an EEG done and the EMGS/NCV's and all you need is the clinical. Now you said "well I didnt get the clinical" but the reflexes are a BIG first sign in ALS. Its the first thing they did and even on visists he didnt do the clinical he ALWAYS did the reflexes. This must mean that they are one of the first indicators of MND and you should be happy they were negative! Just try to get out and enjoy the summer time and spend time with your family. Do YOURSELF a favor and DONT stay on this computer looking at this symptom and that symptom. You can't make those calls, its a neurologist that can. I say this because I had completely crippling anxiety for over a year and it was a waste of my life and time with my family. You never get that time back, so go out and do the best you can. Take baby steps and when you get scared go for a jog, do 25 sit ups and remember that BFS changes and makes you have "perceived weakness, twitches, cramps, tiredness and tremors"....it will change over time..may get worse...may get better or stay the same. But rest assured you do not have ALS. If you need anything or want to talk (this goes for anyone) I am available by PM to help you out if you need someone to talk to.Sean B.
 
Thank you Sean and everyone. I do feel alot better about things today. I am strong and I can get through this. (Keep telling myself that over and over) Besides I figure we all gotta go sometime. There is no Neuro who can save us from that. So whether I get hit by a car next week or get cancer or ALS.......I am living it up until that point because we only get one chance at this life. Why waste what time we do have on worrying and being scared to death? There are alot of people out there worse off than me so I just thank God every day. Sean, you are right.....my condition is 100 percent anxiety and I know that. It has been something I have struggled with for years. And the waiting is the hardest part. But each day that passes and I am still strong is a good sign. Thanks everyone!! Keep your heads up!!
 
Good Job AA, Listen to Sean and Others. Cindy has been great support but before Cindy came along Sean walked with me through this hand in hand. I think he sat on my shoulder at the doctors office and let me sit on his at his appt's. He guided me through this whole thing trying to save me from losing my LIFE to anxiety , stress, and irrationality. Everyone (except for the few that come on to scare people) have been a great source of strength, but even at times you got to walk away from this board and LIVE! Your fine. Reflexes mean A LOT with ***. Its assymetry on onset. I've asked, I've been told, and I've read. So take great pride you had great reflexes. Take Care Keep fighting the worry demon, Lovely
 
Hey there AATiday, try not to worry. I've been twitching and now buzzing for almost 9 months. I also have the achiness in my muscles. My doctor says the twitching is benign. Well, my twitching is just about gone and now I have "buzzing" in my left foot and many muscle aches, depending on the day. I really don't think doctors have the answer for this condition, other than to say it isn't progressive.Hang in there.Linda
 

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