New Member: My Story

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New Member: My Story

Postby silver_pilate on March 5th, 2013, 11:10 pm

Hello everyone, I've been perusing this board for a while, but I just now joined up. I thought I would share my experiences.

I'm 34 years old, and I'm a physical therapist specializing in neurologic conditions. I teach doctor of PT students neuroscience and neuro-rehab among other topics full time, so I started this whole process knowing WAY too much. :D

In February of 2011, my wife and I had a baby. About 2 months later, I NOTICED twitching. I think I had probably been twitching a month or so prior to first paying attention to it, but I clearly remember when this whole fear/anxiety thing started up. I was in my office working on a lecture when I experienced a persistent fasciculation in the side of my thumb. I'd always noticed random twitches throughout my life and thought they were kind of funny little events, but this one hung on for hours. The problem with me, is that I know ALS. Heck, I teach it to students. I've watched patients die from ALS. "Oh my....do I have ALS?" The rational side of my brain should have kicked in right there, but we all know that this is not a rational condition. That night and over the subsequent several nights, all I could focus on was twitching. I was so focused on my body that I could feel every heart beat in any area of the body I was focused on, and of course, I had twitches EVERYWHERE. All the time. Little twitches, big twitches, vibrations, possibly imagined twitches. The more I focused on twitching, the more I had. :) Senseless and irrational anxiety ate me alive. If it was me on my own, I don't think I would have been as amped up. However, all I could think about was not being there for my wife and son. I started manual muscle testing myself, which of course, made things worse. I had colleagues muscle test me. I tested myself for upper motor neuron signs. I felt weak. I started focusing on my gait: "did I just catch my toe?" I had a hard time holding my arms up. I had issues with my throat when swallowing. After stringing myself along for several months, I finally talked to my doc about it and pursued an EMG. I went to a doc who is a personal friend of mine whom I've worked closely with through the years, and he did my EMG/NCS, talking me through what he was seeing and the results as we went. Of course, at the appointment, I had not a single twitch. :roll: He tested throughout the lower and upper extremity. Everything looked normal. He told me he wasn't sure what was going on with the twitches, but I didn't show any signs of anything concerning. Funny thing, after that appointment, my twitches all but disappeared....for a time.

Since that first bout, I have a "flare" of symptoms every 2-3 months that lasts for about 2 months. These flares typically start when I notice something different than I've noticed before or when a particularly bothersome twitch shows up. Every time a flare starts, I start up the irrational anxiety and the fear of a nefarious disease. Here are a list of symptoms I've had over the last two years:

-Twitches, thumpers, vibrations occurring randomly or for up to 2 weeks at a time in a specific location
-Twitches in these areas at various times: foot, toe, calf, quad, hamstring, abdominal, shoulder, arm, hand, fingers, neck, corner of mouth, eye, lips, tongue
-Twitches at rest, twitches that go away with contraction, twitches that start after contraction, twitches that continue during contraction, twitches that start with certain pressures or postures (i.e. arm resting on the edge of desk results in hand twitches)
-Anxiety related throat issues: globus sensation, subjective difficulty of swallowing food on either side or in general, tightness in throat and base of tongue, sensation of aspiration of fluids (funny thing...also had bronchitis at the time but my mind refused to see it as the obvious cause of coughing)
-Severe health anxiety and fear of ALS
-Feeling like I'm fumbling over my words in talking
-Deep aching pains randomly in various muscles, usually in the thenars/hypothenars and arch of the foot
-Feeling of tightness in gastroc
-Subjective weakness of arms/shoulders, hands/grip, thumb, ankle, quads
-Crawling sensation on my face and scalp (probably due to chronic hyperventilation during anxiety flares)
-Overwhelming fatigue at times
-Difficulty concentrating or enjoying life
-Fear of and "discover" of muscle differences and asymmetries ("Oh no...am I wasting there??")

I'm sure there are more to list, and I've actually thought about logging my symptoms in a journal to reassure myself. I always seem to freak myself out, even though I've been through all of these symptoms multiple times without issue.

A few theories I have.... I had psoriasis as a kiddo. I have occasional flares of very mild psoriatic arthritis. My twitches tend to follow along the timing of arthritis flares. Could this be a systemic inflammatory process leading to this peripheral nerve hyper-excitability/irritability? I also have GI issues and severe reflux. I know this contributes to my throat symptoms which often result in a bout of anxiety. I've also read it's a common issue among those with BFS. I am worse when I don't get enough sleep over multiple days. When I can get 8-9 hours of sleep a night, I do much better.

