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Neurology (Expert Forum)
ALS or something else
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
ALS or something else
by 4t1074, Oct 23, 2006 12:00AM
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
Doctor's Answer
by CCF-Neuro-M.D.-SH, Nov 06, 2006 12:00AM
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.
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.
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.
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?
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
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.
I've got a friend that's really connected in the ALS / MND community, because her daughter has it. At any jun