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Author Topic: I am SO OVER the whole A*S thing -- making myself insane over this!  (Read 637 times)

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Offline NytViolet

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WARNING:  May be TMI for neuro-phobes:  I've been reading and debating for many days as to whether or not I should write about my **S phobia on here, because I feel so ashamed, but ultimately, I had to admit I need some solid advice.  As some of my fellow **S phobics are aware, I first began experiencing BFS 17 years ago while running daily and playing tennis on weekends.  The fascics and feelings of weakness came on suddenly, and I mustered up the courage to visit two separate neuros (for a total of 5 visits, I believe).  At the time I was CERTAIN I had MS or **S because of the fasciculations, fatigue and feelings of weakness all over, etc.  It's embarrassing, but I also had true difficulty emptying my bladder, electrical sensations in my arms, decrease in sexual function (not desire -- inability to fully orgasm - sorry if TMI).  About 8 years later, (and after peripheral electro-conductive tests (not EMG), 4 full clinical exams  blood work, MRI of brain and spinal cord) which were all normal, I found out two things.  1) I'd had an acute Epstein-barr virus infection and 2) They suspected fibromyalgia -- later dx'd by a rheumatologist.  I continued to go about my business for the next several years obsessing about other illnesses... never taking any one too seriously.  Then *POW* I'm in the midst of a full-blown **S panic all over again!  I feel shaky and weak in the left arm and leg, the bottoms of both feet burn, some fascics (not terrible). I'm so terrified of **S that I almost wish they'd dx me with MS because it's manageable!  I personally know two people with MS who are doing great (you'd never know it to look at them).  My fear is this:  My BFS or fibromyalgia has finally gone AWOL and is now killing my motor neurons (e.g. it was a very slow, insidious onset and now it's got me).  I am particularly alarmed because I had a flu-shot September 2013, and am thinking it may have harmed me.  In the past two weeks I've noticed that my left arm seems to fatigue more easily, and my rotator cuff and occasionally my forearm aches.  There is a buzzing sensation in both lower legs and they feel "heavier" than normal with burning feet (intermittent).  I have not dropped anything or tripped, but I'm terrified that I will, then I'll really lose it.  I still have widespread fascics, but they seem to be more noticeable than usual because now I'm really paying close attention. Guys, I know this sounds like a jumbled, frantic mess, but that is because it's being written by a deranged person. Trying to work full time and run a home with this broken-record in my head is just awful.  BTW, I am 49, about 30 lbs overweight, mildly HBP, and my only known diagnosis is Fibromyalgia. I take blood pressure medication and Ativan prn.  The most frustrating part is that I have symptoms of Fibro, MS and also fasciculations!  Nothing seems to fit.  I'm at a loss and I really want to avoid wasting the doctor's time (and my money) going in for expensive and frightening tests.  I need a voice (or voices) of reason.  Please help me get beyond this!
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Offline thenomnomnomicon

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I got nothin'. You're me right now. My feet don't burn, but my 'aches' are more widespread. What do yours feel like? Mine tend to either be nerve or tendon centric. Putting pressure on my ulnar nerve makes it hurt.
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Offline NytViolet

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My aches feel like over-worked muscles. I don't know how long you've been dealing with symptoms, but have you considered fibro yourself? Widespread pain, feelings of weakness, fatigue and even fascics are part of the symptom picture.  The tendons on the bottom of my feet are achey (probably from walking around the house on my tip-toes and heels like an idiot), and I have a deep, tendon-type aching in my left arm from the rotator cuff all the way to the elbow (where it's very tender, like a bruised feeling), and my forearm just FEELS weak (although I can still type 85 wpm andn play the piano without any problems). 

If it were the dreaded **S, it would begin with weakness and lack of coordination in my HAND, not a general feeling of weakness/aching in the whole arm (at least that's what I'm telling myself).  Rationally, I know it's in both our heads, and I also know that when I'm under severe stress / anxiety, my fibromyalgia tends to flare.  For some reason, I'm fixated on **S since about May 25th (I believe I was trying to reassure another member on here who was in the throes of his own phobia, and it suddenly made me hyper-aware of my own symptoms). Sending you a big slice o' peace of mind my friend.  Hugs.
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Offline Niceguy237

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Sorry to hear about your rough time. 

I am in the same boat as you.  Constant anxiety about my symptoms since February.  One stiff shoulder for like 4 months.  That same arm was uncomfortable shaking yesterday during my tricep workout.  Very scary.  Also have weird white coating on back on tongue, randomly sore thumb, one partially numb finger (result of injury that still hasn't healed), and tense muscles in face.  Neuro thinks it's bfs or anxiety.  I certainly hope so cause my mind is going bonkers over ***. 
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Offline thenomnomnomicon

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I feel the same way about MS. Every time I see a doctor I'm secretly wishing they'd just throw it on me. My right leg is by far the most concerning for me. How did they check you for Eipstein-Barr? I had a lot of blood-work done when the twitching first started -- all negative, but it seemed to follow a pathological route. Beginning in my feet, ascending, and is now widespread, but also diminishing (slowly, over a month now).

