Old 02-15-2017, 06:21 PM #1 (permalink)
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Default Clean emg but still questions

Hi !

For almost 5 months now my tongue have strange behaviors. It fasciculates, twitches, ans sometimes get stuck between my teeths while i'm talking.

I've seen a neurologist last month who tell me that I should have an Emg done. Since then I got fgasciculations everywhere (stress I know...) I manage to find onespot in Montreal neurological hospital. Luckily, I learn before the test that the doctor who will perform the test it's one of Canada specialist of ALS.

The technician did the electrical shock part (NCV or something like that) on my four limbs. She could't say anything.

Then the doctor came in, ask me questions about my symptoms, do some test (reflex hammer, walking, tongue protrusion). Shethen stuck the needle in my right calves and right thigh. She then say that the examan was normal that theres aboslutly no sign of ALS. Shetoild me that we some others things can cause my tongue behavior, that we will do blood test and an MRI.

The technician then do more electrical test on my facial nerves (not fun at all!).

Questions:

1) Why would she exlude putting needle in bulbar region ? It's a bit of a worry for me since my problem is there ? I tend to have confidence in the doctors so I didn't ask her.

2) I read here and elsewhere that bulbar als could exist despite a clean limb emg. After 4-5 months of tongue biting/fasciculations. Would my mouth problems would be worse with ALS ?

3) Should I look for another emg that would include the tongue and/or bulbar region ?

Thnaks a lot in advance !

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Old 02-15-2017, 07:49 PM #2 (permalink)
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Default Re: Clean emg but still questions

The doctor examined you, including your tongue, and told you there is no sign of ALS.
Now you want strangers who can't see you to second-guess an ALS-experienced doctor?
If you don't want to ask your doctor, get a new doctor.
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Old 02-16-2017, 10:16 AM #3 (permalink)
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Default Re: Clean emg but still questions

Second guess the neurologist is not exactly what I was looking for. Like I've said, it bugs me a bit that the bulbar region wasn't checked since it's where my main problem is (beside fasciculations everywhere). Since she want to do other test it means that she aknowledge there is a problem in that region.

Also what i'm asking is that within 4-5 months of tongue biting and perceived slurring (thats me not other people), if bulbar als was progressing would I have more obvious/desabilating problems ?
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Old 02-16-2017, 05:00 PM #4 (permalink)
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Default Re: Clean emg but still questions

Also I forgot to mention that she want to see me again in three months. Maybe she's guessing somethimng and she want to see how it evolves (Bulbarl ALS ?). The bl;ood test and MRI could be also to confirm that it was ALS.

The only thing that ease my mind is that it would have been really unprofessionnal to say to someone nothing indicates AlS and that all tests where normal if in her mind ALS could be a possibility. Can sto thinking about why she have not stick her needle in the bulbar region.
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Old 02-16-2017, 05:23 PM #5 (permalink)
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Default Re: Clean emg but still questions

Any doctor will be honest with you. They don't "hide" things from their patients if they observe something wrong.

When you question a doctor's technique because you don't think they did the right thing, that's the very definition of second guessing someone. There's nothing inherently wrong with that, but the person to ask why a doctor did not test something is the doctor doing the testing. They can provide further information about their logic behind testing one thing and not another.

We here can not tell you what the doctor was observing and why they made the decisions they did. Your referring doctor will receive a report from the specialist that outlines what tests were conducted and what the specialist concluded. Ask your gp for the report and have a read. If you still have questions after reading the report, communicate them to your gp/specialist.
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Old 03-01-2017, 03:52 PM #6 (permalink)
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Default Mystenia Gravis vs ALS

Hi !

I've seen a neurologist specialised in ALS 3 weeks ago for tongue fasciculation and bitting and twitches everywhere (more of them since my stress is over the top), she done an EMG on right part of my body (calves, legs, and arm). She said that there's aboslutly no indication of ALS. She told me that we still have to do some testing (blood test and MRI) to know what the problem could be.

