Bubbl3Bottom
New member
New here. Hope this finds you all as well as you can be with this often awful condition. I'm a 26 year old male who's trying to figure out what exactly is happening to me. I've been a lurker here for awhile. I'm hoping some of you out there can be of some help and that perhaps I can be to some others. There are days when I'm convinced I have ALS, other days when I'm sure I'm a BFSer. I have been having occasional feelings of fatigue (and a single instance of cramping) in my right shoulder since last August, with increasing pains and perceived weakness in my wrists and forearms in the late fall. I had all but assumed that the arms pain/weakness? was a symptom of my nearly constant typing with claw hands. I have a low chair and a desk that's too high. I'm a journalist, teacher and screenwriter (unbelievable and completely unrelated, but a friend of mine won an Oscar tonight for his script! Maybe one day...) and had thus all but diagnosed myself with carpel tunnel, especially after a couple instances of tingling and numbness in my hands after a night of typing. Then, the fasciculations started. For the past two months I've been experiencing muscle twitches. I first noticed them in my left thigh around Christmas and soon after the new year they spread all over my body. I swear it was after I googled the symptoms... I first got scared of MS because of the numbness and tingling, then ALS because of the occasional but noticible fascics. For awhile they were constant (20 or so an hour, some just one instance, others that would occur 10 or more straight times continuously). They seem to fluctuate depending on how much anxiety I have, how much I'm thinking about them (more), weather I've went jogging that day (usually I don't have them after jogging for a few hours, but I have more that evening than usual) and especially, weather I sleep or not. Perceived weakness spread to my knees and my lower legs. I've had terrible sleeping patterns for years. Marijuana and/or Valerian Root seem to help. Melatonin, which worked for me early in college, mostly just keeps me up now. Now the weed makes the twitching worse and makes me terribly anxious, unable to sleep. I rarely get more than 5 or 6 hours a night and when I'm anxious about twitching, I can't sleep at all.Then, some good news. I've seen a pair of neurologists in the past three weeks. The fear has retreated somewhat. I've had two clean NCVs and EMGs, although a nerve in my left leg was alittle slow in the 2nd NCV (my 2nd neuro, a burly Kosovo vet named Rocco, suggested it was because I was cold). The 1st neuro, who laughed off my suggestion that it was ALS but performed the tests anyway, didn't even suggest I had carpel tunnel, while Rocco thinks I may have mild CTS. We're still waiting on blood work to get back, although from reading posts here that very rarely seems to provide any answers (organophosphates poisoning, lyme, minor blood related MND, thyroid issues, calcium/magnesium/potassium deficiency seem to be dead ends mostly)In the two weeks however, I've gotten anxious again. Although the twitching has reduced somewhat, I've developed consistent if not painful crepitus (joint cracking and popping). Its alarmingly consistent level. Ankles, knees, elbows, wrists, shoulders, you name it, they crack. For a 26 year old, this all seems increasingly weird. Then, in the last week, I've noticed a frequent clicking in my throat. In just the past few days, I've been having excesses saliva collect in my mouth. I feel like I have to swallow every 10 seconds! After years of eating poorly, smoking too much bud, I finally thought I'd gotten myself in good health this past year (lost thirty pounds from changing my diet and running), but these various ailments have been driving me batty with worry. My neuro wants to do one last EMG test position... in my tongue!!! We were supposed to do it yesterday, I went all the way out to one of his offices near Coney Island, but when I arrived he didn't have the specialized, superthin needle yet to do it (he says using a conventional EMG needle would hurt too much). Perhaps thinking about doing this last test, even after he conducted a thorough (four limbs, lower back and neck) EMG has been causing anxiety about bulbar onset symptoms for me, which then has me salivating too much? Still, the crepitus had me convinced I had muscle wasting. I've become like a girl with anorexia, constantly examining my body for gaps and dents.I've long been a hypochondriac. My liver failed when I was just 16 years old! I think it was do to mixing too much alcohol (A considerable amount of vodka on a Sat night) with several aspirin (4 the following day or two, if I recall correctly), but I'll never know. I had a near miraculous recovery after being put at the top of the national liver transplant list. My mother, a born again Christian, believes it was a miracle from God. My faith isn't as strong as hers, but who am I to say it wasn't? Regardless, I read a post that Aaron posted a few years back about liver enzymes being a possible cause...I don't know... What I do know is I'm driving my friends and family crazy. It's all I seem to talk about. My girlfriend, who I've only been with for a couple of months, is supportive to a point, but she certainly can't empathize. I've been working on a script about the LSD using baseball pitching Dock Ellis (you'll laugh your ass off, even with all this grim stuff bouncing around your head --- ), but I haven't been able to work on it at all for 2 months! I've been a *beep* teach and journalist and producer and boyfriend recently...I know conventional medicine doesn't have a whole lot of answers for bfs... Has anyone tried The Master Cleanse by Walter Burroughs or any other alternative medicine techniques? Any clue how I can stymie the saliva? Sorry for the crazy long post...