JDMez

Body-wide Muscle Twitching

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Hi all,

First post for a long time lurker.  Just want to say that everyone here is so helpful and supportive.  You all help to put peoples minds at ease and help the healing process a great deal; absolutely amazing!

I apologize for the lengthy post; however, I want to make sure I don’t leave anything out.  

I’m a 32 year old male.  I’ve always taken care of myself.  I’m a vegetarian and have been for most of my life. I’ve never smoked and only have a drink every once and a while.  I’m pretty active and get a lot of exercise in.  I am happily married to the best woman in the world, and we just welcomed our baby girl to this world a few weeks ago.  I really can’t complain about anything, yet am dealing with a pretty bad case of health anxiety that is giving me a great deal of grief.  I will admit I have always had some varying levels of health anxiety and undiagnosed OCD, but nothing ever debilitating or that I was not able to cope with.

Roughly three or four years ago I made an appointment with my PCP for tingling in the legs and digestive issues.  Both appointments checked out and I was told that the symptoms were related to anxiety.  Around this time I had a prostate infection and was given a log dose of antibiotics.  In November of 2016 I had a tick bite.  The tick was somewhat embedded and he spit a little red.  I removed the tick and was given a one day dose of antibiotics. I didn’t notice any symptoms resulting from the bite.

Fast forward to spring 2017, my wife and I had a lot going on.  We purchased our first home and were doing major renovations that were adding up quick.  Me, being the perfectionist that I am, became obsessive over every last detail.  In the end everything came out great; however, I started noticing muscle jerking while at rest.  Around this same time I was dealing with one of the worst sinus infections I have ever had.  A moldy air conditioner didn’t help the issue.  Lots of pressure and swelling, but no mucus when I would blow my nose.  This went on for weeks and weeks, and I was given another long dose of antibiotics to try and get rid of it.  

Now here is where my main cause for concern starts; this is my reason for posting.  While dealing with all this, I began to notice muscle twitches in mainly my calves.  The whole muscle wasn’t moving, just little pops here and there, but pretty constant.  Of course I took to doctor google and came across ALS and MND.  I became both obsessed and scared.  The twitches quickly became body-wide - little pops and twitches in my legs, arms, face, back, and eyes.  You name a place and it’s twitched.  I was also getting hot spots that would twitch pretty much non-stop for days/weeks at a time.  Sometimes it felt like a fish was flopping around.  I also noticed that it seemed to happen after use or strain.  For instance, if I were holding my thumb up to text for a while, the thumb pad would start to twitch.  I’ve also had it where twitches in my hand and arm were causing fingers to move. There was a weak, rubbery feeling in certain limbs that would come and go.  I felt very tight and tense, often catching myself holding my breath. I just couldn’t get this fear of ALS out of my head.  I was spending a lot of time on the ALS and BFS forums, constantly reading and researching everything I could.  The fear was taking over, feeding my health anxiety.  I had my first ever panick attack, which was very scary.  I made an appointment with my PCP to discuss the twitches and my fears.  A series of blood tests were done and a thorough examination was given.  Everything checked out and I was told these symptoms were a stress reaction to everything that was going on at the time and that focusing in on them would only make it worse.  I was also told that these twitches didn’t exhibit typical ALS type twitches.  My mind was eased, but that calm did not last long.  Each twitch  was a constant reminder that somethin wasn’t  right - this isn’t  normal.  I made a follow-up appointment a month or so later and again received the same answer.  He spoke mainly about anxiety.  I told him I was anxious and that the fear of these twitches were feeding my anxiety.  He recommended I see a neurologist, mainly for my peace of mind. 

It was roughly five to six months into my twitching that I saw a local neurologist.  She conducted a thorough exam and kept saying, “benign...it’s all benign.”  She was so sure almost instantaneously.  I wasn’t twitching a great deal at this visit and she didn’t see many of them in person; however I did have some videos to show her on my phone.  Again, she just kept saying, “benign...this isn’t how ALS acts.”  For my peace of mind she conducted a body-wide EMG and nerve conduction study.  Everything was clean and she hoped my mind would be at ease.  

Due to the tick bite I had a year or so prior I had thorough line testing done.  I came back positive for only three bands on the western blott (you need five to be lyme positive) and was above normal for a parasite called b. duncani.  I shared the results with my PCP and this was discounted.

As the weeks and months went by I became content and accepted that this may all be related to anxiety.  I was good for quite a while, still twitching, but not as much; however, I have recently fell back into the rabbit hole.  I am now twitching fairly bad all over and the fear is setting in again.  It has been a total of 17 months from when I first noticed these symptoms. I have been twitching almost everywhere, even my tongue occasionally, which scares me.  

I guess I’m looking for reassurance.  Is this anxiety?  My OCD causing me to focus in on every twitch or sensation?  If it is anxiety I feel like I’m anxious because I twitch and I twitch because I’m anxious.  Do any of you experience this?  If so, is it constant and body-wide?  Do you have hot spots that last for a while?  I guess I’m just scared that this could be something more.  In my mind I keep second guessing everything.  I just hope this isn’t you know what.  I think about my wife, new daughter, pup, and family...I have it made.  I love my life and I just wish all this would go away.  

Again, sorry for the rambling, but wanted to include antibiotics and lyme issues as well.  Any thoughts? 

Thanks to you all for creating such a supportive community!

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Hi JD,

Youve had all the testing and expert evaluations to rule out serious problems, yet it appears you haven't treated the diagnosis you did received..anxiety. In 17 months you'd be dead or terribly disabled, so you have to put that thought away. 

Lots of similar posts over the past few months. Might want to read them instead of Google. Everything that needs to be said to you will be found in those posts.

Please invest in therapy, for the sake of your wife and darling baby, if not for yourself.

Bob

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3 hours ago, Bobnnat said:

Hi JD,

Youve had all the testing and expert evaluations to rule out serious problems, yet it appears you haven't treated the diagnosis you did received..anxiety. In 17 months you'd be dead or terribly disabled, so you have to put that thought away. 

Lots of similar posts over the past few months. Might want to read them instead of Google. Everything that needs to be said to you will be found in those posts.

Please invest in therapy, for the sake of your wife and darling baby, if not for yourself.

Bob

Good advise from bob. And another thing to remember is twitching starts when muscle is dieing. And total failure to do something.  Like pick up a baseball. And even that doesn't guarantee you have als.  Put your mind at rest and enjoy your little one. Just think of the time wasted. I had missed out in alot of fun because of this illness.

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