Anxiety-Driven Twitches: My Story

Hi All,I haven't been here for ages, mainly because I've been twitching for 18 months and stopped worrying about it a long time ago but also because I was diagnosed with something which really is serious. Boy does it stop you worrying about twitching!What is interesting is the way the twitches behaved all the way through this experience which has proved to me that they are anxiety driven. After a core biopsy on a breast lump and a nipple biopsy, I had to wait a week for a result. My twitches were worse than they have ever been and I just didn't care. I knew that they were harmless but that there was something much worse going on. Again, after they removed the breast I had to wait for results of a full body CT scan, a full body bone scan, microscopic analysis of the breast and removed lymph glands. I watched my thighs jumping in the waiting room. They have ignored them and there is obviously no correlation between the fasciculations and the cancer. I had 2 grade 3 tumors, Paget's disease of the nipple and pre cancerous cells in one lymph node. The body scans were clear.This has certainly put this twitching into perspective. I have a one year follow up appointment with my neuro in October and I don't think I'll go. I'll be in the throws of chemotherapy and my BFS will be the last thing on my mind. My treatment is for 'insurance' purposes as they removed all of the cancer they could see. I feel confident that I'll be ok and guess what - the twitches have slowed down! Some of you may remember a post from me suspecting breast cancer months ago. I was right and had Googled myself a diagnosis - it just took the NHS a long time to agree. I have to ask myself whether the doctors didn't believe me because I'd also Googled myself MND and I was very wrong. Did they have me down as a time waster because of my constant visits to the doctor about the twitches? I wonder if my medical records suggest hypochondria and they felt the need to dismiss me when I presented yet another life threatening condition. So! Don't panic everyone - the twitches are harmless and just a *beep* nuisance. When something really threatens you they remind you that they are there but they pale into insignificance where they belong. I'll be ok - I'll get through the chemo and I'll probably still be twitching - but I will be very much alive. Forget them and enjoy life. Jan

Jan,I am so glad your self-advocacy got you the treatment you needed. I hope you have a great support system and this process has gone as smoothly as it can. I do wonder however if your twitches are related to your cancer. There is a theory that twitching is caused by antibodies that can be triggered by infections (viral or bacterial), cancer, or other things. Since your twitches have gotten better since your cancer was removed, this would point in favor of the theory since your body has nothing to fight now. Of course it is just a theory and really not one you should have any reason to think about. I am sorry to hear when anyone has cancer but I know the world is making major efforts to fight it (especially breast cancer) and that the number of life longer survivors is extremely encouraging. From the attitude that comes through in your post, you will no doubt be one of them.Krackersones

Thank you for your post. It sounds like, despite your history of anxiety, you are coping very realistically with your cancer diagnosis. Hopefully, your post will sink in for a lot of us and we will put the twitches in perspective. I have found, however, that the twitches have put my life into perspective. I can only imagine what a "real" threatening diagnosis would do for me. I would want to handle it just as you have.

Hi Jan,I often think about you when i log onto here because our symptoms were so similar.I wish you well with your recovery.Stay in touchZoe

Krackersones - I was trying hard not to make the link between bfs and cancer because I don't want to make the people on here more worried than they already are. The only pattern I can see is related to anxiety. I had blood tests for antibodies both when my bfs was being investigated and my cancer. Both were negative. I have found this board really reassuring over the past 18 months and I am trying to use this awful experience of mine to help. The two main messages I want to give are the link to anxiety and how the past month has made that clearer, and the way I have been ignored by the medical profession for 6 months. If I had listened to my gp when he said that my twitches were harmless it would have saved me a lot of unpleasant tests and a great deal of worry. Also he may have listened when I went back with self diagnosed cancer. I sometimes wonder if the doctors think we make all of this up. Jan

Jan,I totally understand why you do not want to make a connection between your twitching and your cancer since it will cause anxiety for many on this board. I have a different opinion on matters like this as I think information should not be hidden simply because it may cause anxiety. I have had many pms agreeing with me on this from board members but I also respect those that disagree. The problem is both points of view cannot always coexist comfortably here. If there is a connection between twitching and cancer (and there are studies supporting this) it can actually help people to get doctors to take a cancer concern seriously. I have not had a cancer investigation since my twitching started but if I develop any possible signs of it I would definitely bring up my twitching as an added reason to investigate it seriously. I have had three breast biopsies (all of which were negative) for breast lumps. The first one was a 3 cm lump when I was 19 years old. I went a year without having it biopsied because the doctor said it could not possibly be cancer. The second doctor that felt it had me in surgery the next day and was stunned it was not biopsied before. I have a tendency to develop these benign breast lumps (called fibroadenomas) so I will likely have more anxiety provoking waiting and battles with doctors on whether to biopsy or not in my future.Also, the fact that cancer can provoke the immune system and cause twitching does not mean that it is always cancer that causes the immune reaction. In fact, the studies I saw stated that it is a rare reason for the immune system to react. To my mind, the cancer/twitching connection just adds some evidence to an immune/twitching connection and thus some non-ALS understanding of what may be going on. To me this is helpful.I further think that anxiety does stimulate the nervous system so even if it does not cause twitching it certainly makes it worse. It can also effect the immune system and thus may play a role there as well.I hope my comments on a topic you wanted to avoid has not upset you. I just feel so strongly about dealing with information head on even if the information is not clear cut.

Jro, your post is idiotic and insensitive. Your religious zeal for the gathering and vomiting out of information has reached new lows. You don't seem to care who you hurt, so long as your own narcissism is sated. Do you know how many people that have come to this site have come down with twitching as a precursor to lung cancer? That would be zero. Do you know why that is? Well, that would be because the link between the two is so tenuous that it is highly likely that it is not valid, and sure as heck is not worth the investment of worry that it might engender. Yet, because you "read" about this possibility you feel that it should be shouted from the roof tops, along with all the other spurious factoids that you gather in you InterNET. This isn't about "sharing" useful information, so that we will all be informed, it is about you having a voice for your own enormous insecurities. I'm sorry to tell you this, but your neuro is not better than my neuro, your information is not better than anyone elses, and you don't need to set the bfs record straight for any of us. This is Jan's thread. She had something to say, something important, something highly personal, but apparently your agenda supersedes this. Did you actually reread your post before you sent it? You are telling people about your benign breast lumps when you were 19. While I'm sure that was a worry for you, it doesn't equate to what Jan went through. It also doesn't give you any special insight into anything. All it tells us is that you are an obsessive-compulsive with need to tell you own story, over and over again.Jro, go and see a therapist. A great start would be to read the book "Feeling Well" by Dr. Burns. Oh, and if you feel inclined to defend yourself, which you will, why not write your defense on your own thread, so as not to sully further what Jan was trying to say. This way, you can tell your story again for the 200th time, and elucidate the bfs masses with your own "chalk full of information" thread.Basso

Jan, I found your story truly inspirational. It hit me in the gut and my heart went out to you. Your description of your journey with bfs, and then cancer, is an affirmation of life itself. Your attitude in the face of such a trial is a great lesson to us all. Thank you so much for sharing, and I have no doubt that you will continue on your path to full recovery and then wellness. The rain pours outside my window, but your story has spread the sun through my heart.Basso

Basso,You really never give anyone the benefit of the doubt regarding their motivations and your inflammatory language designed to intimidate and insult robs at least for me anything you have to say of credibility. You seem to think sensitivity trumps everything even information that may greatly benefit someone and you only feel some deserve this sensitivity given the way speak to many on this board. I recounted my experience with breast lumps because I have and will continue to have to deal with the issue of when and whether and how to investigate them in case they are cancer. My experience has been that the doctors all disagree on what to do and you have to advocate for yourself sometimes to possibly save your own life. It sounded to me like Jan was sharing in part how her own self-advocacy played a role in her being treated in a timely manner, so I think my comments are relevant and does give me insight into how self-advocacy does play a role in breast cancer detection and treatment.You also state that the connection between twitching and cancer is so tenuous as to not be valid but you provide no basis for this other than I'm sure your hopes (along with mine and everyone else's) that it is not true. This board is here in part to provide information relevant to people who suffer from unexplained twitching. Providing information about this topic is appropriate and many (based on the pms I receive) want the information even if it causes some anxiety. I do not know what experiences you have outside your home, but I am bombarded with information about how the sun can cause melanoma, that you need to examine your skin and breasts monthly for changes, that you can get and die of the swine flu if you do not wash your hands and touch your face. This information does not come at me at my request. It is shoved in my face whether I like it or not out of real concern and a belief that it may help people. It does cause anxiety certainly but it is information that many feel should get out. You could also say telling anyone your story about cancer causes them anxiety but Jan's post was hopeful and contained information that showed how you need to trust your instincts and get checked even if it is stressful and how this can make all the difference. Many people are denied screening (biopsy, ultrasound, mammogram) even though they have an instinct that something is wrong and the fact that they twitch could help them get screened since in the US insurance companies make these decisions not doctors. I have fought this battle and know for a fact that anything you can say that helps your argument for screening can make a difference in getting that screening. You have called me narcissistic (I guess you are a psychiatrist). You state that I think my neuro is better than yours. You state that I think my information is better than others. You state that I have an obsessive-compulsive need to tell my own story over and over again. You are entitled to your opinion. I personally do not feel that it is fair to make such definitive statements about someone you do not know. I discuss my neuro and his credentials to add context to the opinions of his that I relay to others. I give the information to help others evaluate the information more completely. A person's credentials are relevant to the weight you give their opinion. What a person makes of it is up to them. In fact, my opinion about my neuro is not static and I have no sense of superiority from seeing him. In fact, I always like hearing about the experience and credentials of other people's doctors on here as it helps me evaluate their doctor's opinion. I repeat aspects of my story because I do not assume everyone on here (especially new members or viewers) have read all my posts and I want them to make sense of what I'm saying and where I'm coming from. Repeating this is actually a nuisance but I hate reading something and not knowing the full picture so I take the time to give a little background so others do not have this problem. I guess I'm the only one who ever does this.I am far from perfect but the people who know me see that while I have my selfish moments like everyone (maybe not you), I do care about other people and spend a lot of my time engaged in activities that do help others. Maybe I do this selfishly because helping others gives me pleasure. I am a teacher and I love reading the unsolicited notes from students about how I've helped them. I also have faced open ridicule from others for tutoring after school for no money. They say it is because I have no children and thus no life. I am used to others making judgments about me but I actually think what they say says more about them than me.

Hi, I had two clear messages which were intended to help. I didn't want to promote an argument! I too am a teacher which I suppose is why I was using one point to illustrate another. I have continued this thread as pm's with Basso and Zoe.Jan