Just turned 38 - Father of 3 scared as hell of ALS.

About me:

I just turned 38 on Saturday, married with 3 children and somewhat overweight.  I work as a media designer and so I'm never not at the computer for less then 60+ hours a week.  I've had restless leg for almost 7 years off and on (just uncomfortable... no twitch) I've been dealing with a considerable amount of terrible stress worrying about ALS or MND.  Professionals, please advise as to your own opinions.

My first fears started with twitching.  In mid-September I had cycled on a weight-loss supplement without a great deal of caffeine.  Two days after cycling on it I noticed my thumb and index finger twitched several times while working at the computer and felt restless when at rest... I didn't have any revisiting of these symptoms until 3rd week of November, the day AFTER I cycled off of them.  In this case however the twitches did not just go away... I had them till about the first week of December.

The Last week of November I went with my wife to see a neurologist.  He could tell right away when he came in I was nervous and distraught.  He did the full neurological exam but did not recommend an EMG or NCT, he spent 20 minutes with us talking and trying to put my concerns away about my hand twitches.  These hand twitches primarily only occurred when my hand was in a few similar positions and not at rest.  Primarily when I was at my computer... He said that I do not have ALS, MS or Parkinsons.  I might have essential or benign tremor but that it would probably be far worse with anxiety and stress.

When I left the first Neurologist I was at ease and noticed that i didn't feel any need to twitch.  Like all symptoms went away temporarily perhaps just from his words.  The twitches, as I stated, did come back till I think I had a day or two of little stress.  They primarily have not returned as they did when I first noticed them... I did TRY to take the supplements again last week for 3 days and realized that I shouldn't have because of the caffeine... I felt that restless feeling again in my arm.

I felt intermittent pains in weird places like end of elbows, inner-sides of knees and under the ears on back of my neck.  Additionally some pain in shoulders.  I have had one or two noticeable twitches in each arm in either bicep or triceps.  I have done the paranoia thing... grabbed my 30 pound dumbbells and curled them and pressed them over shoulders to compare the strength to each arm, bought those hand exercisers.  The only thing I noticed in November when I bought the hand exercisers is that one time I had in increase in those right hand twitch for a few days.

I have been in the ER twice extremely worried.  With the intermittent pain in the pads of my hand and wrist my family prac had wondered if I had Carpel Tunnel.  He sent me to a second different neurologist for a NCV.  This Neurologist apparently is well known as being extremely thorough and sharp.  So I waited until last week.  During that time I had noticed actual tremors and shaking when I'd hold a book at different times or I was REALLY uptight...primarily in the right hand but also in the left.  I must admit that I feel that since these twitches showed up I've become a hypochondriac and i'm worrying myself sick.  I have read that twitches without perceived weakness or wasting is primarily a sign of no ALS.  I've also read that twitches are not, in themselves, a sign of ALS and they almost never start that way?  If I had weakness, other then the fact that I'm somewhat out of shape I wouldn't know.  Again, I work like crazy and never get tons of sleep... always running.

Last week I saw the second Neurologist for the NCV.  My wife and I went in and as we went into the exam room and he prepared to tell me how long the test would be and put the electrodes on me he wanted to talk with me for a minute.  He could tell I was distraught.  After talking with me for about two minutes he took the electrodes off and said that he really didn't think that we needed to do the test at all... if anything he thought it might be worse.  He did the same Neurological screen that the first had done then sat down and told me the SAME EXACT THING that the other neuro did.  That he was almost certain that I didn't have ALS, MND, MS or Parkinsons.  He wanted me to try and relax and enjoy life.

In the past week i've also noticed my pinky get into a certain position while holding my wife's hand and it literally vibrated twitched for a few seconds.  It was in a weird position when it happened... similar as to how I would get the twitches on the computer which would only occur in certain position.  When I moved I could make it go away.  I've also noticed a kinda "pins and needles" on my right arm and leg fleetingly and now more only on the top of my right leg then on both.  Today I noticed for the first time a twitch in the lower left palm for a few seconds while at the computer and when I moved my hand it went away.  Then also tonight experienced twitches in both upper thighs and buns for sec while laying down right after work. Its almost as though I worry so much about weakness, and not being in the best of shape, its hard to know if I have weakness.  I can play piano and type and such just fine in both hands but the only time anything becomes difficult is when i'm worrying or experiencing high-anxiety.

The new twitches scare me so I go in phases... I asked my family prac for some zanex today, which they gave me in the ER my first time and helped to calm me.  The hand tremors certainly go away and I can't be positive but it might help with the twitches.  When i'm relaxed it definitely helps.  I certainly don't have these things all day and the right hand almost never twitches now and I don't have that restless feeling but I've had these other weird twitches in arms/hands and now legs... more so in right leg.  Yes I've worried about bi-lateral/lateral spread of ALS.

Additional note... My sister two years younger then me said she noticed exact same fingers twitching and tremors when holding books or scripts and it lasted for several months then went away.  It frightened the heck out of her as well.  Both her and my mother and many men and women on mom's side have been diagnosed with Fibromyalgia?

Please provide me advice... This thing is tearing my life apart.  After seeing 2 Neuros, 2 ER docs, a rhumatologist asking me questions at the ER, and seeing my Family Doctor twice about this they ALL have said that they think, if anything, its benign or essential tremor aggravated tremendously by my stress from normal life and my high anxiety and fear from obsessing about ALS.  Neither neuro even mentioned doing an ALS after examining me and both tried their best to put me and my wife at ease... no just running out of the office.

Am I just nuts and need to wake up and listen to all the advice?  Should I really presume that this is undiagnosed BFS.  I've never had ANYTHING come into my life and just flip it upside down by paranoia but its because I have never experienced anything like it.  I've wondered if what little worry I have of weakness and some of the intermittent symptoms is psychosomatic?  Any advice would really help.  I truly appreciate any advice from professionals specifically.  Thank you so much!

[Londres70]

Take a deep breath.  :)

I am not a physician, but an RN with a Master's degree and have experienced the same problems you have.  In my opinion, I believe you have BFS or ET.  Mine all started when I was under a tremendous amount of stress; I had moved to France, got married and got 4 stepchildren in the process all in a year.  WHOA!!!!   Talk about bad nerves.  :)   When it first started to happen, it freaked me out too.  I finally got a diagnosis of BFS.  Another possibility could be the problem is stemming from your spine; i.e. slipped discs.  I noted the amount of time you spend at your computer and I would not be surprised if you had a problem with your cervical spine.  Other possibilities could be RLS, Fibro.  I would have to rule ALS completely out.