Welcome! Moving Forward with BFS

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BubbleHipy

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Hello!I am recently new here and THOUGHT I was moving on to the accepting phase of BFS and promised my family (and myself) that I would move forward and live my life. I am a married 36 year old with 3 little girls! Three weeks ago I had a normal EMG of my right arm/leg. My twitches are body wide, so my neuro thought it would be okay just to do the right side unless something abnormal turned up. I have dealt with symptoms like twitches, tingling, buzzing, arms/hands falling asleep, leg pain, upper back/neck pain (all of this on and off for MANY years). I had several good years and then BAM, back they came this summer! So back to the neuro I went (I never officially got a diagnosis and was losing my life to the fear of it being MS or ALS). His thought after my many tests (previously have had MRI, spinal tap, blood work, and now EMG) was that it was benign (BFS).Anyways, before my appt. I noticed the "lump in my throat" feeling. I mentioned it to my dr. as one of my symptoms, however, he never really addressed that part. Now, my twitching has died down some, but my throat is driving me crazy. It's been about 4 weeks of on and off feelings of my throat twitching/closing up, that lump feeling, trying to clear my throat a lot, and just last night I started hearing a clicking or popping noise when I swallowed. I feel like I have an excess of saliva and then get panicked that I can't swallow it. However, eating and drinking have not yet been a problem. Now I'm back to square one....PANICKED about bulbar onset ALS. I am sticking to this site as it makes me feel so much better, not wondering off to research like I normally would, but I'm driving myself crazy. So my questions are:1. Should I go back to my neuro asking for an EMG of my tongue since these symptoms are so much worse or would the EMG that I had of my arms/legs 3 weeks ago have picked something up?2. I am not on any meds but have been thinking about asking for something for anxiety. I've never been on any meds in my life but am thinking it could help. Does anyone have a recommendation? I don't want to become "addicted" and just want to feel like myself, not emotionless! Thoughts/ideas????Thanks so much! I truly appreciate any advice/replies and value the support of this forum!
 
I went to the Mayo Clinic with bodywide twitching including my tongue. They gave me an EMG of my left side only (no EMG of the tongue). When they were done, I asked why they didn't EMG my tongue since I was having so many tongue fasciculations. They told me, "If there were anything worrying going on in the bulbar region, it would for sure show up in your limbs." So your clean EMG of your limbs 3 weeks ago should ease your bulbar fears. -Matt
 
I had similar throat/tongue and saliva production issues for several weeks.Don't worry about it, in time they will dissapear (and probably another symptom will pop up)
 
Hi dear,if you search the site for 'throat", "swallowing' or 'bulbar fears' or other related words, you'd see that almost every fellow here once went through this period and had been experiencing more or less prominent throat or tongue related symptomes, same as yours.Most of them are related to autonomous disregulations casued by stress, anxiety and fears itself. Quite a big part is linked to esophagal and throat spasms and condition called GERD which is often diagnosted as part of our symptomes set.and believe me no one of fellows had ever developed any bulbar paralysis.our symptomes are different, they have different origin compared to bulbar paresis/paralysis (not loss of swallowing reflex but spasmatic activity in the throat and swelling of throat mucosa due to autonomous system reaction caused by stress and/or irritation caused by acidic reflux, in case of GERD).Please let it be and it would become less and less noticeable.HugsYulia
 
I believe it is a cricopharyngeal spasm. I have experienced this many, many times, especially when my anxiety is high. As you can see, the cause is stress and anxiety.Symptoms Sensation of a 'lump' in the back of the throat Throat feels swollen Discomfort - Lump can often feel quite big and pain is occasional Symptoms normally worse in the evening Stress aggravates the symptoms Saliva is difficult to swallow, yet food is easy to swallow - eating, in fact, often makes the tightness go away for a time 'Lump' sensation comes and goes from day to day Symptoms can persist for very long periods, often several months. The symptoms can be mimicked by pushing on the cartilage in the neck, just below the Adam's appleCausesStress and Anxiety. Other causes are not yet clear. In some cases, eating certain foods may bring on acute spasms, in susceptible individuals. Peanuts, pumpkin seeds and other nuts may trigger these spasms.[citation needed]
 
Thank you, thank you, thank you for taking the time to share your opinions, support, and words of wisdom! I appreciate it more than you know! I felt a sense of calm after hearing that there are others who have had these same throat issues and it's still just BFS! I couldn't believe how my symptoms seemed to match the post on the cricopharyngeal spasm from Gloria123...I appreciate you posting that link along with the symptoms/causes. My stress level has been at an all time high dealing with my fears of losing my life and leaving my husband and little girls behind :( I am trying to deal with the stress and anxiety in my own way, but it's honestly been harder than I thought! I am using this site for reassurance, guidance, and the support in knowing there are so many others out there just like me :)All four of you, Yulia, Matt, Gloria123, and Fjordian, are people who I've read many reassuring and supportive posts to others when searching through this site, and this time it was me who you really helped ease the panic! Thanks again :)
 
it is very important to see what is going on I belive. I was the same crazy frightened lady 2 years ago and I even told to my husband and daughter that I may pass away in few years :(((they were kind enough to forgive me becasue they had seen I am working 12-14 hours a day without dayoffs so they suposed I am just overloaded and tired... and this site really put me back to critical thinking (and my therapist and my psychiatreist did also a lot to let me live with fears and cope with them).Wish you a good recovery,hugsYulia
 
You're so welcome. I remember how frightened I was when I first encountered throat/swallowing issues. But, over the past 2 years I have seen it come and go with me, and 100% believe that it's related to anxiety. In fact, a friend of mine who does not have BFS was saying that they were having swallowing issues tied to a very stressful time, and I could relate it back to this immediately.The first time it happened, I could barely eat and then I took a xanax which relaxed me and my muscles and I was all better. I then realized that it had to be related to anxiety and not some disease process.It still happens from time to time, but I'm still anxious (I suffer from GAD and health anxiety)! Just remember, it's totally normal, most of us have experienced it, and it's related to stress/anxiety - nothing else.Mitra
 

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