Bulbar Onset ALS? You probably know more than docs.

[KarenACR]

I am a 50-year-old female and a full-time court reporter. For the past 6 months I have experienced speech slurring, yawning when I try to speak, facial twitches, and painful neck cramping when I yawn. The twitching has moved into my diaphram and arms, especially at night. My breathing becomes labored when I speak more than a few sentences. I feel weak and tired much of the time. Worst of all, my emotions are out of control.

I saw a local neurologist who says it is not a stroke or a brain tumor. My MRI was clear. I could not tolerate the EMG nerve conduction study -- felt like my leg was being tasered. I have an appt. to see an MS/ALS specialist in a big city in December.

To anyone who had the patience to read all of the above, did your symptoms begin like this?

[BethU]

Karen, yes ... except for the twitching. My bulbar symptoms started with slurred speech, and also gasping for breath when I tried to speak.

It's good you are seeing a specialist. One thing to hang on to is that there numerous other conditions that have these same symptoms, and ALS is very rare. It will take a lot of testing to narrow it down to ALS, so don't throw in the towel.

Hang in there. I'll keep you in my prayers.

[KarenACR]

Thank You, Beth.

[halfin]

Hi Karen - I don't like those NCV tests either, I have always been bothered by electrical shocks. Even the little ones you get in the winter when you touch a doorknob always bug me. Did you get the EMG test, where they stick a small(ish) needle into your muscles? That is very useful in helping to rule out ALS. It can be uncomfortable or even painful depending on how big the needles are that they use, but at least there are no shocks.

[SandraD]

HI Karen,

Hmmmm-- a taser- that sounds like the nerve conduction (NCV) study. I think the neurologist is going to need to do both an EMG and an NCV.

Personally, I did not find either the NCV or the EMG test to be painful. I thought the nerve conduction test (with the shocks) was more uncomfortable than the EMG, but everyone is different. I wonder if they can give you some kind of sedative to help you endure the tests, which will give the neurologist a lot of information, hopefully pointing away from ALS.

someone else here may know better than I do whether a light sedative is possible.

good luck-

Sandra

[KarenACR]

Hi Hal, Thanks for writing back. The young girl who was shocking me said that if I couldn't take the shocks, then I certainly couldn't take the needles. When I asked if they could give me something to keep me from reacting so strongly, she told me "We don't give out drugs here" like I was drug seeking. I am hoping for more professional personnel and better medical expertise when I go to Kirklin Clinic in Birmingham.

Karen

[KarenACR]

Sandra, thanks for your input. As I told Hal, I think I will get better medical advice from the neurologist at Kirklin Clinic who specializes in MS/ALS. The one I saw in Huntsville had just passed his boards in 2007 and just opened his private practice.

How are your symptoms progressing?

Karen

[lydia]

Karen, I can't believe the tech said that about the needles (EMG)! Many find the EMG to be much easier to endure than the "tasering" (I like that description; it's perfect). Had you continued, you could have had enough information to have your mind at ease, or on the other hand, to be genuinely concerned. I wish you the best of luck at your upcoming appt.

Lydia

[KarenACR]

Hi Lydia. Thanks for writing.

I wish I could have continued the "tasering" and I tried, but every time she shocked me, something would blurt out of my mouth like "Holy $&@*" and "Is that necessary?" Then I started to cry, which I never used to do but is happening quite a bit these days.

Does anyone know if they can turn down the "volume" on those shocks and get the information they need?

Karen

[GlenBrittle]

Hi Karen,

You need an insane attitude when you go for those tests.

I am the worlds biggest wuss when it comes to needles.

So , if you must blurt out something , make it crazy.

"Thank You , may I have another"
"Oh Baby ... gimme the juice"

and when they say " OK , I'm turning this up , it might hurt a bit "
counter with "I'm really starting to like you - lets do it"

Yeah it hurts like hell , but it gets you through it.

Glen

[rose]

Karen, I once had a repetitive stim NCV, The tech told me she was going to do a couple of "samples" for a baseline, and then I would receive 10 shocks in a row. After the first "taser" (as you so aptly put it) I looked at her and said you're not serious about 10 in a row just like this are you??? (and she was) I got through them ok but OMG! it brought back childhood memories of my brother, the budding scientist, using me as a guinea pig! ... good luck in getting your courage back up. I think you really really need to get through it so your doctor can get a clearer picture. Maybe if you promise yourself something you really like for after, like a decadent slice of chocolate cake, or a pedicure.

[KarenACR]

Glen, I like your sense of humor. I just hope the tech has a good one if I use your suggestions!

Rose, I like your idea too, a special treat if I get through it. Maybe something chocoloate....

Thank you both for responding.

Karen

[GlenBrittle]

come on Ladies, dont sell yourself short.

Special treats should include diamonds or exotic vacations. Maybe that new car you have been looking at.

After all, are you not special?

[rose]

Well Glen, That depends on who's footing the bill for those treats!... Actually the prospect of a pedicure is always a big motivator for me, but it has to be the type that includes the hot towel wrap on the legs. Now, to be sitting on a balcony overlooking the ocean (doesn't matter which one) having the hot towel pedi AND a shoulder massage,whilst sipping a glass of red wine, and nibbling on chocolate cake with lots of icing....

[Zaphoon]

I rather enjoy getting tasered (the NCV test) and the needling was kind of fun, too! But then, I'm the guy that wires 9v batteries to his twitches.