Neurologist Visit After Delay

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LilTiger92

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I tried to post back before thanksgiving but the board was having some issues and I kept getting kicked out. In a nutshell on Nov 21st I saw the neurologist whom I was originally scheduled with (if you see my past posts it took a month to get to that appt so I saw a horrendous nuero prior. I should have just stuck it out for this guy but hindsight is 20/20). The Dr I saw was more than qualified and he had a fabulous bedside manner. I was his first appt of the day and he spent a good deal of time with me answering my questions and reassuring me. Not only is he the Chief Neurologist at the local hospital he also completed a fellow in NMD and a fellow in neurophysiology AND he was the head of a NMD clinic at Downstate University here in NY before coming to work at the group he is now. In his own words when he saw me, "I AM the NMD guy". So after lots of poking, prodding, jumping, etc he said you're fine. What you have is BFS. To which I said I know about that because of this forum lol. He then told me a story about how the clinic would hold free friday appts for the staff and invariable drs and nurses would show up twitching thinking it was NMD and it NEVER was. He said they uncovered some parathyroid stuff, a few mag deficiencies, a case or two of MS but never anything more troubling. They even nicknamed it Fasciculation Fridays because of the preponderance of twitchers that would turn up. So I left feeling better mentally. Physically I was still the same but I had to believe him. I had an EMG from the other doc which was normal (left arm, leg), the dr who perfumed that EMG said it wasn't NMD and now the NMD guy says it's not. He said he wouldn't have even ordered the EMG bc it's unnecessary and painful (uh....YEAH!). Days past, things stayed the same and even got a little worse. I started having some seriously horrible tailbone pain and could barely sit. Twitches were constant. But I stuck with it. I went home over the holidays which is a very peaceful thing for me and surprisingly (or not) I started feeling better! The tailbone pain went, my sleep improved (it's been weeks since I could sleep), my anxiety went down, even a few days with decreased (but not gone) twitching. Fast forward to now. I have never focused on bulbar stuff. I overlooked it and was glad I didn't have odd things like that to worry about. But now I am starting to get some odd sensations. It feels weird in my lungs, like I have butterflies or tickles and sometimes like there is a weight on my chest. When I swallow I feel like i have to work hard to do it. The amount of saliva I am producing is disturbing. I am constantly having to swallow and feel like my mouth is always full of spit. It's awful. I don't have tongue twitches that I am aware of and I am not going to start looking because that is a road I don't need to go down. No speech issues other than the common one of my brain getting ahead of my tongue and me stuttering or stumbling. (That's fairly common in anxiety I think?) But here's the weirdest...I feel like my stomach is twitching. Also my esophagus and the back of my throat. I don't quite know how to describe it. For my stomach it feels almost like a wretch but something much more mild (I'm not actually wrenching). It feels like a spams of the stomach. The same for my throat and esophagus. I also have the "lump" feeling in my throat and some nausea. And of course now I have what I am guessing is what you all refer to is a hotspot in my thumb. Every few minutes it is twitching like crazy. That with the bulbar stuff has me going insane. So yeah...I had a great visit with the dr. I was doing so well and now BAM! I have these stupid, stupid fears. Anyone else have these weird sensations and can help me ease my mind? My GP is literally ready to admit me to the hospital to the psych unit because she is afraid of how anxious I've gotten (no joke, she called my therapist about it and thankfully my therapist talked her down) and I refuse to call her again and I don't *think* this warrants a call to the neuro (plus another one month wait). I guess I just want to hear I am not alone? I'm two months strong on twitching now with no other "progression" so I have that going for me I guess plus the good neuro visit. Arrrrghhhhhh....this is so frustrating!!!!
 
Hi,no wonder that wintertime makes more bulbar fears due to overall dark times and flues (same summertime does but rather for hey fever I think).so, what do you have and what have people with the bulbar onset?BO: deneravtion of glottal nerve, denervation of vocal cords, denervation of throat and mouth. Manifested with difficult slow eating (literlly every piece of food takes efforts to chew and swallow), choking with the liquids due to disrupted swallowing reflex, extremely slurry and messy speech, cpecific flat or crooky voice, loss of ability to intonate and change voice pitch deliberately.BFS: autonomous disregualtion, GERD, cricopharingeal and esophagal spasms at the completely preserved swallowing reflex, general hyperecitation. Manifested with hyper and later hyposalivation (first your mouth is wet, then it would be dry), swelling of throat and nasal mucosa, painful and somewhat 'tight' swallowing, coughing and clearing of the throat, especially after meals, pain or feeling of foreigh object going down the esophagus (not necessarily), feeling of compression in the chest (often like weight inside). Slight hoarseness or nasality is possible but you can fully control your voice tone and pitch, you can deliverately shout or whisper while people in bulbar paralysis can not.Usually taking some maalox helps to relief most of those symptomes casued by hyperexcited upper GIT.Hope that would help a bit.
 
by the way I also had several issues of strong and unexplained tailbone pain in my life, well before BFS and after its onset. If you are hypermobile, it might be a result of hypermobility and usually it is resolved on its own in a few days.
 
BFS may be benign but its not symptom free.....You aren't alone in your symtpoms. Many of us here all have the same and it waxes and wanes. BFS is benign meaning it won't kill you but for a lot of us its also a painful and bothersome condition. coping is the true battle once you move past the fears.
 