I've done my blood test today (waiting time because of a specific test that needed approval by the government or something like that). On the paper work I've seen that she test me for Mysthenia Garvis (antobodies and MUSK ?). When she have done the EMG she also ask the technican to do a specfic nerve test, she place me electrodes (the same as for NCV) on the face and gave me me many consecutive shocke. I guess this is also part of MG diagnosis.

Now my question, if the MG tests came back negative would it means that I got ALS despite she told me that theres's no sign of it ? Ive read many people here saying that negative MG testing was what determine them to have ALS.
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Old 03-01-2017, 04:00 PM #7 (permalink)
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Default Re: Clean emg but still questions

Mod note- merged post to keep all on one thread.
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Old 03-01-2017, 04:01 PM #8 (permalink)
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Default Re: Clean emg but still questions

Can the titlle be change to reflect my new question ?
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Old 03-01-2017, 04:50 PM #9 (permalink)
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Default Re: Clean emg but still questions

No you already had ALS ruled out according to the information you have given. If they also rule it MG all it means is you don't have ALS or MG
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Old 03-01-2017, 05:30 PM #10 (permalink)
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Default Re: Clean emg but still questions

Thanks Nikki but I guess I cant rule out ALS since she wants me to have another EMG in 3 months. She said that she doesn't think that would be any changes but still....
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Old 03-01-2017, 06:01 PM #11 (permalink)
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Default Re: Clean emg but still questions

No, Twitcher. Your posts were pretty clear. Your neurologist specifically looked for ALS, examined you, ran a very comprehensive EMG, and put her reputation on the line when she told you that you DO NOT HAVE ALS. Believe her.

The EMG is used for many diseases. Let her do her job the way she knows best. Believe me.
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Old 03-01-2017, 06:21 PM #12 (permalink)
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Default Re: Clean emg but still questions

Atsugi,
believe my that i'm trying very hard to rationalise all this and your message help me a bit in that way but i'm still asking myself why no emg in tongue, why another EMG, why, why, why....And ''very comprehensive emg', that is not what i call a 3 point emg that exlude the part with the main problem a comprehensive EMG....

My girlfriensdis gone for the week with the kids (school is off for them and her) and she told me to take that week to seek help. That she is begining to have a hard time dealing with my hypocondria. I know she is right, but when a ALS specialist told you something is wrong there's something to worry.
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Old 03-01-2017, 06:39 PM #13 (permalink)
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Default Re: Clean emg but still questions

Regardless of what you fear your Neuro thinks (note- NOT ALS), you need to get a handle on your anxiety. Seeking help for health anxiety is part of pursuing wellness and is absolutely critical for you. It is to the point that your partner has asked you to seek help while she has removed herself to go on holiday. This is a warning sign that you need to heed.

We are not dismissing your symptoms, however, being here and continuing an ALS dialogue after a neuro says "Not ALS" is not seeking help. Please consider finding someone to help you with your worries. There is absolutely nothing wrong with seeing a counselor or therapist to support you while you seek answers for your physical symptoms.
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Old 03-01-2017, 06:41 PM #14 (permalink)
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Default Re: Clean emg but still questions

Hi again, Twitcher.

Couple things. With respect:
A. You're not supposed to be here anymore. You were answered. Two really smart people with great knowledge and a lot of experience with ALS gave you their time and consideration. I also pitched in.
B. Your first paragraph: Unless you're hiding a medical degree and 10-20 years of neurology work, you don't get to second-guess your neurologist. Your neurologist is not going to tell you everything she is thinking, everything she finds, and how she arrived at her decision: she knows you don't have the intensive training needed to understand what she's thinking. So she just gives a vague "no worries about ALS. Come back in 3 months: because any more details would be too difficult to understand.

C. You could have mentioned that hypochondria in your original post. Go ahead and worry. But if you must worry, don't worry about ALS.
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