Bulbar onset, "normal" EMG?

[Al]

Obviously I have too much time on my hands. LOL.

 

[John1]

Hi John. Just sitting here wondering If John 1 has any biblical reference or was just John taken?

Ha, ha ha. If you knew me you'd laugh too. There was a time though that I had memorized the names of all the books in the bible, old and new testament and could recite them. Nope, John was taken.

 

[Al]

Well that's good because I didn't want any conflict as to who was the higher authority. On the old forum under my name it had "gift from God" I had posted so many times that they thought I deserved recognition I guess. Sort of like the Oscars. Nice to be recognized by your peers. Kind of makes life worth living with this miserable disease.
AL.

 

[TBear]

... yep, but I was a "gift of God" too in the last one... and we both know that that ain't true!
Also... in this thread, anti depressants have been prescribed for saliva control! ... not to say that depression isn't an issue with ALS... but there are other motivations.

 

[Al]

Don't be so hard on yourself TBear. We all know that you're a great guy.

 

[TBear]

now Al... thanks, but I 've been around here enough to know that getting mushy and gooey isn't an ALS symptom!
I hope Carol is having fun cruising... the professor and I are heading to England again next Sunday and taking a side trip to Barcelona (she has business at the university). We got a flight from London Stanstead to Barcelona for only 10 pounds... I can't drive my truck from here to Orangeville for that little!
take care and thanks.
T.

 

[bella]

Hi COlisa

Could you please tell me if your husband had an EMG of tongue? My situation is similar to your husband's in that I have bulbar signs-but my EMG is negative. I have problems swallowing liquids, twitching in my throat and stiff jaws. I also have twitches all over my body, brisk reflexes and can no longer exercise as I am always fatigued. My doctors are still not committing to an ALS diagnosis bt are not coming up with anything alternative either.

 

[COlisa]

Hi Bella,
The short answer is that no, my husband did not have EMG on face or tongue, only on his limbs.

I send you a much longer, detailed reply in your personal inbox. Please have a look & email me back.

Cheers,
COlisa

 

[davis06]

Colisa

I was dig. with bulbar als in May, I also look back at having breathing and some
of the laughing and crying spells about a year are so before being dig. Speech getting
slured for about a year. Now it is some worse I now use a pipap, and speech
seems worse. I also feel some weekness in legs and back. The doctor told me
everybody progressed dif. My hands are cramping some but they have been
for as long as I remember but they seem alittle worse now I thougt it was just my
age. Does anybody no how that drug Rilutex supposed to help.

Davis

 

[Al]

Hi Davis. Sorry you are here in this leaky boat we call life. If you do a search at the top of the page you will find quite a few different opinons on Rilutek. Some say it helps some say it didn't appear to help but how do you know when 50 different people with ALS will all have different progression rates. If you believe the studies done they say it will help keep the worst symptoms away for an extra 3 to 6 months. I have heard some say that one study says 18 months but haven't read that one myself. Some don't like the side efects. If you go to the drugs.com website it gives a bit of information about Rilutek(Riluzole).

 

[Matt]

Hello!

My story (Male 41) started last June with widespread fasciculations you could feel and see all over the body and mild leg/hand/feet cramping (like you have some kind of heavy limbs!). Also felt some weakness in left arm and leg. I had been examined starting from that time by four different Neuros (including a specialized Muscle Desease Center) doing clinical and EMG-Exams on each and every limb 5 times. (all time clean!)

Then since last October every kind of weakness had vanished and I had almost 6 months without any problems apart from slight bodywide fascicullations here and there.

Since 6 weeks after intensified exercise there had been again some kind of weakness regarding the left body-side, mild cramping and bodywide twitching. Repeated clinical- and EMG-exams are fine so far, no reflex-changes, no athrophied muscles, no clonus etc..

Since almost three weeks I experienced the following: increased saliva (my lips seem to be sometimes glued), I had to clear my throat more than usual, not a clear voice (but nobody so far is recognizing that), somehow laboured speech. When this started every kind of weakness I had experienced before vanished, only bodywide twitching had increased.

The Head of the Neuro-Clinic has examined me clinically one week before and stated the tongue looked fine so far, he could not recognize any fascicullations, no bulbar EMG-needed, my voice would sound o.k. everything else is also in proper order. Limb-EMGs are also fine but as I got it from your replies not conclusive in bulbar case. When I had my tongue in a rested position in my mouth everything is fine (no fascicullations, no whiggeling) but when I stretch it totally you see it has sometime in a special position little tremors at the sides. Tongue has still full strength so far, no problems swallowing or drinking liquids.

My hope is that it has something to do with the following:

-Kind of Laryngitis (we had two cases in our small company during the last four weeks)
- Pure anxitiey
- Something else?

My familiar situation is, that we have two kids (3 and 7) and my wife has been diagnosed with large high malicious breast-cancer two years ago and they are still testing her every three month-time.

How are my chances to step now into Bulbar-Onset-ALS after the above mentioned history? Would a Bulbar-EMG be conclusive? Are the clinical clean test resulst so far somehow revealing? Or is there anything else you could recommend in this case? What should I do?

Matt:?: