Two Year Update

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Two Year Update

Postby pdodge715 on August 1st, 2014, 1:16 am

Hi everyone,

I don't think I have posted since my 1-year update... for me, coming back and perusing the forums - seeing the A-word 30+times per page - really ramps up my anxiety. But, I passed my 2-year twitchaversary about a month ago, and I found myself thinking of you guys tonight and wanted to share an update...primarily to add to the stockpile of reassurance for new twitchers. For brevity's sake (LOL - brevity...look how long this is!!), I won't give my whole background here - but it is readily available in my post history. Herein, please suffer through as full an account as I can muster of the symptoms that currently afflict me - and bear in mind - I'm two years in, perfectly mobile, and very much alive. For demographics' sake, I'm a 28-year-old male...twitches started a couple weeks ahead of my 26th birthday.

I still twitch, constantly. My legs twitch literally every minute of every day - sitting here, I can't count more than 5 seconds between fascics. I get twitches in every other part of my body, too (yes, even tongue - and yes, even that has been twitching for most of the last 2 years), but nothing is constant like my legs. Fascics are worse after exercise. Tongue-twitches are exacerbated by large quantities of caffeine. Sometimes my twitches will be little flicks out of nowhere; and sometimes I will get big "thumpers" in a certain spot that will stay for days-weeks (most common in arms/legs/back). Even my feet and toes and hands and fingers twitch - this is one of the more annoying ones, because I've closed out of God knows how many windows unintentionally due to a finger-spasm on the mouse button.

I am clumsy. This gives me some off-and-on concern because I know I have been clumsy all of my life, but I can't help but wonder if it's gotten worse over the last 2 years. I drop things - sometimes I will pick something up with a bad grip and lose it, other times I will just straight-up drop whatever I am holding. I have awful balance - I have NEVER been able to pass one of those balance-self-tests for MND you find on the internet, and sometimes I will be walking straight down the hallway and veer sideways into a wall.

Joint Problems
I have developed joint problems due to muscle issues, but these do not appear to be related to the fasciculations at this point. This is most pronounced in my hips and began just over a year ago. They started grinding and cracking in certain positions, and now they grind and crack in just about every position. This is also now present in my shoulders, wrists, etc. The general consensus (from my GP, a PT, and my wife who is an Occupational Therapist) is that my desk job coupled with inadequate stretching/exercise have caused some muscles to shorten over time due to lack of use. I am trying to get in the habit of doing the stretches the PT and my wife have prescribed, but I am not an obedient patient, I must admit.

Head Rush
Sometimes, when I stand up from sitting, I get a head rush so bad that my vision blacks out and my balance fails me to the point that I have to grab something to keep from falling down. I don't know why this is, and it's only been for the last couple of months. My wife believes it to be related to a HUGE Diet Coke habit (6-10 cans/day) I developed when I quit drinking alcohol 6 months ago. I essentially quit the soda a week or so ago, but have still had a couple of these spells since. I have yet to speak to a doctor about it.

I am very fatigued all of the time. This has been for as long as I can remember, and has not worsened noticeably over the last 2 years. Testing has shown that my thyroid and general blood work are normal. I have declined a sleep study due to the profane expense, but do snore violently. I also have a very high intake level and subsequent tolerance for caffeine. At work, I will usually have 48-72 oz. of coffee throughout the day - and sometimes throw in a Red Bull if I'm especially dragging. I'm sure this is, at the very least, not helping the fatigue. However, I will say that I quit caffeine altogether for ~2 months with no improvement in any symptoms.

Coldness, Pins & Needles
My extremities are always frigid and occasionally tingly. In fact, my first neuro couldn't even get a read on the surface temp of my feet with his adhesive-patch-thermometer thing. My GP blames the coldness on poor circulation due to height (I'm 6'5"), and the tingling has been previously alleviated by chiropractic adjustments.