Here's the bottom line. I've been twitching for 2 years. I have no more "weakness" or other signs than I did when all of this started other than the occasionally relentless anxiety and random "new" twitch or symptom I've not had before. I know the "big one" is a relentlessly progressive disease. It does not appear like this. It does not jump around all over the place and start and stop randomly. Heck, statistically half of all patients with it would be in a WC or deceased at 2 years in, and I'm still kicking along. My flares start with a twitch, progress to anxiety, perpetuate the twitch and other symptoms, and then usually fade when I can come to the point of dismissing the fear. This is an anxiety disorder as much as anything. Funny thing is that I read somewhere many people who suffer with BFS are highly educated or even in the medical profession. We know to much, or we look up too much. Joe Blow who starts twitching while working in the field probably just says, "huh...weird" and keeps on with his life, never having a problem. We spend hours on the internet trying to find anyone else whose had EXACTLY the same symptom that we're currently experiencing in an effort to reduce our fear. We look up disease processes just to find any similarity so that we can perpetuate or alleviate our fears.

Do I still fear the big diagnosis even though I really know better and have had a clear EMG? Absolutely. My wife wants me to get a followup EMG to compare to the baseline for her peace of mind and my own. I hesitate to do it, because I know it will spark a new onset of anxiety leading up to it. Ultimately though, I'm here. I'm still twitching. And I'm still alive, apparently no worse for the wear. I'm educated enough to know what ALS looks like, but I still irrationally fear it. I have to remind myself: my God is a not a God of fear and bondage to fear but a God of freedom.

May all of us find freedom from the fear that binds us up so tightly.

God bless,

--Nathan
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Re: New Member: My Story

Postby Yuliasir on March 6th, 2013, 1:43 am

Nathan,

you probably answered your own questions well. BFS strikes medical professionals about 3 times more often than people of other occupations (due to stress level and knowledge load). You have authoimmune condition. That is a good proven basis for having twitches as part of general reaction. You note correaltion between arthritis and twitches.

Most of other symptomes really point to stress and anxiety which are our companions in that journey, and they do not differ from those of most of our fellows here.
Even persistent cough often appears to be a GERD related issue and often strikes anxious people making them fearing of TB, lung cancer or whatever else...

Hope I can calm you a bit

Hugs
Yulia
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Re: New Member: My Story

Postby mwagner on March 6th, 2013, 11:24 am

This post truly exemplifies the journey we have all been on. I am almost 2 years into this myself, and also have irrational fears/anxieties when any new symptom pops up. I have also kept a short journal and "rating" my twitching for the day, and see many ups and downs to this.

The question is - how do we stop this underlying anxiety from affecting our lives? There must be a way, but I think few of us have found it. You are a perfect example - two years, you rationally know that you are fine, yet you still fear. Why do we still fear? Is it the nature of the disease that we all fear?

Anyway, glad you shared your story. You are such a classic BFSer - there is nothing at all different from what you have experienced, than most of us have. Also, don't get the follow up EMG. There is no need. Somehow you need to let it go, and accept your BFS.

Mitra
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Re: New Member: My Story

Postby jcmommie on March 7th, 2013, 10:55 am

Hi Nathan,

Absolutely health care professionals suffer more with generalized health anxiety, or a specific problem if we have symptoms, then look up those symptoms online. I am a nurse in my early 40's. I have been dealing with MND anxiety for 4 years. Four years ago (during a huge period of stress in my life) symptoms of twitching, cramping, globus sensation came about and I made the mistake of researching it. Our irrational minds skip over the fact that MND doesn't come on so widespread, and it also doesn't travel around the body randomly. But I'm sure we all have said, "I am the exception. It is just presenting differently, and it will eventually reveal itself." Thus, all the repeat doctor visits, EMG's etc. Every EMG, MRI, and clinical strength test has been normal. However, because of the anxiety, we cannot trust those people who are very qualified to say they see nothing of concern.

