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Old 11-10-2011, 11:52 AM   #1
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Bulbar ALS... scared i may have it.

Hello all. I am new to this kind of stuff so forgive me if i screw something up.

I will jump right into it with my symptoms and what i have done so far to find out exacting what is wrong with my body. its a bit long but i would definately appreciate everyones opinion.

My first symptom that i got was after i was recovering from pneumonia back in July. My eye sight started going a little haywire on me, i could see everything just fine but my vision seemed off(hard to explain). It came and went but hasn't gone away. I went to a opthomologist for a full exam and they told me that i have a convergence insufficiency. A month or so had passed and other symptoms started popping up. I felt like i was talking funny(nobody seemed to notice), both of my knees felt weak, short of breath, get light headed if i stood up or turned to fast, lack of appetite and nuasious feeling to go with it, ringing in my ears and sensitive to high pitched sounds, and i felt like i had a lump at the bottom of my throat. I went to an ENT doctor for my hearing and everything looked good. I asked to have a balance test, i have not got the results back yet. And i am going in for a videostrobe this coming monday, November 14. I will get the results from my balance test monday as well.

So I ended up getting a brain MRI done to see if there was a tumor. Thankfully it came back normal. After that came normal i was sent to a nuerologist. Before i made it in to see the nuerologist i started have muscle twitches all over my body, which really freaked me out. I seem to have a sleep apnia problem, waking up after 4 hours asleep. The muscle twitches have really calmed down since then, only 5/6 a day now.

When i saw the nuerologist and expressed my concerns with possibly having ALS he wanted to have blood work done and conduct an EMG of my right leg and right arm. I got the results and everything came back normal, both. I don't know what to do next.

 
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Old 11-11-2011, 07:29 PM   #2
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Re: Bulbar ALS... scared i may have it.

The fact that your EMG came back normal is great news! Muscle twitches with ALS don't come and go. My mothers were more like fasciculations than twitches, meaning we could see creepy crawlers under her skin but she couldn't feel them. Continue with your neurologist...journal all your symptoms, it helps. Get second opinions...To me...this doesn't seem like ALS...may be neurological but not ALS.

 
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rott (11-14-2011)
Old 11-15-2011, 10:14 AM   #3
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Re: Bulbar ALS... scared i may have it.

I have another question....

Since i had a clean EMG of my right leg and right arm...Is that a indication of no Bulbar ALS as well? I am reading and hearing conflicting answers to this question and would appreciate some clarification. Thanks.

 
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Old 11-15-2011, 08:00 PM   #4
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Re: Bulbar ALS... scared i may have it.

Doctors typically test the tongue/neck too. I'm not an expert so I can't answer that, but still having a negative EMG is good. Keep asking question...go for a second opinion...preferrably to an ALS clinic.

 
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Old 11-16-2011, 09:54 AM   #5
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Re: Bulbar ALS... scared i may have it.

thanks anxiousme.....I actually started writing down all my symtoms a few days ago, i was starting to loose track of things occured. I am in the process of making another appointment, a specialist on ALS.

 
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Old 11-16-2011, 01:51 PM   #6
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Re: Bulbar ALS... scared i may have it.

Hi Rott..
Prayers are with you..It is very helpful to write down everything.. and it seems that now you are probably noticing everything.. it is like you suddenly become hyper-vigilant. My husband was diagnosed with ALS and also Lyme disease. I believe lyme may have been a trigger mechanism for underlying ALS. He was only 40 when he was dx, which is very young.. the average age is 53 or so. From what I read, it seems that although you have some symptoms of ALS.. they are symptoms from so many other "things".. medications etc... and unfortunately sometimes extreme worry can aggravate the conditions. I am not telling you that you don't have cause for concern, but I just feel in my gut that it is something other than ALS. The fact that that test came back okay is HUGE. Hang your hat on positive news.. and hold on. Winston Churchill had a quote that I liked very much.. "When you're going through hell, keep going." I know how I woke up every morning with sick dread in my stomach.. and it took special courage to face those neurologists.. who are not always the most "people friendly" docs I have ever met...but write down everything.. take a good friend or priest, minister with you... and know that complete strangers are joining in positive thoughts for you, as many of us have been down similar paths.. albeit kicking and screaming when we had no choice. Please keep us updated and know that you are not alone.
Jenny

 
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Old 07-09-2013, 11:15 AM   #7
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Re: Bulbar ALS... scared i may have it.

Quote:
Originally Posted by rott View Post
I have another question....

Since i had a clean EMG of my right leg and right arm...Is that a indication of no Bulbar ALS as well? I am reading and hearing conflicting answers to this question and would appreciate some clarification. Thanks.
Bulbar means the top of the brain is causing the first symptoms. EMG would show if you had Bulbar ALS because it effects the motor skills.

i am a Martial Artist memory muscles don't go away. When something drops I catch it as fast now as when Ii was 27.

Last edited by ALSGreyAngel; 07-09-2013 at 11:24 AM.

 
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