Progressive symptoms

[4t1074]

Regarding my symptoms, i've asked a question before, however, would like a further opinion based upon increasing symptoms.  Aug 06, started having muscle twtiches in legs and arms.  Had two EMGs, the first was not done correctly according to a ALS clinic (Houston Methodist) i visited on Oct. 30.  They repeated EMG and told me i don't have ALS.  Since that visit, or 8 weeks, i've started having cramps in all fingers/toes/legs.  I've lost about 1/2 shoe size in right foot.  My left arm (which was one of the first things i noticed), is now in a constant cramp.  MY fingers don't work well at times. My reflexes were "brisk" +3 accroding to the clinic. My tongue has little ridges all around it and looks smaller. My jaw has twitched and shaking severely at times. My feet are constantly vibrating and the fasics are now constant, all over my body it seems, in one muscle or another.  My right leg up to knee looks smaller than other.  I am constantly fatigued or just feeling real bad.  To date, i've seen 5 neuros and have since learned to stick with one or two with a possible second opinion.  My last visit to the neuro was two weeks ago, he didn't notice anything wrong and said this was not ALS.

I am clueless at this point and are looking for advise where to turn next.  I'm a 32 yr old male.
1) Would it be too early to request a repeat EMG
2) Does ALS  present this way, i mean bulbar and limb symptoms, almost at the same time?
3) Is there anything specific i should request in a workup and what large acedemic facility would you suggest in my area (southern US) for a full workup?

[4t1074]

Yes, i've seen 5 neuros, however, i've just been resched for a 3 day workup in Houston, based upon my progression.  You need to find the closest MDA / ALS clinc in your area and schedule to see a Neuro there.  They are the only ones who really know ALS and can tell you what you have!  From my experience, don't waste your time with ordinary Neuros, they don't see cases like yours and mine and it was a complete waste of my time and money.

Regarding your appt., you need to write down your symptoms & questions and bring them with you.

Good Luck!

[4t1074]

How are your reflexes? Are you having tounge twitches?  Any facial twitches. It seems 10 months of fascis, you should be ok, but again, ALS is a crazy disease and very unpredictable and difficult to diagnose.  More than likely, your safe.

[boostedtoy]

How are your reflexes? Are you having tounge twitches? Any facial twitches. It seems 10 months of fascis, you should be ok, but again, ALS is a crazy disease and very unpredictable and difficult to diagnose. More than likely, your safe.


I am not having tongue twitches. That is the only place on my body I can think of that I havn't had twitches. I do have facial twitches at times, not nearly as frequently as the rest of my body though. Have you went to a neurologist yet? I have an appointment for this coming thursday. I don't know what could cause this. Are there any other diseases/illness's that could cause full body twitching and my tongue to be tired and having ripples on the outside edges? I think it will be one year since the initial twitches that I remember(that I remember, they may have started sooner but maybe not enough to catch my attention) in two months. About the reflexes, I am not sure. The general practioner tested my knee reflex and said they were a little more active than most.

[boostedtoy]

Wow, this sounds familiar. I have had something extremely similar to your situation happening to me for about 10 months now. It started back in February or early March of '06. I'd like to hear some answers to your questions that you posed. I don't have the cramping that you speak of anywhere. However, I have pretty much had full body fasciculations for 9 months now. Some of this stuff is subjective, some is objective. For instance, I sometimes feel like muscles start fatiguing quicker than they normally would have. However, I havn't been to the gym in about 6-8 months now for the most part, and i'm fairly out of shape compared to usual. Objective, my tongue has felt strange and tired for 3 months now. I have the ripples around the edge of the tongue that you speak of. My strength overall in my body is roughly where it was before. I can still bench press 225lbs for 5 reps. I will be starting back to the gym soon to see if that increases (I just went to the gym yesterday). My muscles feel anxious, like it would feel more natural for me to be moving them than staying still. I am very worried about the full body twitching (both arms, legs, abdominal muscles, back muscles, face, and I can trigger the twitching in some areas by flexing the muscle) and the tongue feeling tired (jaw feels tired on and off, but the tongue feels fairly constantly odd, and gets tired quick...and I notice markings around the outside ridge which almost look like a couple of teeth impressions). I have an appointment with a neuro next week. I'm not sure what to expect, but I've been pretty tormented by this and expecting bad news. Good luck to you.