I occasionally feel that I slur my speech. I am left to deduce this must be at least largely imagined, because every time I have articulated this concern to a doctor, their reply is: "Well you're clearly not slurring now, are you?" Nonetheless, I can't shake the feeling that my tongue is sometimes too thick for my mouth, or moves sluggishly. Indeed, I do fumble over words frequently - but I spontaneously developed a situational stutter during a panic attack 12 years ago and have yet to overcome it.

Jelly Legs
My legs feel very tired and wobbly all of the time - particularly in my lower-inside thighs. I and others have described this as jelly legs - the sensation of just having run a far distance... very accurate. However, this is not to say they are functionally weak. I can walk or run several miles without anything beyond what you would consider normal fatigue.

My muscles cramp easily and often.

Testing, Diagnosis, Comorbidity, and Speculation of Origin
My official diagnosis is BFS - conferred upon me by my 2nd neurologist maybe 20 months ago after an early clean EMG (done 3 weeks into symptoms, July 2012), normal bloodwork, and several physical evaluations. I have Generalized Anxiety Disorder, for which I take Xanax as needed; and I have GERD, for which I have taken 30-60mg of a proton pump inhibitor daily for over 10 years. My Mom found some research indicating that long-term use of PPIs can lead to low magnesium levels, which - as you may be aware - can cause muscle fasciculations. I asked a Gastroenterologist for a urine test of my mag levels (urine is said to be more accurate than blood) - he insisted on the blood test instead, and my results came back at the literal lowest point of the "normal" spectrum. He said I would need to see a renal specialist if I wanted the urine test, and I have yet to follow up on that. I do take an over-the-counter magnesium supplement, but have seen no improvement.

I initially thought that alcohol could have played a part in all of this... I was a serious daily drinker for 10 years, and even my neuro thought that maybe my theory could hold some water. However, I sobered up on February 7 of this year (6 months next week), and have seen no improvement in my symptoms.

I do believe that my anxiety plays a significant role in my symptoms - if it is not the origin, it is at least an agitator.

I know I do not have the A-word. Like, for certain - not just in a denial-for-reassurance way. I'm 2 years in and not only am I not in a wheelchair, but I just ran for a bit and lifted weights before starting this post. Moreover, the first neuro I saw (for EMG in July 2012, 3 weeks into symptoms) gave me a specific strength test to do and said if I could still perform it in 3 months, I could rule out A**. Well, it's been 2 years since that appointment and I just did it now for giggles and grins. (Walk across the room on your tip-toes, walk back across the room on your heels. Doing this without the other end of your foot flopping down = success).

I do, however, occasionally wonder if I have MS. This may be my hypochondria rearing its ugly head, but a lot of my non-twitchy symptoms do fit the bill, and I've never been tested to rule it out. All of my doctors have dismissed the notion of it through this whole process, but I may ask my GP for an MRI just for my own peace of mind and to bring more comprehensive closure to my twitching. I'm not even stressed about that possibility, really - that's the one positive thing about an A** scare - it makes anything else seem like a walk in the park.

Most importantly: my marriage is the happiest it's ever been; I have a beautiful, intelligent, hilarious 16-month-old daughter; and my wife and I bought our first house this spring. I haven't seen a doctor of any sort in a year or so, and life is truly beautiful - twitches and all. I don't have A**, and if you're here reading this, I'm pretty darn confident you don't either.

Thank you to anyone who made it down this far, and thank you to this community at large for getting me through what was honestly the most difficult and troubling period of my life so far.
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Joined: July 10th, 2012, 11:46 am

Re: Two Year Update

Postby Nytviolet on August 2nd, 2014, 8:35 pm

Much appreciated! You probably won't see this until 2015, but I read every word. I'm in the horrific "diagnostic" nightmare right now where I drive from doctor to lab to doctor to imaging center and on Monday 8/4/14, to a neuro. I pray that my posts on here after 8/4 will be happy ones! Congratulations and enjoy your daughter!
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: Two Year Update



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