Reassurance from Neuro's Clinical exam?

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Reassurance from Neuro's Clinical exam?

Postby ScaredWifesHubby on September 23rd, 2014, 3:10 pm

Hello everyone,

I've posted on here before and shared how I'm trying to help my wife with her concerns over various symptoms she has been experiencing. Of course one of the main themes I try to share with her from this site is that if there was anything to do with A**, then she would have issues with weakness. I point out that her strength tests performed by the Neuros have always been fine, and when we do them our own, they again show no signs of weakness.

But this week she asked me a question I could not answer, so I'm hoping someone here has the expertise to provide me with a solid answer which I can pass along to her. She said she understands that the muscles involved in the test the doctor performs show no signs of weakness, but they only have time to test so many muscles. There are lots of muscles in the foot, lower leg, upper leg, and hip area, and she experiences twitching across these various locations. We looked up the muscles addressed in each of the strength test done by the Neurologist, and noticed these tests only target specific muscles, and certainly don't cover all of the muscles in the feet, legs, arms, and hands.

She has seen a couple of different neuros and a couple of neuromuscular specialists at the Cleveland Clinic and they say if their clinical exams are good then there is no real need to do an EMG because their clincial exam tells them what they need to know (ie: a good exam means no concern about A**). I have read many here who have been told the same thing. She had an EMG early on when her symptoms first surfaced (nearly 2 years ago now - and it was fine), and they keep telling her now that she doesn't need another EMG because her clinical exams are fine. But she feels she has had progression of symptoms (lots of twitching, some foot cramping, etc) over the last 2 years since her EMG, and she does not know how much comfort she can really take in the clinical exams being OK at this point, because they only test a subset of the muscles in a limb during those exams. What if the muscle(s) where the weakness is starting is (are) those which are not covered by the exam?

This week in particular, she has had a constant twitching in a specific upper leg muscle, and when we looked it up, we found that it wasn't one of those covered in the Neuro's strength tests. Since A** starts in a muscle then eventually spreads to other muscles, she wonders how she can take any comfort in the doctor's strength test. "They could just happen to be testing a muscle which isn't effected - YET", she said to me. "It could just be starting in one of the muscles which he doesn't test, which is why my strength tests are fine, but there could still be something else going on with the muscles which are twitching".

I wasn't sure how to respond to that question. Does anyone out there know why a person should take comfort in the neuro's exam when it doesn't test the strength of every muscle, especially the ones which may be twitching?

Appreciate any helpful explanations you may have.

Dan
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Re: Reassurance from Neuro's Clinical exam?

Postby Yuliasir on September 23rd, 2014, 3:40 pm

Hi,
I will try to answer your wife's questions.

Muscles in the body are not isolated but form a kinematic system. If there is a weakness in one link, the whole system would be functioning differently. For example, to flex a finger, you need your forearm muscles to work properly. To flex the hand in the elbow, you need your upper arm muscles working properly etc. So in fact neuros do not test a single isolated muscle but the whole system.
next point is that clinical exam is not only exam for muscle strength. Before muscle strength fading, people usually have another significant neurological featyre - they start to loss reflex arches in a very special way - first strong hyperreflexia, asymmetric one, then reflexes just vanish and then weakness comes in.

Then, since in 2 years your wife had nothing but slightly increased twitching but nothing like paralysis in any muscles, then it is definitely not MND becasue usually people who are 2 years in neurodegenerative disease demonstrate clear neurologicla loss (can not use hands or walk or speak and ooften all that combined to a certain degree.

She can 100 % be confident about her clinical exams as they confrim her neuromuscular system is still intact and operating and just hyperexcited in a chronic way as it happens to us BFS people. try to convince her not to look for where the dcotors can miss something but instead look for her basic problem which is definitely fear of ALS.

The fact she can stand and walk is itself a strenght test for tigh muscle, by the way.
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Re: Reassurance from Neuro's Clinical exam?

Postby terry in sf on September 23rd, 2014, 4:19 pm

Well, at some point your wife will need to accept the BFS diagnosis and move on. While a BFS diagnosis is not a guarantee against some future other unrelated bad diagnosis, experiencing "more of the same" (even if the location, frequency, etc. are different) should not re-trigger the fear.

The only real response to this question is to take it to its (illogical) conclusion - is she going to insist on having monthly/annual/whatever EMGs for the rest of her life, just for reassurance that she doesn't have something else/worse? If the test results are fine, you can trust them for the moment - but what about next week? Next month? Next year? Five, ten years from now?

I understand this fear, because I'm back here after going through all of this myself 7+ years ago, but I also have the benefit of having eventually come to the realization that there is no guarantee about anything, much though we would like one, and we have to enjoy the present day and (somehow) stop endlessly worrying about what might happen sometime down the road. If the news was good, and you're feeling well, even with the twitching, pins & needles, cramping, buzzing, etc., take it as being true and don't ruin today with worry of what could happen.

Hugs to you. I know this is hard.
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Re: Reassurance from Neuro's Clinical exam?

Postby ScaredWifesHubby on September 23rd, 2014, 9:13 pm

Yulliasir - thank you for your well though out and logical reply. That makes a whole lot of sense. You always put a lot of thought into your responses and really try to provide meaningful answers to help people. I really appreciate you sharing your expertise.

Terry - I appreciate your response as well. I know you are correct in what you say, it's just a hard thing to get through to someone else who is so worried. I will keep trying though.

Thank you both so very much.
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