Worried about ALS

[Jarosz]

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

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

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.

[jrieth]

I had same symptoms for years. Going on 3.5 years now. Twitching, stiffness, cramping occasionally. If you have had an emg and normal then you are fine. Twitches present after weakness in ALS so if no clinical weakness then you are okay. ALS fears can rule and destroy your life did mine for 3 years. I finally went to an ALS clinic and had an exam done there. Told I was fine. So even though I feel like **** at times, I guess main thing i need to is adjust my attitude. If you are really concerned.. see a neuromusculer specialist. They can tell you for sure. Best thing for me when i get stressed out is to talk a 4-5 mile walk, then i tell myself hey you didn't fall down or trip so all is good. best wishes

[JCmcc]

Dear Friend,
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.

[robertmillerfoundation.org]

Out of curiousity, has this forum now started accepting many more questions per day?  I notice about 10+ posted on the 13th.

[Annie62]

I doubt it.  It looks like they just all went through at once.

[Manhattan]

It's common for BFS to start after a viral infection. That's how it started for me and it's been a few years now. Trust me, the best thing to do is ignore the twitching and after a while you won't even notice it. Be grateful that you have a benign condition and move on with your life. You do NOT have ALS as your doctors have confirmed this and you have no other symptoms. Think of it this way: if you have headaches does that mean you have a brain tumor? No, you would have other symptoms along with it like visual disturbances, loss of balance, vomiting etc... You only have one symptom related to ALS, the twitching. One common symptom does not make ALS and thank goodness for that, because a lot of us have twitching.

[JCmcc]

"Manhattan,"
  I like what you wrote and what you say about headaches/tumors. Very well put. I second that!

[Jarosz]

Thank you for all your comments and reassuring me that I am OK and that I do need to move on and not worry about the twitching.  Sometimes when I start thinking about it I get myself so worked up.  Take care!!

[Manhattan]

Thanks :)

[athena922]

I started out going to a neurologist who specialized in MS. I had all the symptoms, muscle weakness in my left leg that would cause me to fall, followed by a year of remission. He did an MRI which was clear and a lumbar puncture which came back normal other than the fact that I had to have a blood patch done. It was the same every year beginning in 2001. So, I figured I had a pinched nerve. This doctor was sure it was MS because my cousin has it and I had two episodes of Bells Palsy (1998 on the right side of my face and 1999 on the left side of my face). Both episodes lasted exactly 2 weeks without any long term effects. Both instances my family doctor had said he had never seen it that bad.
Well, I didn't make it my usual 12 to 14 months between episodes this time. This time my entire left side goes numb, I get twitching in muscles that are always in a different place. My muscles get so tight they won't relax and when they finally do, they feel like they are extremely bruised, but there is no bruising. The muscles are cramping and hurt. I have about lost my job over this inability to walk this time. I can use a can for a walk across a small room, but my arms are weak now too. Most of the weakness is on my left side, but the right is now starting to feel weak as well. I now have a motorized wheelchair to get around work since it is a complex of 3000 + people and I am a business analyst who does a Lot of meetings all over the place. I'm seeing a neurologist now who has done an evoke potential (VER), another MRI of the brain, many blood tests, and am scheduled for an EMG on the 9th, to be followed up with another appointment with all the results on the 12th. It's too far away... I go to work and smile, tell jokes, and everyone says I'm handling this really well... but I'm going to let you in on a little secret. I'm afraid. I know this is not MS. I thought it was until this episode. I also have muscle atrophy. The physical therapist I'm seeing finally measured and found that my left side has both visible and measurable atrophy. My new neurologist said he was thinking Peripheral Nervous System Disease, but that is so vague, it gives me too many results and possibilities when I look it up. I think it is ALS... The physical therapist says that when I walk, I look like someone who has suffered a stroke, but I have not.
Please, my mind is going in a million directions... help me narrow the field... tell me this isn't ALS...
Sheri

[Annie62]

If you read about ALS it mentions either no or minimal sensory involvement.  Since your left side goes numb, that doesn't sound like ALS to me.  Your EMG should yield something, especially if your weakness is as significant as to require a motorized wheelchair.  Since both your MRIs and LP were normal, why do you not think it could be a peripheral neuropathy?  Has anyone mentioned CIDP (chronic inflammatory demyelinating polyneuropathy) to you?  You are right about peripheral neuropathies being broad-based, but you might want to look up CIDP and see what you come up with.  Good luck to you.