Insight would be appreciated!

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Insight would be appreciated!

Postby Dustyn19 on June 24th, 2013, 5:00 pm

Hey everyone, I feel relieved...somewhat...to have come across this site and I am hoping to get some feedback regarding my situation. All started about 7 months ago while teaching CPR. I was talking away and slurred a word....almost like my tongue spasm'd. The rest of the class was uneventful. The next course I taught, about 5 hours in, that spasm happened again and my word/words came out slurred again. For the next 3-4 weeks it got worse and worse every day, and along with the intermittemt slurred speech came a nasty headache, severe dry mouth which ended up with hospitalization over Xmas because they could not find anything in the gamut of tests I was going through. Only thing they found was that I had low potassium (3.0). I was released on Boxing Day, still a headache, still slurring, still dry mouth. I woke up on the 28th and the slurring was gone....but extreme anxiety was not. The dry mouth has been about 90% better with bad days followed by a few good days...the headaches are basically gone...save a few here and there...but now I have twitching all over my body (particularily in the arches of my feet, my left upper eyelid, quads, groin etc). Along with that I have a very sore face...around both sides of my jaw, and into my neck above the atoms apple. If I flex my head back I can feel the tightness. Also my face trembles when I half smile and I have a very mild tremor in my lower jaw (if I try to hold my teeth close together they chatter away. Also experience a lot of fatigue despite plenty of rest.
My question is whether BFS would present itself This way, or if I am barking up the wrong tree...and if I am, where should I go next?
25 y/o male - Paramedic...no other health issues (this is enough)
I've had CT scans, blood work, MRI, neuro assessment which ended without any EMG's because I had/have no loss of strength or balance. Sorry for the lengthy post.

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Re: Insight would be appreciated!

Postby LuckyAdam on June 24th, 2013, 8:19 pm

Hey Dustyn,
I am 30+ months in to BFS. I twitch 24/7 in my calves and arches of my feet. I get random twitches everywhere else.
I have the half smile tremor you speak of. My teeth also chatter when I touch them together and I have a constant tremble in my jaw. You can probably read about it in some of my original posts. I also suffer from tight muscles everywhere especially in my arms.
I remember when this started I went and saw a Rhemotologist and when he asked me to stick out my tongue my cheeks shook like crazy! I'm going to the dentist this week and I'm embarassed because when I have to hold my mouth open for any amount of time it shakes like crazy. Just part of living with BFS.
In my case, BFS causes twitching, tight muscles, cramps, and a internal tremor.
If I can give you any advice it is to just accept that you don't have ALS. Like I said, I'm going on three years into this and it hasn't gotten any better or worse.
I hate to say it and I know it's hard to believe when it's happening to your body but the dry mouth, tongue tied, sore neck, etc. could be from stress and anxiety. Stress is like doing an isometric muscle work out subconsciously. I bet if you could relax you'd feel much better. I know, easier said than done!:)
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Re: Insight would be appreciated!

Postby Yuliasir on June 24th, 2013, 11:39 pm

HI Dustyn,
looks like you had just a normal tiredness (holy crap who would not be tired talking 5 hours in a row! in front of not very interested audition (I suppose 'cause CPR is of course INTERESTING for me personally but I understand that it is not the same as watching nice movie). And after that it just was going crazy because you frightened yourself... practically all what you say points to severe stress - dry mouth, headaches due to constant hyperawareness, and even pain in the jaws and neck which could be well a result of too much teeth clenching (many of us have TMJ troubles).
The fact that your initial symptomes just gone is a good sign. All what you sAy about your typical symptomes for now points to BFS.
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Re: Insight would be appreciated!

Postby Dustyn19 on June 26th, 2013, 6:47 pm

It's funny...I've never really wanted to succumb to the idea that my initial symptoms were fatigue/anxiety, but I can't say for certain that it isn't. I literally laughed out loud about the dentist thing...I just went through the exact thing, but now my dentist thinks I'm terrified of needles because my lower lip trembled like crazy. Also I just got married 3 weeks ago and people thought I was about to cry because as I smiled at my beautiful wife walking down the isle...my face trembled like crazy again.
My neurologist thinks I had some type of post vaccine cranial neuropathy, as I had a flu shot, my DTAP vaccine and my TB test all in the same day...about a week or so prior to all hell breaking loose. My primary care physician wants me to see an endocrinologist to rule out Hashimotos because of the tender/tight muscles, the clicking when Swallow, the intermittent dryness and hoarseness.
I think the absolute worst fear I have now would be MS or an early onset Parkinson's thing (I should say I'm 95% certain it's not either). I've lost the thought that it was a motor neuron disease...as I'm sure I would be declining instead of improving.
I sincerely appreciate all the members on here who take the time to reply to the 100s if not 1000s of people who are just looking for support and can find the solutions they are looking for.
One other question I do have is whether something like BFS would cause a slurring of speech...if it was affecting the cranial nerves?

