Page 1 of 1

18 YEARS THIS MONTH

PostPosted: June 27th, 2014, 6:36 pm
by Nytviolet
:mrgreen: I'm new here, and wanted to tell my story (for anyone interested). I can still remember when it all began... I had (several years prior) been dx'd with Chronic Fatigue, and had gained some serious weight. As my CFS went into remission, I began to really push myself to drop the weight as quickly as possible. I was on a lean, high-protein diet and was pushing myself to run daily, lift weights 2-3x per week, and tennis every weekend. When I suddenly noticed the "feelings of weakness" and the widespread twitching, I did the same thing that everyone else does: I looked up the word "Fasciculation" and went into an abyss of fear that lasted for over 18 months. Back then, there was absolutly NOTHING on the internet about BFS, and the only information associated with fascics was horrifying. I remember crying myself to sleep. I saw two separate neurologists and had a total of four clinical exams (no EMG's because it wasn't warranted, but they did peripheral NCT). I remember one neuro laughing at me and saying, "why are you so worried? If you have ***, you'll be dead in 1-2 years anyway!" In retrospect, he was trying to lighten the mood because he was so certain I didn't have anything wrong with me, but at the time, I took it the wrong way and began to mentally plan my funeral. I returned the following week with my mother and had her witness the testing and speak with the neuro afterward (my brain was spinning so fast that I couldn't adequately digest what he said). So yes, I still have twitches... some are nearly invisible (like tiny little pulses beneathe the skin) and some are big thompers that rock my whole bicep. I'm not saying that there is any affiliation, but I've been diagnosed with fibromyalgia, and many years ago tested positive for the Epstein Barr Virus. I can tell you that dehydration makes mine worse, and I avoid alcohol completely for that reason. Adequate sleep is important (because when you're tired, they seem to be worse), and PSYCHOLOGICAL STRESS will really make them go crazy. I also experience feelings of weakness in arms and legs at times, but nothing that would be construed as "clinical weakness". I feel vibratory feelings, electrical buzzing sensations, and have even had leg jump so hard it woke me from a dead sleep. MY THEORY is that we have a dormant virus in our body that (when subjected to stress) excites the nerve fibers, and sends them into overdrive. I'm really enjoying this forum, and certainly wish that this had been around 18 years ago when I began having BFS! Great website.

Re: 18 YEARS THIS MONTH

PostPosted: June 27th, 2014, 7:24 pm
by bobajojo
Nyt,

Thanks for checking in. I have no doubt that 18 years from now, my body will still be firing away as well. How often do you feel twitching? Do you have tongue twitching as well? I'm always so curious about others experiences.

-Matt

Re: 18 YEARS THIS MONTH

PostPosted: June 27th, 2014, 10:17 pm
by Red Raider
Thanks for the post reassuring thank you for sharing your personal experiences made me feel better. Everybody needs to read stuff like your post because it just goes to show them that nothing is fatal like ALS.

Thanks Houston

Re: 18 YEARS THIS MONTH

PostPosted: July 3rd, 2014, 6:08 pm
by Nytviolet
Hi Guys, just getting back to you now (work has been busy). I twitch DAILY, and WIDESPREAD, although it waxes and wanes. No area is exempt (I'll often yawn and get a cramp under my jaw, my eyelids, my lips, my biceps, my forearms, the outside muscles that affects the pinky finger, the upper abdomen, the deltoids, the calves, the bottoms of my feet, hamstrings --- geez, everywhere)! Stress and fatigue are BIG triggers for me, and right now I also have the accompanied "perception" of weakness in my left bicep and left leg. Often when I'm working long hours at the computer, I'll notice jumping muscles in my left bicep (near the crook where it meets the forearm), but this has been going on for a while, and I have no loss of strength. I can walk across our living room (about 25') on my toes, and the same distance on my heels. The other day, our water cooler at work was empty, and I easily hoisted one of those large cannisters atop the machine (not an easy task for many women). I do not have foot-drop, I do not have excess saliva, but (when stressed) may stumble over a word or two... it's called being a nervous wreck. I also have trigger points (due to the fibromyalgia) that can really cause my symptoms to go into overdrive when I'm run down (and one of the sorest spots on my body is the inside of my left elbow, where the worrisome twitches are). I believe I mentioned that I have previously been diagnosed with CFS, EBV and mononucleosis... all of which can (and do) affect the nervous system. It is also said that people with fibromyalgia are shown to have an excess of "substance P" in their spinal fluid, which is the chemical transmitter for pain signals. Thus, we are hyper-aware of every twitch, cramp, tingle or jolt. As a result, I've spent a good number of my adult years convinced that I've had everything from MND to pancreatic cancer, to ovarian cancer, to Guillain Barre, to glioblastomas, and so forth. I once visited my dentist and insisted that he examine these deep, red spots on the roof of my mouth (I was positive they were oral cancers). Turns out, I had been sucking on a popsicles and had burst a few cappilaries!! THAT is a perfect example of how my deranged mind works. As some of you may already know, there is another website for chronic health anxiety (don't know if I'm permitted to mention the name), but you would be SHOCKED at how many people in the general population have severe health anxiety and are convinced of MND / MS / etc.. Anyhow, I'm so very glad to have found this website, and I hope that everyone will have a blessed, relaxing weekend. Be Well :D

Re: 18 YEARS THIS MONTH

PostPosted: July 16th, 2014, 10:57 pm
by leaflea
Health Anxiety can be comical at times. I once went to the dermatologist, so happy I could be squeezed in on a cancellation, because I had feared (was positive I had) for a couple of days...a melanoma on my shin. I thought a small virth mark had changed to a black, large, raised mole. The doctor stooped and looked at it closely with her little scope while I held my breath holding back tears, and proclaimed definitively and flatly "that's a scab." Its an embarassing tale to tell, but sometimes it reminds us how ridiculous our minds can be and convince ourselves of falsehoods.

Re: 18 YEARS THIS MONTH

PostPosted: July 19th, 2014, 12:12 pm
by joshi
have you ever thought that what u can have is one of the many forms of Myopathy? here in this forum everybody is worried about MS and ALS but it is clear that nobody has it. The symptoms often mentioned here by many persons fit perfectly in a myopathy ... myopathy is often misdiagnosed as fibromialgya and CFS. That's because neurologists, test just CPK and make a EMG thinking that it is enough to detect neuromuscular problems... WRONG

Re: 18 YEARS THIS MONTH

PostPosted: August 24th, 2014, 11:58 am
by Nytviolet
I know this is an older post, but my doctors aren't even looking for myopathies. As of now, I'm starting physical therapy bc of cervical and lumbar disc issues. They're so far off the Mark it's ridiculous, but I'm playing along-- giving them the benefit of the doubt bc they have a medical degree and I do not. Frustrating at times, but I'm grateful to God that I'm still walking and talking 18 yrs later. To answer another posters question: I do not get tongue twitches...but just about everywhere else.

Re: 18 YEARS THIS MONTH

PostPosted: August 24th, 2014, 1:45 pm
by veryworried123
Great post

Thanks