ALS or something else

[4t1074]

32 Yr male.  Had prob with my throat for years and have not felt good for sometime in general.   Muscle twitching started, all over in all muscles below head at random. No atrophy or weakness. 9-26-06 went to see neuro, very concerned about ALS. Stated was not, No weakness/atrophy, reflexes good, neg bab. Put me on effexor-made me feel weird.  Went back to neuro 5 days later, very high ALS anxiety, due to feelings of my throat (feels like something in it), still swallow & breath easy, have to clear throat alot.  Bottom lip numb, speech different, noticable by me only, have to wipe spit off my lip all time now.  Put me on Lexapro, and he perf. a very short EMG in my left: arm, shoulder, hand muscles, he stated it was "quiet", so he didn't need to go further to my legs. Brain MRI - Neg. I have since went for op. w/ 2nd neuro, he looked at my upper extrem and feet, no weakness, no atrophy, stated in all his years in practice, everyone that pres to him with ALS, that by the time they got to doctor, the exam would have found weakness/atrophy. come back in 3 mos. I am now at a loss, because i feel very bad all the time, my twitches are still here, but have decreased, but are more focused in left arm,right thigh/leg, with occ. other places. My legs now feel if electricity is in them with "very rapid light twitches" ever 2 min in rt thigh. My rt. calf & lft arm area is sm than opposite. I have "attacks" where fingers cramp and back muscle is tight and severe fatigue. I still feel horrible all the time . What is yr opin on above and what should my next move be. I'm still conc w/ ALS

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   From the symptoms and story that you have provided, I do not suspect that you have motor neuron disease (ALS).  However, it is clear to me that you are very anxious, and in need of an expert opinion.  In rare cases, motor neuron disease may present with bulbar symptoms only (voice changes, drooling, problems swallowing).  This can be assessed with an EMG of the laryngeal muscles (cricothyroid) (usually only done by selected experts).  I suspect that your symptoms of fatigue and twitches are possibly related to a viral infection.   Benign fasiculations (tiny twitches in muscles) are often found after a viral syndrome, after exercise, and in normal people.  Fasicualtions can also occur with metabolic disturbances, muscle diseases and ALS, but are only bad when they are seen in association with other changes (weakness, atrophy, etc).  In your case I would suggest you see an ALS expert at a mjor academic hospital to provide you with confident reassurance of your heatlh and to address any further tests that may be needed.
I hope this has been helpful.

[4t1074]

Dr., I don't know if you will see this thread, but i've just noticed that it looks like i have tongue atrophy, or the teeth marks, on both sides.  Also, i think it's undulating.  I've have problems with my throat for sometime, haven't noticed difficulity swallowing, but like a lump in it.

[johnflox]

What drugs have you taken in the past to treat your throat problems? Any antibiotic?
If you have taken cipro, levaquin, avelox, or similar ones then your symptoms could well be a delayed reaction to them, that can show up up to several months after taking the medicines.
There are dozens of other drugs that cause symptoms like the ones that you describe, that persist long after the treatment has been completed, for instance, most antimalarials, some inmunosupressors, and many more.
First of all you have to discard that you a negative reaction to a drug is surfacing now.

[4t1074]

Thx, John,

I've recently taken Advicor, for high Cholesterol, but got off, specifically due to the twitches starting up.  It seems it triggered this, but Neuro stated that usu. symptoms quit after getting off of them.  Haven't taken antibiotics in a while, but don't remember taking any you mentioned.  Thx for your response, but this is driving me nuts.  I've done all sorts of bloodwork and all came back negative.  Lyme is neg.  The throat problems have been on and off for about 10 years, but in the month have consistently stayed bad, like i've got a lump.  Now bottom lips numb sometimes and it's like i'm having little attacks.  My Neuro states they are panic attacks and i showed him my tongue, but didn't seem concerned?  Today i research the tongue atrophy, it appears i have teeth marks, but tongue looks the same and it looks like i have the "waves", but could just me making alot out of the symptoms.  I did ask my Nero to refer me to a specalist, and he seemed really offended?  What do you think my next step should be, i'm really concerned?

[4t1074]

Been of of the Chol meds for about a month now.  I was only on them for about 4 weeks.

[lat67]

Hi,

Sorry to hear of your troubles.  Just wanted to offer you my two cents worth.
I have had tons of muscle twitching for two years now along with fatigue, electric like shocks in my legs and other neuro stuff.  I was convinced I had MS or ALS.  I have had every test know for both of those diseases and nothing has ever showed.
Long story short I have been dx with Lyme disease and am being treated.  All my testing was negative until I went to A specialized lab in California for testing.
Lyme is very contraversial and it can be really hard to find someone to help you but it is well worth looking into.