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Re: Insight would be appreciated!

Postby chrissi on June 27th, 2013, 2:08 am

Hi Danny,
I wuill just copy a part of my 126 sx list (just my face stuff) for you so you might find some relief:

head: head tremor , I think deriving from my spine, makes whole head tremor, occasionally my whole head is shaking with my pulse, very weird, dizziness, vertigo
face: facial twitches, especially lip twitches in the corner,some nose twitches, strange sensations on my face like invisible hair, gle-like-sention, water sensation, face tremors in cheeks, right side of face along jawline going numb
jaw/mouth: jaw twitch when I loosen it, tingling/numbness from my ear to my chin along the jaw bone, jaw tremor makes my teeth clap, buzzing "electrical" feelings of jaw, lips and tongue, gum itching, burning tongue, bad lip tremor when smiling or drinking, tongue twitches that can be induced by yelling or wiggling my tongue
neck/throat: globus sensation, feeling of dry mouth or extra saliva, problems to get swallowing process started, tongue biting,tongue feels heavy , huge and and "strange", choking, neck twitches, involuntary swallowing "jerks"

Those are for most parts symptoms of chronic hyperventilation, which I suffer from. Episodes with a severe increase of those can be triggered by a change in breathing pattern, like extremely deep in- and exhaling, talking a lot with chaotic breathing etc. so eventually you were a chronic hyperventilator and something you did in that course (maybe the in-and exhaling during CPR???) just threw it over the edge. I bet you will find Chvostek sign if you try it. There's a link between BFS and hyperventilation, many BFSers develoo hyperventilation during the process, others had it prior to it. I have slurred words too and my jawline was SO crampy and stiff...
As you seem to have access to medical stuff, I would advise to get your Carbon dioxide levels checked as well as your blood pH.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Insight would be appreciated!

Postby chrissi on June 28th, 2013, 6:15 am

Quote from an HVS homepage:
As previously mentioned, hyperventilation syndrome may produce symptoms in many different systems in puzzling combinations. Cardiovascular symptoms such as tachycardia, precordial pain, and Raynaud's phenomenon may be associated with hyperventilation syndrome. Neurological symptoms associated with this disorder in addition to those previously mentioned may include unsteadiness, impaired memory or concentration, and slurred speech. Patients may also manifest general symptoms such as fatigue, diffuse weakness, insomnia, or nightmares. Respiratory symptoms associated with hyperventilation syndrome may include shortness of breath, chest pain, sighing respirations, and yawning.
Gastrointestinal complaints may include dryness of the mouth, dysphagia, bloating, belching, flatulence, and abdominal pain. Hyperventilation syndrome may be due to hypocapnia, alkalosis, increased cerebral vasoconstiction, decreased cerebral blood flow (headaches), and increased nerve sensitivity.
Chronic hyperventilation also causes a condition called spasmophilia which includes brisk reflexes, pseudotetany, fasziculations, cramping and muscle soreness.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Insight would be appreciated!

Postby eric77 on November 10th, 2015, 10:44 am

It interesting that you mention DTAP. My symptoms started about a week to two weeks after my Tdap vaccination (Tetanus, diphtheria, acellular pertussis). I am starting to believe this may have been the cause to my twitching and other symptoms. Here is a link talking about the vaccine and guess what, muscle twitching is one of the side effects a long with many more. Although I can say for sure it was from this, I can say my twitching started a week to two weeks after and muscle twitching is a side effect listed on Mayo clinics website.

http://www.mayoclinic.org/drugs-supplem ... g-20071983

Thought I would share. I have been much better over the last year. I still twitch but nothing Like I did for the fir 4-6 months of my experience.
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Re: Insight would be appreciated!

Postby pinprick on November 11th, 2015, 1:15 pm

Nothing before? everything ok?
then ...Tdap vaccination
Then all the crap is there ...
Obviously the Tdap is the culprit ...

I find out on the internet many testimonial having lot of crazy neurological symptoms after vaccination (that is not the majority of peoples hopefully!).
It's not ALS ...

Bye
Idiopathic SFN (head to toes) ... auto-immune related
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