Old 06-15-2012, 01:32 PM #1 (permalink)
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Default Should we defer further testing?

This is my first post. My heart goes out to everyone that has to deal with the effects of this devastating condition.

My wife had foot drop a month ago, and it isn't getting any better. In fact, dorsiflexion is getting more and more difficult. There was no trauma to cause the foot drop, and there are are present no other symptoms, and no pain or loss of sensation. I strongly suspect ALS, yet remain optimistic that there is another cause.

The neurologist wants to do an EMG/NCS series. My wife and I talked about it, and have tentatively decided against the test at present.

What good can the test really do? Not only is the test painful, but if the nerve is normal, there is probably a more sinister cause of the foot drop. We'd both rather not know that. If it is indeed ALS, further symptoms/signs will eventually happen. We'll deal with it then.

Does anyone else share this rationale?

Thanks to everyone in anticipation.
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Old 06-15-2012, 01:46 PM #2 (permalink)
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Default Re: Should we defer further testing?

Personally, I'd like to know what it is in case it's something treatable. If it is ALS, terrible as that diagnosis is, there are lots of resources out there with an ALS diagnosis. It's a different way of life, let me tell you. Knowledge is strength. Burying your head in the sand is dangerous, mentally and physically.
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Old 06-15-2012, 01:50 PM #3 (permalink)
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Default Re: Should we defer further testing?

Nope... I didn't even consider ALS for my footdrop when I had my testing, but it's better to know the elephant's in the room than try to avoid it at all costs. ALS can be slow, it can be incredibly fast... you need to know what you MAY be dealing with, and get things lined up before you need them.

At the very least, your wife may need to start using an AFO and a cane to prevent falls. But do not assume that it's ALS just because of foot drop, there are many other reasons for it... and some if you delay treatment, she'll lose more muscle, etc.

Good luck, and have your wife come and join us when she's ready as well. Keep us posted!

BTW, I didn't find the muscle testing all that painful for the most part...
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Old 06-15-2012, 02:06 PM #4 (permalink)
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Default Re: Should we defer further testing?

Well I wrote a response and it disappeared so maybe it went to moderation. Personally I'd want to know in case it's something treatable. Did your wife work outside the home? And if it is ALS there are lots of resources made available to you that will make the difficult dia gno sis easier. Burying your head in the sand is dangerous mentally and physically. Knowledge is strength.
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Old 06-15-2012, 02:08 PM #5 (permalink)
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Default Re: Should we defer further testing?

I wrote two responses that went to moderation and they're pretty much the same. But I give up. Find out what it is so you know whar your next step should be. It may be something treatable.
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Old 06-15-2012, 02:09 PM #6 (permalink)
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Default Re: Should we defer further testing?

Arrrggg. I posted 3 and they went to moderation! They will show up eventually. Sorry!
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Old 06-15-2012, 02:15 PM #7 (permalink)
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Default Re: Should we defer further testing?

Absolutely not! What if the tests lead to some other cause that is treatable?
Your wife is at great risk of falling with the foot drop. Very dangerous and walking with foot drop can be extremely fatiguing.
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Old 06-15-2012, 03:05 PM #8 (permalink)
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Default Re: Should we defer further testing?

Hi Marta, mine's gone to mod land as well, over 2 hours ago I think...

All good things come to those who wait!
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Old 06-15-2012, 03:42 PM #9 (permalink)
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Default Re: Should we defer further testing?

While waiting for Pie and Helen's post to show can I ask about how old your wife is?
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Old 06-15-2012, 03:49 PM #10 (permalink)
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Default Re: Should we defer further testing?

Thanks to everyone for the help.

She is 48.
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Old 06-15-2012, 05:45 PM #11 (permalink)
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Default Re: Should we defer further testing?

Naranja,

The other po sts have not come through yet, so I'm probably going to give you the sequel before the prequel. Until M R I's, blo od wo rk and the in fa mous E M G are performed, you cannot ru le out something that could po ssi bly tre at ab le. How would you feel if in 2 or 3 years she su ffe red from XXXX and if tr ea tm ent had been started, she would be fine? I know I would be devastated to say the least. Make another a ppoi nt me nt and dis cuss the te st and po ssi bil it ies over with her doc tor. Do you have chil dr en? With the ad vance ment in me di cine, your wife, if she in de ed has A L S, could li ve sev er al more years.

And the te st is not as pa in ful as you might think.

Good luck and let us know,
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Old 06-15-2012, 05:50 PM #12 (permalink)
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Default Re: Should we defer further testing?

Ha Ladies,

You must learn to type in broken english! I voice mine and then take my sty lus and in sert it in to break up the key words. When I do get time out, its because I ran my mouth too much! and missed a word.
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Old 06-15-2012, 05:51 PM #13 (permalink)
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Default Re: Should we defer further testing?

Still waiting for other p os ts but will quickly agree with Toto, te st ing is not that bad. Your wife is quite young, please consider that as well.
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Old 06-15-2012, 05:59 PM #14 (permalink)
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Default Re: Should we defer further testing?

Alas, my post is still lost... not that it was all that great! But what Toto said, footdrop doesn't always mean ALS, and the EMG is the best way to determine if it reallly is. And MRIs as well.

IF it does turn out to be ALS, you need to stay in front of it... get that equipment before you need it so when you do, it's not as difficult a transition.

Your wife is young, the progression could be very slow... I've been diagnosed over 2 years, started with footdrop in left foot, and though I don't walk, I can still stand up, transfer, eat just fine, and use my scooter and now my new pwc to get around.

Good luck, and keep us posted!
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Old 06-15-2012, 06:33 PM #15 (permalink)
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Default Re: Should we defer further testing?

Mine too but I said about the same as all the other ladies.
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