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Anxiety Ridden Newbie

PostPosted: November 21st, 2013, 6:57 pm
by tresie
I am 44 and have suffered from health anxiety since childhood. I have also been a "twitcher" for about 10 years. This past August we sent our oldest away to college and it was bittersweet for me. At the end of September I started back on my Zoloft for my anxiety and Trazadone for sleep. A week after starting back on the Zoloft I got this cramp in my foot and a few days later my palm started twitching, moving my thumb. Allover body twitches ensued. I immediately was terrified it was ALS. I surfed the internet and read the als forums. Read some bulbar stories and then omg while drinking water I would feel it move slowly down and of course my tongue was scalloped, tongue twitched, etc.

Saw the neuro at the end of October, he mentioned BFS and ordered the usual tests. My neuro exam was normal and he mentioned gerd being the cause of the swallowing difficulty. He could tell by my reflexes that I was tense and nervous-DUH!! He did the emg on all four limbs which was normal, asked me if I wanted to get my tongue tested mentioning it was the most painful, I asked him if he thought I should, and he said no, because I don't meet the criteria for ALS. My husband, who was there, knowing my anxiety, wanted me to get the tongue emg but I didn't, Of course I went back a few days later and had the neuro do the tongue, which he said was normal, and that if I continue with the swallowing issue to consult with a gastro doc. He called a few days later with my mri results which were normal, except for some herniated cervical discs. He prescribed a muscle relaxer and told me that I "really need to relax".

Fast forward a few days later I come down with some sinus issues and postnasal drip and even though I feel like I have to sneeze, I CAN'T!!! Of course I start freaking out because this has to be a sign....still having the transient swallowing issues and oh my gosh, am I hoarse??

I am STILL obsessing, worrying about bulbar onset, worrying that the neuro saw something bad on the tongue emg and didn't tell me, worrying about every swallow I take, (I swear I feel it threatening to go up up my nose now), checking my soft palate, taping my voice to see if it sounds hoarse or nasal, Still unable to sneeze, and now I have a constant lower eyelid twitch which has been non stop since Saturday. I am a complete and total mess!!! When I asked my my dr if I should increase my Zoloft he said that that I no amount of medicine will take away my fear of having this rare disease and that I need counseling. Thanks, doc, but I already knew that!!

Have any of you had the absent sneeze issue? I was sure that the swallowing issue would have gone away, but I am still so worried!


Re: Anxiety Ridden Newbie

PostPosted: November 22nd, 2013, 12:08 am
by Yuliasir
Hi Theresa,

being about the same personality like you (43, GAD since 6 yo and my daughter is already for a second year in her studies over the ocean from me...) I feel so much sympathy to you...

Nope among my other issues I never felt like I can not sneeze. Also never I heard or read that lack of sneezing act (however it is highly reflectory of course) is a sign of bulbar paralysis, becasue they are different reflexes. Of course missed sneeze had happened to me as to many other people in the world, and even not so rarely, but I never really give it another thought. Missed sneeze just happens sometimes, that is all. it just means that you did not have enough level of excitation to make your muscles contract and sneeze (but probably your sensory system plays with you making you feel like you are about to sneeze). That by the way is more plausible, considering the fact that your essential tests are OK.

As for thinking about the doctor saw something bad on your EMG and did not told you is of course typical for us (you are not alone with that) but of course completely meaniingless, becasue doctor (a) has no reason, neither human not preofessional to do that, and (b) should he or she do that, it can cost a license practically becasue it means purposeful misleading a person about life threatening condition! what doctor would like to do that purposedly???

another important issue was for me that you say to yourself "Thanks, doc, but I already knew that!!" regarding counselling - do you have some reasons not to follow your doctor's advise? Becasue really, when my daughter went last year to her very very foreign colledge (11 hours of flight), I was practically taking meds and using my speaking therapist extensively and that is why I practically was able to continue my work and my life - becasue separation fears were my real pest since 6 years old, and I did everything to go against them letting my daughter to pursue her dream. Of course I was twitching too :)

Therer was a medical study conducted quite recently (you probably can found somwhere here a link to its description on Pubmed), in which medical stories were raised for people wisiting one of neurological clinics for about 20 years or so (retrospective study). It was done to reveal typical features of two patient groups - those who twitch before paralysis onset of ALS and those who just twitch and never were recorded as ALS victims later. Researchers managed to find abut 5 or 10 'twitchers first' (which really gives and idea of what is the percentage of such presentation - several patient stories in SPECIALIZED NEURO clincis for TWENTY years) and of course dozens of just twitchers. And imagine what they did find? That people who just twitch and never had ALS then - all had either previous story of hypochondria, GAD, OCD, depression etc. mood disorders or developed that right together with twitching onset (or rather twitching was a symptom of their OCD or GAD onset, not of onset of ALS). With your decades of anxiety disorder you could be sure twitching is becasue of that, not becasue of anything else, and of course all other symptomes are well known for you except lack of sneezing but I am sure you are having just missed sneezing common for everybody but overconcentrating on that.

If you have food getting to noze sensation it is really for gastro - I had that too and it was resolved by antacides.

Re: Anxiety Ridden Newbie

PostPosted: November 22nd, 2013, 2:25 am
by Anxious guy
Hey, just to reinforce that assurance from Yuliasir ... If your doctor thought there was event a hint of anything to be concerned about they would tell you.. They would order more tests to double check results etc
The fact you are so anxious / have health anciety is one of the biggest problems, I have had health anxiety since a child but its got worse this past 4 years (I am 34) and it really went into over drive when my tongue started twitching then like you I got twitches all over including various hot spots that stay for days/week/months !
Don't let the worry and anxiety run away with itself as it will fuel the twitching and that's not going to help you ...
I am still battling my anxieties but its a road you/ we can reach the end of and get a while lot better!

Re: Anxiety Ridden Newbie

PostPosted: November 22nd, 2013, 7:23 am
by emmie.s
Right after my second EMG this summer, instead of celebrating over the good news that it was clean, I started obsessing over a new symptom that popped up right after: liquid coming out my nose when I swallowed. I was angry at the Universe and angry at my body for what I felt like was a betrayal: first the twitching, then the cramping and weak shaky feelings, and then this too to confirm what the docs had missed, I thought. The truth was, my anger was misplaced. I should've been only angry at myself and my lack of reasoning and logic, and my failure to get my anxiety under control. I made the conscious decision to turn to doctor Google again and again, finding stories to fuel my paranoia when I knew better. Please don't make that mistake.
Bulbar is so very rare, and it's onset is rapid and UNMISTAKEABLE. You would have no doubt that something was very wrong. You do not have it, it is clear from your story that you have BFS. Rejoice in your clean EMGs and accept your benign diagnosis, stop looking for loopholes and what-ifs.
My own swallowing issues have resolved. I do believe they were caused by a combination of my own mind stressing out and of sinus allergies or slight heartburn which I know I have.
I hope you really do seek therapy and/or meditation and/or prayer and of course reach out to us here when you need it. You're not alone.

Re: Anxiety Ridden Newbie

PostPosted: November 22nd, 2013, 7:30 pm
by tresie
Thanks so much for the responses! Your words have helped! I intend to call and make an appt with a counselor next week. I always tell my husband that if I wouldn't get these symptoms I wouldn't worry-- Health anxiety is a slippery slope and I slide often and well! It's great to have this forum to read the experiences and know that I'm not alone!