BFS, West Nile, or ALS?

[koopie33]

So, I started with headaches last summer, fairly mild, then tightness in my right leg in September, then twitching in my eye for a week the end of October, which progressed into an all out twitching mania that persists to this day. I saw my neuro the end of January who ran a West Nile test and did an EMG on both legs, my back, and all the way up my right arm, for a total of probably 15-16 sticks. All normal. I was diagnosed with Benign Fasciculations. The day after my EMG, I started with "bulbar" issues.....tongue felt thick, voice is hoarse, my throat twitches....etc. etc. The second week in February, they called to tell me that my West Nile test came back positive, which is the root of my problems. I called them last week to tell them that I am scared that it's ALS with bulbar onset, and they reassured me yet again that with a clean EMG and a positive West Nile that it is NOT ALS. Can I be assured of this dx? Or should I get a second opinion. I'm still scared. My neuro said the EMG is a conclusive test for ALS, but on the ALS forum boards, they say the EMG means nothing. What do I believe? I believe my clinical exam was normal, and I have no weakness....just a lot of throat sensation, like someone is choking me, or my neck muscles are tight. I'm on Xanax, and my symptoms abate considerably after taking one of those....Thank you in advance for your time.
Shauna

[Mo]

NON EXPERT POST


I'm not a doc or an expert...but while you are waiting for one of them to respond you may want to read this(from a previous question).

[Dr_Gotkine]

Thanks Shauna,

Well I would like to make the following 2 points:-

1) An EMG which turns out to be normal does not exclude the possibility of a motor neuron problem, however, if the problem is twitching (fasciculations) in specific muscles, and the EMG of those muscles is normal, then you can rest assured that the symptom of twitching in the tested muscles is not due to ALS, especially if there is no weakness in those muscles.
2) ALS does not come and go. So if your symptoms sometimes get better with xanax then this is not compatible with a diagnosis of ALS.

Do you feel that your symptoms have any relationship to how anxious you are feeling at the time?

[Mandy]

NON EXPERT REPLY


I am not a doc either, but exactly the same thing happened to me after a horse-riding expedition. The stiffness in my right leg confused the neurologist who thought (right in retrospect) that it was anxiety (which i put down to unpleasantness of divorce)which he said would not cause one leg o be worse than the other though.

Then i realize that i am using the same leg to get on the horse and so i take a break from horse riding for 2 weeks and the legs get better and my anxiety does too (which made my throat and swallowing better).

Anxiety can play funny tricks on you, wish you better.

Mandy

[koopie33]

Thank you, Dr. Gotkine, for answering me, and let me say that I am not sure about the anxiety issue. It does not seem to get better when I am having a good time and not thinking about it, if that matters. Also, what do you think about the West Nile issue? My neuro thinks that my symptoms are entirely due to West Nile, what is your opinion on that? Also, can you develop bulbar onset ALS just like that? I mean, one day, I had no symptoms, and literally, the next day, I have them all. Is that even possible? Also, I feel better for a little while after I've eaten. Could this be globus from BFS? Thanks again.....
Shauna

[clinicalguru1]

Could this be globus from BFS?

What do you mean by this.

Please explain which symptoms your neurologist said were due to the WNV.

Please will you send the serology results of the WNV tests so we can address this.

Thanks