I'm glad I've read your post as I'm going through similar issues at the moment. Not sure if I can help but ill try.I've been twitching since Feb this year. I have a clinical diagnosis of health anxiety. Won't go into it here but have been off work with it and am due back in January (really not ready but financially I need to). I am on and off escitalopram (5 mg and have been on 10mg but it makes me eat more at a higher dose and I keep my weight at 5 mg. Plus I like a glass of wine)I went eventually to see a neuro specialising in MND / ALS in September and October and both times he diagnosed me with peripheral nerve hyper excitability / BFS. He said the SSRI msy be a part of it but hard to say. He admits he twitches and he also has leg vibrations neither of which bothers him.He would not do an EMG unless I desperately wanted one since he also said not necessary and painful. Plus it can make you more anxious if there is an abnormality regardless of the fact he knew it would not be related to the dreaded you know what.In between these two visits I started to think I had bulbar issues with too much saliva and lots of throat clearing . I have been a chronic throat clearer all my life with dreadful post nasal drip and gulping that definitely gets worse with anxiety. I went to a boarding school and it would drive my room mates mad as I was constantly clearing my throat and coughing. An incidental visit to a paediatric neuro (for my son who went through a ticking phase) who runs a tourettes clinic left me with a possible diagnosis of mild undiagnosed tourettes!!!! Not sure but possible since I'm OCD and neurotic! Anyway, in October this year I had an ovary removed and I deliberately came off the escitalopram. A month later I developed the most awful stomach cramps and reflux and pain under my left rib. It was agony. I found it hard to swallow and I had a lump in my throat. It was if my whole system had slowed down.Now my focus was on pancreatic cancer and my twitches subsided.still there but I stopped worrying. I went to a GI who did scans and crests and it turns out I have a weird pancreas (divisium) but no cancer. He told me to go back on the SSRI as I had a spastic colon caused by coming off the pills. 90% of our neurotransmitters for are on our stomach and that's why there's such a link between anxiety and stomach problems. The lump in the throat is globus (I knew that as I've gad it before). I reluctantly went back on it (I only did as he's one of the top GI doctors in the UK) and do you know what? My stomach problems have gone.I'm not saying you need to go on an SSRI if you are not on one but it demonstrates the link between the stomach and anxiety.Now I'm back on MND but this time bulbar. I played tennus and did my leg in panicked about limb onset but the leg is better now after seeing a physio. But the fear of MND is now back again. My throat clearing has upped and I'm coughing and swallowing more. No problem with eating and drinking though. Tongue looks normal and there are no fasciculations. It definitely quivers though but so does everyone's.I'm not a doctor but I think what you have going on is anxiety causing these symptoms. I went off work a year ago with a thick tongue that could hardly string a sentence together and I still tell my son to flush the fridge and brush his nose . I remember saying to my boss "that'll put a cat among the magpies" instead of pigeons. I've even driven off with the passenger door of the car wide open wondering why it was breezy in the car. Ive also left a psychiatrists office without my handbag and coat and had him chasing me with them (after crying to him for an hour that i had dementia). All of this is anxiety.As I'm sitting here my calves are twitching like mad and yesterday my tongue pinged - but I can't see any twitches. I'm clenching my jaw and I have a scalloped tongue.I'm hoping I don't have bulbar but it's hard not to be anxious. Remember anxiety can cause many many physical symptoms that I would never have believed a year ago.What I love about this forum is there is a place for me to come and feel positive. I'm sure you will be fine. I'm hoping I will be too and it's hood to share experiences. Sorry for the long post but I'm hoping it will help.
 
Hey Tiff, That`s great you seen another specialist who has given you the reassurance that your ok and this is just plain old BFS..The thing I keep telling myself with BFS is that it changes and picks a new hotspot when it likes as right now I still have my tricep twitching every few seconds and its been going a month or more and I have now got twitching feet especially my left foot and I got worried as its my left leg with the bad sciatica pain but I have been told pain is not indicative of the thing you/some of us fear ! I am right about pain guys aren't I ?My tongue twitch has hugely calmed down now and generally happens with a hot drink oddly enough or if I move it but only once every 30 mins or so which is way better than every 30 seconds or so which is what it was doing !!My point being that hot spots seem to change.. As you may remember my first hot spot was on my chin 4 years ago that stayed for months followed by twitching all over that gradually subsided ...my thumb 10 years ago that moved up and down like a heart beat on its own for a year but I don`t know if that was a twitch or what you could call that !
 
Thanks everyone :) As usual I am on from one worry to the next. The stomach thing has gotten better. Not really sure what it was about but it took a while to subside. I still have the weird, tickle lung feeling and my thumb is driving me MAD!!! That's what I am currently obsessed with. It twitches constantly. It's this fine, barely noticeable twitch sometimes and others it's a huge twitch over and over. I can't stand it. Luckily I have been preoccupied with finals so that kept me from having time to get on the Googles but now they are finished and I have plenty of time to obsess. I'm trying to keep up the positive thoughts and it's so nice to read your responses. Thank you all for taking your time out to answer! It's nice to feel like crazy town doesn't have a population of 1 lol. This forum and all of you are great.
 

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