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

[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

[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]

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.

[4t1074]

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

[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?