'Chronic Twitching and Pain: 15 Months'

[queenofthenorth]

Hi to All, Here is the story in brief, kind of; -Twitching all over 15 months now. -shoulders pain for a year. -the routine numbness,tingling,vibration,pins and needels,parathishia etc.. 15 months. -thigh pain/twitch 4 months ago after 30 minutes sport, got better since.- Dx with GERD 6 weeks ago, medicines didnt help, only now the burning/sor thraot feeling went away, but still have hoarsness voice ( on and off, all day ), and also develope some CRAZY symptoms of face muscles tense/tight feelings.lower jaw feels (only feel) slower, and toungh is tingling at times and dry/burning and feels weird.face has randome quick twitches that comes and go ( Thats a new symptom, Never had face twitches in 14 1/2 months!!). I do have clicking noise on my jaw when open and close, and i know the tmj stuff, but this dont seem like its possible all to relate to tmj. ALSO 10 days of excessive Yawning and for a while have stuffy nose feeling comes and go, and breathing through nose at time is very hard, at times finding mysef exaling lots of AIR through my nose ( if a candle is next to my nose, i'll put it off). Went to ENT and Allery doctors that couldnt explain this ( other than GERD ). -Saw over 60 doctors to date, over 10 neur's,went to *** center few times, doctors all over world, all say NOTHING!!!- 7 clean EMG's in last 15 months ( one did pick up the twitch, but Doc said it BENIGN ). Anyone with info, please write to me, THANKS.

 

[DJH621]

I've had BFS for many years and have had most of your symtoms at one time or another. Think most of us get eye twitches,but I've had twitches elsewhere on my face, i.e. sides of mouth, forehead, etc. It's interesting that you should mention the yawning. I've gone through many periods with excessive yawning, (not normal sleepiness yawning), I absolutely know it's "abnormal yawning". Sometimes it will happen with just a few seconds in between yawns, (or at least I think so---haven't timed them and haven't had it in a while.) I've never mentioned it to any of my doctors because I think they'd just say to get more rest or some such thing. I have mentioned it to friends though and they basically say they yawn alot sometimes too. I know mine is different though and I can really relate to what you're saying. My "yawning episodes" started over 20 years ago and they come and go, so I'm sure it's nothing serious---it's definitely "different" though. I have wondered at times if it's related to BFS. After reading your post, I'm pretty sure that it may be. I also have a lot of the clicking jaw noises as well as other jaw issues. I don't think mine is TMJ as it comes and goes with my other BFS symptoms...very strange disorder! Best Wishes, Denise p.s. shoulder pain and occasional "preceived weakness" have been part of my BFS symptoms from day one. It's odd how so many of us have shoulder pain......

 

[DJH621]

Forgot to mention, I've had GERD for over 20 years---I have many symptoms from the GERD. Sometimes I'm not sure if it's the GERD or the BFS causing certain symtoms. I do have to take medication for the GERD on a daily basis though or I feel terrible, nausea, heartburn, trouble sleeping because of acid in my throat, etc. Best Wishes, hang in there, it'll get better. You may need to change GERD medication if you're taking it. If not you may need to start taking medication. Denise

 

[ZekesTraveller]

Boy few posts mimic my own as yours. I could have written this myself.... word per word! Well a few minor changes though. Mine come and go. I have pursued a rheumatologist opinion not long ago but have gotten nowhere. I had an MRI of the brain in fact three MRIs to be exact. Turns out I have a cyst on my pituitary gland. I don't know that this explains the myriad of symptoms but it might since this gland controls so many others. I have and have complained about these symptoms for some time now along with the twitches.Three things I will ask you to pursue with your doctor(s):1. Rheumatologist for Sjogren's syndrome since you report very specific items I have homed in on. Regardless of what anyone states only a lip biopsy is conclusive.A. Do you have dry, blurry red eyes?B. Do you have dry mouth with occasional globus sensation?C. Do you have joint pain?D. Do you have dry skin?E. Do you have many cavities over your lifetime?F. Do you have bouts of tiredness that come from nowhere?G. Do you have occasional nasal dryness?H. Are you female?I. Do you have GERD that you know is not really GERD in a sense?J. Occasional hoarseness in voiceK. Do you go a lot to eye doctors...if you couldL. Do you see a lot of dentise?M. Do you see lot of ENTs?Some notes on this matter. I have gotten nowhere because:1. I am male2. SS-A & SS-B Testing has come back negative three times3. ANA about 4 have returned negative2. Endocrinologist to determine hormone level and function this is where I am now.I only mention this because my doctor is currently pursuing this at the time.3. MRI for a Schwannoma. These are hard to see even on MRI so just read up about it and nudge the doctor with questions about these and how they could be compressing cranial nerves.I recently learned about these myself since one of my MRI showed chronic inflammation in my sinuses that may be compressing my cranial nerves causing the weird facial sensations and the "cyst" has not been conclusivly been identified. It's not a tumor and it has not grown in 2.5 years of MRI scans. The hardest thing I have found with BCFS is that it is so hard to differentiate BCFS with other possible illnesses. BFS/BCFS can and does mimic other illnesses. Sometimes your tongue can feel dry and tingle and Just feel weird because of the over neuro sensitivity due to BCFS/BFS hypersensitivity that comes with this illness.Keep me informed if you would!Diazapam bust trough these symptoms ASAP. This is short term so ask your doctor. I have learned that this works great from me. This is a Benzo so don't fool yourself that this would be a long term treatment.ZekePM me if you want to discuss further.