Please give info...

[JenniLee]

Dear Friends:

I'm confused about testing for ALS. From what I've been reading thru the posts, so many have gone through tests I've never heard of. My Neurodiagnostic did:

Speech: Strangled quality
Cranial Nerves: Facies (what's that? poop? ) are symmetrical. Easily elicited gag response; positive jaw jerk (what's that: I'm a jerk to my jaw?).
Gait: Unable to heel walk on left side.
Coordination: Diminshed in left hand.
Faciculations of the tongue (what's that? I didn't curse at him).
MRI of brain & c-spine: negative
Estensive "serological evaluation including bloodwork for toxic exposures" -- all negative
EMG: Upper & lower extremities diminished ulnar motor on left side. Remainder is normal. Tongue, showed motor unit recruitment abnormalities.....blah, blah...findings consistent with motor neuro diseases such as those related to pathology in the anterior horn cell.....HUH???????


Also, my good friends;

given those were my tests, are there any suggestions on what other tests I might want to ask for?


All I hear is that ALS is a process of elimination; What I don't get, is how can they eliminate with so few tests?

By the way, anyone see the movie "The Secret"? or read the book? I would highly suggest it -- it is very uplifting & powerful.

Thanks!
Love, Jen

[patricia1]

jen Sounds like my results as well And they still are clueless if you ask me pat:-?

[JenniLee]

Pat,
So, what did they come up with for you?

By the way, what are you doing in terms of self-help to fight this thing? I'm open to all suggestions.
:-)
Jen

[LONGSAM2]

Hi Jen.....for whatever reason I also had a spinal tap. Hang on! Sharon

[ltr]

Hi Jen,

Because of my time spent working in the hospital, I can tell you what some of the terminology means!

Facies is the way your face looks. In medical terminology this can be described by any abnormal look. Yours was even and the same on both sides!
Jaw jerk is like a reflex in your jaw.
Fasciculations of the tongue is another term for "twitching"

This is very few tests to use for a diagnosis. I would assume your doc went strictly by the results of your emg, but that's just my assumption. You know what can happen when people assume! I hope this helped with some of the terms.

[hopingforthebest]

Hi Sharon

My husband recently had spinal tap. Doctor called and said results were neither good nor bad, and showed some white cells (???) and protein was 60, normal is 40, and
probably higher because he is getting IVIG.

Did you get results of your spinal tap.

What are they looking for in a spinal tap with ALS??

Thanks!

Patty

[patricia1]

Jen I had a spinal tap and it was normal They look for lymes protein MS white cells I have a dx of ALS and all my blood emg MRI are normal They came up with ALS as a process of elimation which I find bizzare Pat

[LONGSAM2]

Hi Patty,.....my spinal tap showed white blood cells but didn't know what that meant anyway. Outside of that it was normal.........Sharon

[patricia1]

When there is white cell present that means infection of somekind The amount of white cells is important few white cells is basically normal but many means an infection and should be repeated an or treated Pat