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Neurology (Expert Forum)
Worried about ALS
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Worried about ALS
by Jarosz, Feb 14, 2007 12:00AM
Hi - I need some medical advise. On July 24, 2005 I came down with a viral infection in that affected the nerve in my inner ear. I had streph throat and a head cold. Felt real weak and started to get dizzy about 3 days into this. After many trips to the doctor they finally diagnosed me with Vestibular Neuoronitis. I still struggle with the dizziness. Well a few months after this started, actually in Nov 05, I started to get the twitches all over my body. I wasn't to worried at first till I came across a website that listed the possible causes of it and low and behold it stated it could be from ALS. That really freaked me out and was a wreak. I got into my Neurologist in Feb. 06 and he performed an EMG and Nerve Velocity test which came back normal. I have been back to the neurolist quite a bit just to have them check me over and he has always stated that I have BFS. I even got a second opinion and got the same answer. Since, I have my ups and downs with this. Just yesterday I noticed my elbows twitch all the time. I haven't noticed this before, but it's really scaring me. I have gotten spots on my body that will twitch for a few days and then go away. I don't have any weakness, but also feel like I slur a bit, especially when pronouncing my "r's". Can you answer a few questions for me.
1) I am a 27 year old female. Would it be rare for me to have ALS
2) Twitching for 1 1/2, would I be experienceing other symptoms if I had ALS
3) Based on my symptoms, do you feel I should get another opinion or have suggestions of something else I could have
1) I am a 27 year old female. Would it be rare for me to have ALS
2) Twitching for 1 1/2, would I be experienceing other symptoms if I had ALS
3) Based on my symptoms, do you feel I should get another opinion or have suggestions of something else I could have
Doctor's Answer
by CCF-Neuro-M.D.-SH, Feb 27, 2007 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.
The symptoms and story that you provide is most consistent with benign fasiculation syndrome. Fasiculations are brief twitches in the muscle that do not cuase movement across a joint. They can be seen in normal people, after intense exercise, with metabolic/electrolyte disturbances, after a viral syndrome (most likely in your case) and in association with certain neuromuscular disorders including ALS. Fasiculations by themselves are not worrisome, it is the 'company that they keep'. If a patient has weakness and atrophy of a leg and develops fasiculations in the leg a certain proximal muscles-this is a concerning history for ALS. In this case the EMG would demonstrate the typical ALS findings. In a person who has a viral infection then develops wide spread fasiculations all over the body (without any weakness or atrophy)- this is not a concerning story and represents BFS. In BFS the EMG does not demonstrate worrisome signs. As far as your specific questions: 1. ALS can present in the 20s but the 30-50 is more common. 2. Yes, if this were ALS I would expect you to have weakness and atrophy (Which you did not report). 3. As discussed above, I think you symptoms fit well with a post-viral BFS. The slurred speech does not fit with this picture and is likely unrelated. I would suggest a formal speech evaluation/swallowing study to evaluate for bulbar weakness as a first step. You would also likely benefit from an MRI of the Brain to evaluate for a structural lesion that could be causing slurred speech.
I hope this has been helpful.
The symptoms and story that you provide is most consistent with benign fasiculation syndrome. Fasiculations are brief twitches in the muscle that do not cuase movement across a joint. They can be seen in normal people, after intense exercise, with metabolic/electrolyte disturbances, after a viral syndrome (most likely in your case) and in association with certain neuromuscular disorders including ALS. Fasiculations by themselves are not worrisome, it is the 'company that they keep'. If a patient has weakness and atrophy of a leg and develops fasiculations in the leg a certain proximal muscles-this is a concerning history for ALS. In this case the EMG would demonstrate the typical ALS findings. In a person who has a viral infection then develops wide spread fasiculations all over the body (without any weakness or atrophy)- this is not a concerning story and represents BFS. In BFS the EMG does not demonstrate worrisome signs. As far as your specific questions: 1. ALS can present in the 20s but the 30-50 is more common. 2. Yes, if this were ALS I would expect you to have weakness and atrophy (Which you did not report). 3. As discussed above, I think you symptoms fit well with a post-viral BFS. The slurred speech does not fit with this picture and is likely unrelated. I would suggest a formal speech evaluation/swallowing study to evaluate for bulbar weakness as a first step. You would also likely benefit from an MRI of the Brain to evaluate for a structural lesion that could be causing slurred speech.
I hope this has been helpful.
Please be advised that I am not responding to you as a physician and that I am not advising you and that what I write is not meant to be construed as medical advice or a replacement from the forum neurologist, et al.
With that said and based on the information that you provide I would say that ALS (Amyotrophic Lateral Sclerosis/Lou Gherig’s Disease/Motor Neuron Disorder) is the least likely cause of your symptoms. Each and everyone of your symptoms are variable and non-specific for any one specific condition. Naturally this makes the search for your diagnosis both technical and clinical. You may want to prepare yourself to expect further test batteries.
I am sorry to hear of your diagnosis of BFS (Benign Fasciculation Syndrome) but on the other hand any benign disorder, though annoying, is a much greater answer than any of the other possibilities related to your symptoms.
In regards to slurring it is very common in neuropsychology that a person who is “on the prowl” for symptoms and memorizes them-can then-intrapersonally create them. This is not intentional but when you are “on the prowl” you will see and notice every possible deficit. If the slurring were well pronounced/obvious your neurologist/s would have seen this and would have added more credit to possible ALS, et al.
As you already know; a 27 year old female is not a likely candidate for ALS and throw in the “no weakness” variable and you find yourself pretty much out of the realm of ALS.
I invite you to consider your pocket book and your peace of mind. You have seen two neurologists who both have the same diagnosis. Many people have BFS and I would more than likely trust them unless symptoms honestly progress. You are killing yourself in a cat and mouse game that cannot be won without space and time.
I am going to save you the anxiety and fear of telling you other possible diagnoses because it will do you no good. At this time you need to trust your two neurologists (something that many wish they had) and rest at ease.
I hope that this has been helpful.
Good Luck!
JCmcc.
I like what you wrote and what you say about headaches/tumors. Very well put. I second that!