I am dealing with a new problem in my left foot. It is probably lumbar-spinal compression nerve-related, but guess where my mind went first? Where my anxieties still lie? Yep. It is a process, sometimes a continuous struggle to keep the anxiety in check. Journaling is good. A good counselor can really help--someone objective. Moderate exercise. Some people (like myself) need an antidepressant/antianxiety med to help bring perspective in charge instead of panic.
Just keep swimming...
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Re: New Member: My Story

Postby twitchsenc on March 7th, 2013, 11:45 am

Thanks for sharing. I hope your story is reassuring to others and it is to me.
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Re: New Member: My Story

Postby Lasszucken on March 8th, 2013, 4:42 am

Welcome Nathan.

Your story sounds like many other stories, even like mine ,I'm no medical professional though, but I knew ALS from before (an episade of Stargate Universe) and learnt about it again when it started while looking for MS, and some posts mentioned ALS, that was when my real anxiety kicked in.
I'm twitching a year by now and I asked my neuro two weeks ago what I would like if it was the nasty thing.
He just said: "If it was it, and it is not, you would have severe disabilities by now. My last ALS patient died within one and a half year."
Like you I'm twitching everywhere, calfes 24 hours a day usually, with some random twitches everywhere else. I do also have funny sensations on my face, lips, like a midge or alike crawling on the skin.

Greetings,
Lasszucken
Twitching since about 1st of march 2012..
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Re: New Member: My Story

Postby Spidermonkey on March 8th, 2013, 11:28 am

Nathan,
Your story sounds familiar in many ways.
Try to stay objective when thinking about your symptoms. The symptoms are the same as me and hundreds of others on here. While creating history is pretty cool, I don't see you being the first person ever to have undetected ALS in this way :-).
Treat your wife to a glass of wine - like mine, it sounds like she needs it...

Rob
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Re: New Member: My Story

Postby kacmins on March 10th, 2013, 6:08 am

I am glad I ran into this post - it's really amazing how similar my symptoms are. If you do have some condition, like arthritis etc, I am sure I have it to. There are couple of things I experience as well, like the pain in the thenar muscle/arch of the foot, vibrations, postural tremor, body wide twitches, subjective weakness etc. My problem is that these symptoms are fairly constant last 2 months, but they do get better from time to time (luckily!).

I was diagnosed with carpal tunnel syndrome in early december and my life has been a nightmare since then. 2 months of being sure I have MS and now last 2 months I convinced myself of ALS. The EMG in December didn't help at all - that's how they diagnosed the carpal tunnel syndrome, but I also had fibrilation potentials in one muscle (they tested only my arms). My Neuro thinks I should see a shrink, but since I am convinced it's ALS she referred me to best neuromuscular specialist in my area. Still don't have balls to schedule an appointment :(
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Re: New Member: My Story

Postby silver_pilate on January 28th, 2016, 11:04 am

I'm digging this old thread up that I started. It's 2016, nearly 5 years after all of this started, and I'm still plugging along. For largely the last 2 years or so, I've not had any issues. Sure, I twitch randomly as just a part of daily life, but I've been able to push on through short stints of anxiety and keep on living at a fairly high quality of life.

Going on day 4 now, I've had a rapid twitch in my left thumb adductor (between the index and the thumb). It is nearly constant through the day, it twitches in the exact same spot on average 1-2 times per second nearly constantly, but I can usually change arm position to gain a brief respite. I still have the same random twitches all over that I've had, but now this new hot spot. And guess what? Back comes the anxiety. :D :lol:

I guess it's been a while since I've had a bothersome hot spot other than a random eyelid or tongue twitch that lasts a few days (had an eyelid twitch last several weeks :roll: ). However, for whatever reason, I've let this one bother me more than most. Perhaps it's because it's so continuous and rapid and "different". On the rational side, I know I have longstanding ulnar nerve issues, and this all started with resting my chin on my hand with my elbow on the edge of a hard table in an ulnar nerve stretch position. And yes, the adductor pollicis muscle that it twitching is innervated by the ulnar nerve.

But you guys and gals know how it is...common sense be damned! Anyway, hope everyone is doing well.

--Nathan
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Re: New Member: My Story

Postby Strive on January 30th, 2016, 7:52 pm

Hi Nathan,

Sorry to hear about your new hot spot. It sounds brutal. You of course know that if something bad was lurking it would have been obvious many years ago. I actually found your post quite reassuring, so many years down the road and still nothing but twitching. Hot spots are the worst but you wouldn't have to look far on this board to find many other BFSers with the exact same hot spot now or in the past. Stay strong!! It'll settle down eventually!
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Re: New Member: My Story

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