Let me know if you want any information on Lyme.

Lesley

[4t1074]

Thanks lat, i would appreciate all the help i can get.  Due to the rapid progression of my sypmtoms, I've contacted a good friend who is referring me for a complete 3 day workup with the best expert/specalist in a houston(best in area).  According to them, i'll know whats up by the time i leave. I will accept any information you can provide on lyme. Thanks again.

[jeffro2006]

Well it sounds very similar to what I've been experiencing as well, except my symptoms are more in the limbs.  I am also around your age, and started feeling these things in 2000.  Twitches all over my body, including those tiny, slow-moving twitches, not the normal jumpy ones.  Also, very stiff muscles in certain sections of arms and legs and occasional muscle cramps in one hand and both feet.

I was super concerned about ALS for a few years and it nearly ruined my life due to obsessing over it.  Doc put me on Lexapro for 'anxiety', which helped me cope, but didn't really help with the symptoms.  After about 3 years, I realized I wasn't getting any worse (ALS progresses), so I pretty much ruled that out (and so did the neuro), and the anxiety subsided.

However, the symptoms still come and go (though I still have a baseline of them), and when they do the anxiety comes back to a point.

Anyway, keep in mind, there are others out there sharing same or similar symtoms with the same concerns, so be sure to let us know anytime you want to chat about it.

Its good to hear you got a full workup coming up in Houston.  Thats my old home town, and the medical center there is top-notch.  They should be able to tell you whats going on.  I wish I could get one of those.  Be sure to write back and let us know what they've said.  If you have contact information for the team you'll be working with, be sure to let us know.

[4t1074]

Is there some type of forum where we can chat / email, as it will be good to talk to people with the same problems?  It's consuming my life at this moment.  

I've got a friend that's really connected in the ALS / MND community, because her daughter has it. At any juncture, i would be more than glad to help anyone who was ever experienced a pinch of what i am and will let you know what the workup is and whom its with.  I don't have all the info yet, but will let you know.  I am praying it's anxiety.

[John_Madison CT]

When I was ill (viral meningitis) and not sure what I had, or wasn't 100% the Docs really knew, I obsessed over it.  It ran through my head constantly with no relief.  The anxiety this created make me even more ill.  I had muscle twitching, pain all over, head fog, shaking hands, pain behind my eyes, weird headaches....I can go on and on.

The Doc put me on Zyprexa and Paxil, in low doses, and once they kicked in (the first week was very hard), I started to feel much better.  I would not obscess over my illness and I started to think more clearly.

With the reduction in my anxiety, all these weird symptoms I mentioned above, disappeared.   In a few days I got measureably better.

The mind is very very strong at created symptoms of all kinds.  You seem to be in a bad place where your mind is running away from you, so perhaps you need stronger meds to bring it under control.  Don't be afraid to admit that there is a possibility that your symtoms are being created by your anxiety and possible depression.

[lat67]

I totally disagree...respecfully that is.

I am so sick of Doctors not getting that I am sick and that it is all because of anxiety.  I would not have anxiety if I didn't have all these crazy symptoms.
I am sure if you asked most people dx with Lyme disease they would tell you doctors tried to blame it on anxiety.

For me, at least I was strong enough to keep at them until someone finally dx me with Lyme disease.

Lesley

[jeffro2006]

I work as a computer and application trouble-shooter and its amazingly similar to being a doctor trying to find out whats wrong.  People call in and I have to determine what the problems are based on symptoms, just like a doctor does with patients.  

Half of the time, the people call in with "vague" but nagging issues that I cannot immediately put my finger on, and this requires tons of troubleshooting.  These usually end up being no problem whatsoever, or something I can't solve (which I refer to a specialist).  Over time, I really don't like to take these types of calls, as they are not that easier "here is what is going on and here's how to fix it".  I think its the same with most docs.  They don't want "vague" issues.  They want something they can solve and fix, or atleast something they can identify.

I was asking a good friend of mine (who is a MD) how he handles seeing constant people in ERs in pain, wounded, etc.  He says he eventually got numb to it.  Docs see this stuff all the time, so they eventually go numb to most of it.

[jeffro2006]

Lat,

I agree about the anxiety.  If the symptoms would go away, then so would the anxiety.

I'll be feeling great one day, forgetting about the whole ordeal, then BAMM, my hand goes into a cramp with tiny muscle twitches, or stiffness in my leg increases to where I notice it again.  Its as if something is there trying to remind me that "ohh by the way, I am not out of the woods yet..."  Very sinister, and I actually get quite angry as a result.  I just want it to leave me alone so I can enjoy life.

