Is this ALS or am I crazy

[Kerri29]

I am a 29 year old female in August of 2002 I began to have muscle twitches all over my body I used to get about 100 a day, now I get 5-10 a day. I have had several emgs because I work in a medical establishment and work with a doctor who does them. I had one ordered by my neurologist in November of 2002, it was of the arm where the twitching began. The emg was negative and so were the legs done in February 2003, tongue done in May 2003, and repeat left arm and leg done in July 2003, I also had facial muscle done in August 2003. I recently had another emg of my tongue and facial muscle done in January. All have been negative expect there was an occasional singular fasciculation found in the left leg done in February but when repeated in July it was no longer there.

My concern lately is that I feel like I cannot talk, I am pregnant and very tired, I am not sure if that is adding to my problem. I feel like my teeth catch my tongue when I am talking and last night I bit my tongue in my sleep, bulbar als really scares me, do they beging with tongue biting. I have my wisdom teeth still I am not sure if I am being crazy or is this stuff for real.

I have had two negative swallowing studies, a negative PFT, to negative speech exams. I have seen an ALS specialist in ALbany and NYC.

Throughout this I have seen about 5 neuros all said BFS, but I keep driving myself nuts with all this. HELP!!!

Should I drop the ALS **** or what.

Kerri29

[mama8]

A bit of site information - once a question has been answered by the doc, he will not revisit the thread.  You cannot post your medical questions on someone else's thread and have it answered. They will post only 2-3 questions a day and the only way to get yours answered by the doctor is to be one of those few.  

Hope this helps!

[Carling]

Here's a comment that I just posted to someone else. You will find reassurance at this site also.

Please go over to Harvard University's "Braintalk" site. There you will find dozens...even hundreds...of individuals with your exact symptoms. Most have had them for months or years and have been diagnosed with nothing, other than BFS. Post your story and you'll get tons of reassurance.

This site has recently been moved to a new server. Here is the URL

http://brain.hastypastry.net/forums/forumdisplay.php?f=191

It would be worthwhile to also go to the old forum and browse the archives. It can be accessed at:

http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi?action=intro&category=2&BypassCookie=true

and select "Neuromuscular"

Carling

[cfritz]

This is my first visit to your site.  How do I post a question?

[wiseowl2004]

I'm sorry I couldn't get to asking a question.My EMG showed no spontaneous activity but some low amplitude MUP along with some polyphasic units. The neuro insisted these were not the signs of ALS, in fact she said "even on the opposite - not giant but low amplitude MUPs". From your experience, is it possible for a person to have such results at the very beginning of ALS?

[cgipper274]

Sorry to hijack this person's thread with this long post, but I was unable to post a question of my own. Think of this as a follow up to the topic.

I'm a 30-y.o. male living in Osaka, Japan. I've noticed several minor but lingering health problems since I arrived here almost two years ago. This is hardly clinical, but my guess is that most of these problems (colds, allergies, and a more sensitive gastrointenstinal system) are probably related to the fact that I'm living in a foreign country. My job and lifestyle aren't especially stressful but I sometimes feel an underlying stress of living here.

I wasn't too concerned about my health until about two months ago. In early December I caught a cold, had hoarseness of voice and throat mucous. The mucous seemed a little harder to swallow than normal, but I was still able to swallow or spit it out. The cold went away after a few days and didn't think much about it, but then right around Christmas and New Year's, I took a trip to Tokyo and noticed on the way there that my throat had this pulsating feeling, like a tremor or constant twitch or something that wouldn't go away. It also started to jerk my face a little around the left side of my mouth. It was a hard jerk but I could feel it and even see it a little bit. I never developed true dysphagia (was able to swallow foods and liquids) but it did feel uncomfortable to swallow and it even made my breathing a little bit labored. After about two days, the symptoms went away.

I didn't notice anything for about two or three weeks after, but sometime in late January or early or February (as I recall) I once again became hoarse and lost my voice temporarily. Once again, I recovered, but just as I was starting to get over my cold, I started developing twitches - only this time they weren't limited to my throat and facial area, they were all over my body. My legs, feet, butt, shoulders, arms and hands were all affected. It got to the point where I couldn't sleep very well and I would go into work tired. At first, the throat area wasn't affected so much but about two weeks ago, the throat discomfort and facial twitches returned. Again, I was able to swallow my food and liquids without choking or gagging on it, and it seemed to pass relatively well through my esophagus. What really worried me too was the fact that for the first time I noticed I had trouble manipulating certain objects with my hands. My hands feel tingly, numb at times, but would then return to normal (usually after minutes at a time).

Most recently, the twitching symptoms appear to have decreased in intensity a little, although they are still present and noticeable. Like last night, I could feel twitches in my legs, shoulders, arms and buttocks. The most worrisome symptoms I developed in the past two or three days: my legs are beginning to feel a little stiff! I don't feel like I've necessarily actually lost any real strength in my arms and legs, though they feel as though they've been worked harder than they really have been. In other words, my strength still feels intact, but my endurance is much less. My muscles stiffen much faster, particularly in the legs right around the knees and rear of the thighs.

I don't know what to make of this, but I'm obviously worried that it's something more serious than an autoimmune disorder or BFS. I'm worried that it's either ALS or MS.

To date: I have had twitching, throat discomfort, slight trouble speaking at times, slight muscle fatigue after moderate usage (15 minute walks), limbs sometimes feel heavy, though usable.

I have NOT had unusual episodes of tripping or dropping things.

I'm still able to speak fluently with only minor trouble when the twitching affects my lips and throat, which is only occasional.

I have not had true dysphagia, which is to say that I've not had trouble swallowing food and keeping it in my stomach despite intense discomfort and tightness in the throat and esophagus at times.

It's important to note that the symptoms appear to come and go and that different parts of my body appear to be affected more significantly than others, depending on the day and, quite literally, the time on that particular day. For example, about a week ago my throat appeared to be affected most significantly while over the past few days my legs appear to have been bearing the brunt of this affliction. My throat/face symptoms are present at times, but intermittently, just as it appears to be with other parts of the body.

Does this sound like it might be ALS?

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

Although it is not impossible, it is extremely unlikely that a 29 y/o would have ALS. Also, the duration of symptoms without clear pathologic progression would also be unlikely for ALS. The many EMG's and neurologic examinations would also be unlikely. Therefore, it is most liekly that you do not have ALS. A syndrome such as BFS is possible. Stress and excessive excercise can also exacerbate symptoms. It seems that you have had many good evalautions, including some by ALS specialists, and that ALS has been excluded as a possible diagnosis. However, without examining you and reviewing the information I can not tell you to drop your concerns (only a physician who has seen you can do this). Good luck.