Neuro appt at hospital today -Results (2 year, 2 mo. update)

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Neuro appt at hospital today -Results (2 year, 2 mo. update)

Postby Xina535 on October 1st, 2015, 8:04 am

Told him my current symptoms:

Whole Body:
    Widespread twitches since July 2013. Sometimes they died down to almost nothing, but sometimes got really bad. They die down to almost nothing (if not totally) when I take Flexeril. They have died down a tiny bit before with electrolytes, but not much.

    No real cramps, but pains like as if something were about to cramp, random spots.

    Myoclonic jerks, a few a day

    A feeling of being fully charged, whole body, like as if I am plugged in.
Left arm pain, twitching, burning, comes and goes since December. Also a feeling like the strength never really fully came back.

Right hand, changed/clumsy/awkward grip, pulse/energy stream feeling through Thenar

Left leg, feeling of hot water running down my leg. Right now, at least once a week.

Explained that no one can tell me what happened to my arm. The neuros have different opinions (one said Plexus Brachial Neuritis, the other two did not agree with that, but had no idea what happened). That I was diagnosed with BFS in 2013. MRI of brain was normal, but I do have 2 herniations in my neck. That my ANAs have always been positive, but not "enough" positive to determine anything. Also one time I had abnormal immune lab results.

He wanted to see the ANAs, the immune labs, the other neuro reports, lyme disease test (which was negative), but did not want to see my brain MRI or neck herniation reports.

He asked if my twitches worsen with exercise. I told him I am not really sure, but lean towards no. They do increase with stress for sure.

Work up/tests:

EEGs (brain waves) of each arm (median nerve) were normal. Though, I saw the report and my right side values were way lower than the left side.

Strength test was normal.

Reflexes were normal.

Gait, eye movement test, other clinical exam stuff, normal except he saw my twitches.

EMG of right shin muscle, normal except one positive sharp wave. No twitches detected.

EMG of right inner thigh/above knee area, normal. No twitches detected.

EMG of left deltoid which was abnormal and clinically weak before, was normal.


He said that with twitches, if they were due to a muscle illness, there would always be something else present, like abnormal reflexes or gait, or weakness. He said twitches don't come and go or go on or so long (with me since July 2013) in a muscle disease without something else present. Otherwise, if alone, they aren't important.

The EMG lady was with a doctor (I think one of those student doctors who do rotations) in the room, and talked to him as she was doing my EMG. In the part where she asked me to press really strong against her, she said to the doctor, "Yea good, there are (insert medical term here) and the other patients, they can't press hard like this against force and their waves are not so compact."

That reassured me a lot.

She really took her time, left the needle alone for awhile in my leg, and she even provoked and poked the needle to try to find something.

But when she told me him that there was a positive sharp wave, I felt this rush of HE*L come over me! I felt my blood erase from my face. l was waiting to hear fibrillation or something else out of her mouth. I was at my highest height of anxiety.

She said though, that if one area showed that, it could mean that the needle damaged the nerve, and in those cases, they check another area to make sure nothing shows there, and that was the case with me. The other spot was normal. Also, the place in the shin (with the positive wave) hurt the worst of the 3 places. It is the only one which stings. Actually, the needle in my left arm, I didn't even feel. I told her, "I don't feel the needle! It not only doesn't hurt, I can't feel it!", so she poked around more, still nothing, then a little more, and finally, I could feel the needle.

Back to the doctor, he said no serious disease. He said I need to get on a pain therapy for my arm (STILL don't know what caused this in my arm), that the ANAs yes are positive, but not enough to determine anything. The EEGs and EMGs were normal as far as he is concerned.

I asked him if he knew if Flexeril would make the twitches go away in patients with ALS, and he said he didn't know because Flexeril is not available here, he is not familiar with it. He said that he would assume it would help in any patient who has twitches and/or muscle cramps.

He said to keep taking the electrolytes over a longer period of time.

He will send his report and official test results to my primary care doctor. He said that I am welcome to come back as a stationary patient if something were to change, but he does not expect it will.

PS - about the positive waves found in an EMG:
http://www.ncbi.nlm.nih.gov/pubmed/8559172

(thanks, misterjuan, for the link!)
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Re: Neuro appt at hospital today -Results (2 year, 2 mo. upd

Postby Yuliasir on October 1st, 2015, 10:10 am

Well, looks like extensive exam, nothing missed, all emg normal and STRENGTH TESTS are normal. so definitely the issue is not denervation duer to MND. Good news!

Hope this could help you becasues you are for a long time in it, so probably you could feel more cofidence regarding the future.
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Re: Neuro appt at hospital today -Results (2 year, 2 mo. upd

Postby RIno468 on October 5th, 2015, 5:24 pm

Xina!

Congrats!

You are more or less healthy! you don't have ***!!!!!
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Re: Neuro appt at hospital today -Results (2 year, 2 mo. upd

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