[jeffro2006]

4t1074,

I have the exact same effected limbs.  Left arm (hand mainly), and right leg.

I also have the one leg and one arm smaller than the other.  one of my legs is 3/4"+ larger than the other.  However the calf on the smaller leg is 3/4" larger than the other leg's calf (and is very noticeable from the back if you look for it).  The neuro said this was about normal, and the legs try to compensate.  Slight imbalances are OK (he said they look for imbalances in size about double or more than what my imbalances are).  

However, the majority of the stiffness and twitches are in those smaller muscles.   I sometimes wonder if I have some type of illness that is going under the radar (objective test wise), but not symptom wise.

I know the anxiety seriously increased the perception of the stiffness and twitching.  Since I haven't progressed, I do feel alot better mentally.  I wouldn't wish this on my worst enemy.

[4t1074]

John - At this point, i would me more than glad to accept that and get rid of all of this with a simple pill.  It hasn't been that easy.  On lexapro - 20mg.  We'll see, hopefully i'll be talking to Jeffro in 3 years, as i'm in the same boat he was.  I am positive, but like lat states, every time i have an "attack" and the symptoms get worse, it only scares you more.  We'll see, time will tell, the major problem is dealing with the issues at hand right now.

[Nervous Guy]

My friend.  I am going thru exactly what you describe and so are many others.  Clearly, if all of us who are so fixated on this dreadful disease actually had it, it would not be the very rare disease that it is.  My neuro here in NYC told me that although he sees hundreds of patients who have these obsessive worries and fasciculations, he has seen only ONE actual case of ALS in the last ten years!  And this is a neuro at a top NY city hospital.

Ask yourself why you have chosen to fixate on a horrible, incurable, rare disease.  If you work at it, you might get to the bottom of the fear.  I know that in your heart, you want to hear and believe that this is just anxiety but your brain won't allow it and that is maddening.  Believe me, there are many, many people who are going through it just like you. Of course, as RARE as ALS is, people do get it and you should do everything you can to get medical verification that you are fine and eventually, you will start to believe it.  If not, you will drive yourself over the edge with worry.  You know by now that your anxiety brings on the very symptoms that terrify you.  If it helps, I had never really thought much about this although I have obsessed on other illnesses in the past.  You too?  A friend told me about a woman he knows who has it and is quite ill.  I went home that night very upset by the story and started to wonder about the chronic cramping I get in my feet for several years now so I made the mistake of looking up the symptoms and within days of reading about ALS, I started twitching!  The more symptoms I read about, the more they presented.  THIS IS NOT UNCOMMON!  It happens to sensitive, creative and imaginative people.  Come on.  It takes a great imagination to think of the worst case scenario, as remote as it might be.  Please try to relax.  Distract yourself and when you get that horrible fluttering in your stomach, tell yourself that its just adreniline fueled by fear and anxiety and it WILL pass.  WHen it hits you in the morning, get out of bed and get busy.  Little by little, you will be fine.  Good luck pal.

[jeffro2006]

Good post Nervous Guy!

I think 4t1074 is looking for that 'key' that will allow him to atleast be able to cope with what he is going through.  Thats what I did, and couldn't find it.  Only time fixed it, as I didn't progress as ALS classically does (though still had the symptoms like crazy).

I live in a place right on the beach in SoCal, have a great job, beautiful wife, and all I could do was sit there in distress and worry.  I should have been happy, but I could not be due to those symptoms.

However, one day I finally 'accepted' that I might have a dreadful disease and went out and did the things that used to make me happy.  It was hard at first as my mind fixated, but over time, I was able to enjoy the things somewhat and the anxiety dropped noticeably, but didn't fully go away.  Atleast I was living partially.  However, as time went on, and the doctor's visits showed nothing but normal exams, the anxiety became further diminished, despite that I was still having the twitches and stiffness.

I still have a hard time now and then, but as soon as I start to fixate, I immediately try to keep going.  For example:  10 minutes ago, a coworker came up for some information.  I had temporarily forgotten I had cramps in my hand, when all the sudden it began to cramp up and twitch as I spoke to him.  I noticed it, but threw it out of my mind and kept speaking with him.

4t1074 - hopefully this helps you somewhat.  It has for me.  Its not the 100% answer, but once I find it I'll let you all know ;-)

[Nervous Guy]

AMEN!!!!!

[4t1074]

You guys are wonderful!

[lat67]

Wow...theses guys are right on the money.  It amazes me how so many people feel this way and yet we are still having these crazy symptoms.

As for me I spent two years totally convinced I had MS. I went to two neuroligists, rhumatoligist, Infectious disease etc...Every test I have had has been totally normal.  I even had a lumbar puncture and it was clear.  The worry over the disease can be worse then the disease if that makes sence.