My limbs vibrate pretty badly and I have some definite ulnar issue (depending on my position, my pinky goes nuts and I have pain when applying pressure on my ulnar + electrical zapping into my pinky and ring). I'm thinking CT from self-testing (wonderful how testing for illness feeds into suspecting it). I have the same pain in my right leg. Occasionally just resting my keyboard on it causes pain.

I have a neuro appointment in 2 days. Hopefully it goes well. With the CT I have a valid reason to request an EMG. My right is more powerfully affected and I know unilateral symptoms are unusual in ___. My gait still feels weird 50 days in. I can still hop and my foot hasn't dropped that I can tell.

With this ONE F***** DISEASE, I continue to feel like, 'there's no way it's hypochondria. I never twitched a day of my life before. I've put myself through more stress purposefully (caffeine, amphetamines, etc.) and never twitched'. If I live through this, this will definitely be my last episode of hyponchondria. If my body can do this, I'll never trust another thing it tells me.
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Offline thenomnomnomicon

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Niceguy, go ahead and put the numbness, sore finger, and tense facial muscles up to anxiety. That is literally the only thing they could be and are unrelated to ***. The 'shakiness' you posted about isn't related to *** either.
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Offline thenomnomnomicon

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White-coating on your tongue is from poor hygiene. I have geographic-tongue. You'd really freak if you saw mine.
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Offline thenomnomnomicon

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Double-posted again. My bad. Roommate's sapping my internet.
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Offline Niceguy237

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It's only the back of my tongue that's white and it doesn't look like thrush.  My hygiene habits are good too. 
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Offline thenomnomnomicon

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I tend to get tongue build-up the more anxious I am. At my worst it was black. I also have generally good hygiene, but notice I'm more susceptible to bacterial growth-infection when anxious.
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Offline NytViolet

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Re: I am SO OVER the whole A*S thing -- making myself insane over this!
« Reply #10 on: June 07, 2014, 07:00:27 PM »
Dude!  Ya gotta brush your tongue LOL.  If I didnt' brush mine daily, it would ALWAYS have an icky coating.  BTW, YES YOUR BODY CAN BE A LIAR!  As I told you, I've had fasciculations for 17 years... can you imagine what my first year was like, because NO ONE knew about BFS at all.  I don't remember about the Epstein-Barr Virus, only that (after seeing multiple doctors for severe fatigue) a doctor who actually took me seriously said, "Aha... you have an acute EBV infection!"  I had Chronic Fatigue for 3 years which went into remission.  During my remission I began exercising like crazy to eliminate the 40 pounds I had gained... it was during this time that the physical sensations / paresthesias began.  Burning feet, fasciculations that were visible (having some right now), feelings of weakness, etc.   I'm not a doctor / nurse / or even a candystriper, but I honestly believe that we all have viruses that lie dormant in our spines, and when we're physically or psychologically stressed, it causes inflammation of the nerve endings and this leads to feelings of weakness, paresthesias, twitching, etc.  I just happen to overanalyze it because I'm so terrified of it.  Yes, they are finally starting to make some progress in reversing this illness, but if I was diagnosed I'd probably have a fatal heart attack right there in the office, so it wouldn't matter (sick humor, I know).  I pray that all of my twitchy-friends will relax and have a peace-filled evening.  I'm here if anyone needs to chat.
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Offline NytViolet

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Re: I am SO OVER the whole A*S thing -- making myself insane over this!
« Reply #11 on: June 07, 2014, 07:02:34 PM »
Two more things:  THeNomNomNOmicon, heavy white/yellow coating on the tongue usually indicates dehydration (and you MUST brush that tongue).  Also, please let us know how your next doc visit goes... you're in my prayers.
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Offline thenomnomnomicon

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Re: I am SO OVER the whole A*S thing -- making myself insane over this!
« Reply #12 on: June 07, 2014, 07:13:13 PM »
Don't worry too much about me, Nyt. One clean EMG so far a month ago (on the wrong side; I requested the other, he said it didn't matter, I don't believe him). 2 GPs don't think it's ___ and believe it's anxiety/conversion. A neuro that I didn't speak to, but a friend did who knows my situation and has explained it, didn't believe it was ___. My neuro didn't think it was ___. I'm clearly insane. The nerve pain and twitching though is horribly off-putting.
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Ph'nglui mglw'nafh Cthulhu R'lyeh

Offline thenomnomnomicon

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Re: I am SO OVER the whole A*S thing -- making myself insane over this!
« Reply #13 on: June 07, 2014, 07:19:18 PM »
I'm not gonna' lie here. If he does not believe CT is a valid reason for a second EMG. I'm prepared to pay out-of-pocket. That is how bad the anxiety over this is. $500 worth of anxiety. I wish so badly that first neuro had just done the side I requested and not been an a**hat.
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Ph'nglui mglw'nafh Cthulhu R'lyeh

Offline NytViolet

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Re: I am SO OVER the whole A*S thing -- making myself insane over this!
« Reply #14 on: June 07, 2014, 08:44:23 PM »
What is CT?  Also I've heard EMG is painful and I'm terrified of  having one. 
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

 

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