Old 03-24-2014, 09:30 PM #1 (permalink)
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Default Another month of symptoms

Hi Guys,

I am a mess waiting to see the ALS specialist in my area. My regular neuro is referring me to him since he can't seem to figure out what is going on with me. He seems to think it could be small fiber neuropathy, but wants a second opinion with this guy as he is the best neuro in our area. He is also the resident ALS specialist at the MDA/ALS clinic and I'm scared that I am being sent to him. My neuro swears I had a clean NCV/EMG of both arms and legs, so I am at a loss why he would want a second opinion on everything.

My issues:
My right foot has been having balance issues, when i try and stand on one leg (i can) with it it wobbles back and forth forever trying to balance. Its almost like ankle instability, but when i hop around on one foot or run I seem to be able to do it. I find myself losing my balance or feeling like I am off balance as I go through my day and at work. I also have trouble with sensory perception at the bottom inner part of my foot (foot arch) and its what I would like to think is causing the balance issues, but I'm not sure and I don't think my regular neuro is sure either.

I've seen a podiatrist who said I have good clinical strength in foot muscles and was stumped as well. He did comment that i seemed to have trouble balancing one my right foot and I leaned inward on it while walking. Is that how foot drop starts? Leg weakness?

I'm just confused.
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Old 03-24-2014, 09:42 PM #2 (permalink)
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Default Re: Another month of symptoms

Wobbling and balance issues and sensory perception don't sound at all like ALS to me. And a clean EMG means you don't have ALS.

Your neuro wants a second opinion because he's not sure what it is... but he doesn't think it's ALS. Not with a clean EMG.

But I'm not a doctor, so relax and go see the ALS specialist.

Of course, you have a track record of not believing neuros.

And you won't believe me either...
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Old 03-24-2014, 09:59 PM #3 (permalink)
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Default Re: Another month of symptoms

I guess I'm just freaked out because I feel like with the balance and perceived weakness that maybe I'm just missing something to help my doctors. Maybe I'm not describing what I am feeling correctly or I'm not noticing something I should.
I'm frustrated as every test keeps coming back normal, but I still feel like crap.

-Normal Brain MRI with/without contrast
-Normal neck, spinal, lumbar MRI
-Normal EEG
-Normal NCV/EMG both legs and arms
-Normal clinical neuro eval, although he did say i had brisk reflexes in my bad leg
-Normal podiatry eval

= stumped

I'm just stumped how I can have a normal NCV/EMG and still have sensory issues/balance issues. I guess my reg neuro is too which is why I think the ALS specialist is going to re-perform them.

So my balance/ankle instability/leg weakness don't seem alarming to anyone else? I figure I'm just ahead of the game and hyperaware of my body. Like I'm going to wake up tomorrow and have foot drop and be like, "I told you so" to myself.
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Old 03-24-2014, 10:20 PM #4 (permalink)
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Default Re: Another month of symptoms

Look, there are symptoms--things you know about, and signs, things the doctor will see, notice and measure. Doctors will make their diagnosis based mostly on signs they see, not on symptoms you tell them about. You're not trained to understand what your symptoms means nothing. Balance issues Perceived weakness mean nothing. Sensory issues don't point to ALS (though your untrained mind thinks it does.) Clean EMG means it's not ALS. Brisk reflexes might mean something--any of lots of things. Just relax and let your neuros do their job. Hard? Hel, wqe've all been through that...
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Old 03-24-2014, 10:49 PM #5 (permalink)
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Default Re: Another month of symptoms

A clean EMG should rule out ALS but, talk with the ALS Doc and keep us updated on your status.

Rick
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Old 03-25-2014, 06:26 PM #6 (permalink)
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Default Re: Another month of symptoms

Quote:
Originally Posted by Dusty7 View Post
Look, there are symptoms--things you know about, and signs, things the doctor will see, notice and measure. Doctors will make their diagnosis based mostly on signs they see, not on symptoms you tell them about. You're not trained to understand what your symptoms means nothing. Balance issues Perceived weakness mean nothing. Sensory issues don't point to ALS (though your untrained mind thinks it does.) Clean EMG means it's not ALS. Brisk reflexes might mean something--any of lots of things. Just relax and let your neuros do their job. Hard? Hel, wqe've all been through that...
Thanks Dusty. I needed to hear that...you are totally right.
I am totally making this more than it probably needs to be and needed the reality check.
My doctors are trained and all of them are telling me my tests are clean so I need to start choosing to believe them.
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Old 03-26-2014, 10:52 AM #7 (permalink)
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Default Re: Another month of symptoms

could be a long shot but what about inner ear issues? like vertigo? could cause a balance issue. If you have normal strength and they said your muscles seem to be working fine than could be that. Good luck at your appt. Keep us updated when you can..
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Old 03-27-2014, 05:58 PM #8 (permalink)
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Default Re: Another month of symptoms

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could be a long shot but what about inner ear issues? like vertigo? could cause a balance issue. If you have normal strength and they said your muscles seem to be working fine than could be that. Good luck at your appt. Keep us updated when you can..
This is exactly what the ALS specialist suggested as well.

Just got back from the appointment and he is stumped as well but guaranteed me it is not MS/ALS or anything neurological in his mind. At best he thought maybe small fiber neuropathy- but doesn't really think so. He really thinks its vertigo/inner ear and stress/anxiety. He performed a basic exam and said I show no signs of neurological deficits. He didn't feel the need to re-EMG me since my tests in legs and left arm were normal last month. He runs the MDA/ALS clinic in Dallas so I have to believe him and move on.

Thank you all so much for the input. I plan on doing the next ALS walk down here in Texas and pledging some time to volunteer efforts. No reason to not give back and what better than a disease I now know alot about. Blessings to all.
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Old 03-28-2014, 09:33 AM #9 (permalink)
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Default Re: Another month of symptoms

That is a totally great diagnosis. I am very glad for you that it is not ALS. Thanks for keeping us updated.

Rick
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