I finally went to a MS clinic last week where a very well respected doctor in MS said there was no way it was MS.  I finally believe I dont have the disease.  Mentally I feel great about things but my symptoms are still there.

I was diagnosed witth Lyme in May which I can now accept as what I have.  Since I have started treatment I am now totally sure it is what I have because of the way my body is re-acting.

At any rate  I hope we all find answers of what we have and how to deal with it.Heres my email for anyone wanting to chat about all this crazyness.  ***@****

Lesley

[Caddy B]

Hi 4t1074

Four years ago I had the same symptoms and was eventually diagnosed with Hashimoto's. The muscle twitching became incessant and if it begins to flare now, my doctor just tweaks my thyroxine meds. Tongue symptoms are also common in hypothyrodism.

[jeffro2006]

There are many different 'things' that can cause these symptoms.  Be sure to keep that in mind.  Its up to the docs to find out whats going on, and up to US to make sure they do.

Hopefully this won't sound too harsh or depressing, but what ends up happening to those of us with symptoms is:  we lose that everyday comfort we once knew.  Now we have 'something' there reminding us of our mortality and the possible loss of the life we are used to.  

Personally, the loss of this comfort was a big deal for me for quite a while.  Good news is, I eventually came to a new realization of life, but with some strings attached.  This comfort had been lying to me all this time, telling me I was invincible and had an eternity of time left.  

I now know my mortality and how fragile everything really is.  And these symptoms are there as a reminder that we all need to live life TODAY, right now, because we don't have an eternity of time left.

If you think about it, everyone will be to this point eventually...

[lat67]

Jeffro,

Well i could not have said it any better...that is so true.  Makes appreciate things a lot more.

Lesley

[4t1074]

I had a rough day, feeling worse by the day, but xanax is now much needed help, but my figure is changing some.  I Probably need to quit looing in the mirror.  I'm scheduled for a complete workup at the best doctor / clinic in my area - Houston - Dr. Appell (leading researcher), but not til 20th of Nov, so prob by then, the clinical picture will be clear.  I've figured out that Lexapro only takes the edge off of life, but does not do a good job controlling anxiety.  You guys have wonderful stories, and i hope i'm one of them.  Life has taken a tremendous turn for me.  Jeffro, we seem to have had much of the same things in common, life is short and this only makes you look at your life, family and esp. kids and live it one day at a time, taking nothing for granted any more.  It seems all so simple now.  Let's keep each other posted.

[Baladeva]

ok This is the first shred of evidence that other people are experiencing things to the same extent that I am.

It's almost overwhelmingly comforting to hear your experiences.

Here are mine:

In January of this year I had a spiral tibia-fibula fracture. my foot twisted around about 180 degrees while trying to be a good samaritan. Then I developed Bi-Lateral Pulmonary Emboli as a result of driving for 15 hours to be taken care of by my brother. Since the Embolism, I have had CHRONIC chest pain and any further pain or breathing discomfort would send me on a trip to the ER with Intense panic. I was told that if I kept feeling chest pain after the blood thinners took effect to return to the ER immediately.

In the intervening months, I have had any pulmonary disfunction  ruled out as well as Cardio.

BUT..... about 6 weeks ago I developed Fasciculations all over the friggin place. I also have the buzzing deep in the tissue...ya know, the kind of twitching you can feel but can't see. I had the nerve conductivity tests showing deterioration of the radial nerve in my left arm ( but I've been hammering nails for 12 years) and of course in the tib-fib nerves of the broken leg. The EMG shows no muscle damage. Mri report said  something of "undetermined significance" on the right side of the brain" at least that's what the radiologists report says. My neuro says that thre's nothing out of the ordinary though. there's one to keep me in anxiety, haha. which one do I believe? the trained, tried and true neurologist or the trained tried and true radiologist!?!?!

I was tested for lyme with 2 different tests. One of them I know for sure is non-specific: the D-DIMER which will test positively if you've had an embolism recent to the blood test. (I HAVE) Are there more detailed or extensive lyme disease tests that can be performed? I was bitten by 2 deer ticks about 5 months ago.

ok this is getting long but now since even my hands now are buzzing and my left middle finger joint is freaking out and the fasciculations of my thighs, feet, thumbs, lateral muscles, and mandibular joints are becoming the dominant theme of my life, I started looking at these message boards again.

They say Anxiety but I don't walk around scared until a symtom shows up. I walk around FINE until a symtom shows up and gets hairy enough to start scaring me...

Anyway thank God that there are other people experiencing this stuff along with me