Old 03-17-2014, 02:31 PM #16 (permalink)
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Default Re: 8 years of symptoms/3 year update

If I were you, I would request copies of all my EMGs.

I have copies of all my EMGs, blood tests, MRI's, NCSs, ANS (autonomic nervous system test). They are yours and I believe you have a right to them and should have them ready if you get referred on to another specialist or go for another opinion.
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Old 03-17-2014, 03:42 PM #17 (permalink)
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Default Re: 8 years of symptoms/3 year update

Hi dusty,
I too have copies of all my testing, autonomic function test, reports, doctor notes, emg's etc.
thank you for all your help
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Old 03-17-2014, 03:59 PM #18 (permalink)
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Default Re: 8 years of symptoms/3 year update

Monster, why are you posting in an ALS forum? What makes you think you have ALS?
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Old 03-17-2014, 06:21 PM #19 (permalink)
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Default Re: 8 years of symptoms/3 year update

Monster, how can you say, "I think I'll call the office and ask for clarification if he SPECIFICALLY saw any PSW, MUP's, ins act. Etc."

And now you say, "I too have copies of all my testing, autonomic function test, reports, doctor notes, emg's etc."

If you have all the EMGs you don't have to call to ask what he saw. Just look at the report.
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Old 03-18-2014, 06:43 AM #20 (permalink)
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Default Re: 8 years of symptoms/3 year update

Hello dusty,

In post #10 of this thread I wrote what was written in the doctors emg report, I'm apologies for not making myself clear.

Emg findings:
Needle EMG of the left arm and leg covered C5-T1 and L5-S1 myotomes. We also tested L 5 paraspinal muscles. There were no abnormalities. SPECIFICALLY, we did not see fasciculations, fibrillations, or myotonia.

I've never seen a report written like this before. This was my third emg but by a different doctor. It read like he ONLY looked for fasciculations, fibs, or myotonia.

I was wondering if I should call the office for clarification because there was no mention of any ins. Act, psw, MUP's etc.

Again, I'm sorry for the confusion.
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Old 03-18-2014, 06:52 AM #21 (permalink)
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Default Re: 8 years of symptoms/3 year update

Atsugi,
In 2011 a neurosurgeon told me I had ALS. That was the original reason I came here.

After a Als clinic told me I was fine but my story went on...

I am now told I have umn syndrome, from a Als clinc, and told to come back every 6 months to look at progression.

I mean no disrespect to the cals or pals who deal with this horrible disease and I hope this thread has not offended anyone.
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Old 03-18-2014, 09:05 AM #22 (permalink)
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Default Re: 8 years of symptoms/3 year update

The EMG reports I have include a chart with ratings for ins. activity, fibrillations, fasciculation, MUPs (duration, amplitude, phases, turns). To my mind, that is an EMG study. What you have is just the doctor's summary. And that is for each muscle tested.
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Old 03-18-2014, 09:32 AM #23 (permalink)
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Default Re: 8 years of symptoms/3 year update

monster, your ongoing concern about ALS is understandable. If a person has ongoing ALS symptoms with no other diagnosis, then ALS/PLS is always on the table.

Regarding MUPs, when the neuro asks you to tense your muscle during the EMG, MUPs appear on the screen. In ALS, the MUPs are larger than normal (>2mv). So the neuro isn't looking for MUPs but looking at their size and amount. If the MUPs were abnormal, the report would have said that you had chronic neurogenic changes.
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Old 03-19-2014, 07:53 AM #24 (permalink)
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Default Re: 8 years of symptoms/3 year update

Hello dusty,

I found my chart. I'm not very knowledgable in all this stuff, so thank you for being so patient with me.

In the chart section, all the boxes say NORMAL or NONE, except the recruitment (FR) says 'decreased' and Activation was also 'decreased'-both in the L5 paraspinal. I remember him explaining I didn't give full force because of the pain.

After he told me my clinical exam was normal too but i know I have unm issues, it's just hard to trust there notes or reports.

As I mentioned before i am skeptical because of my 2012 emg.
That doctor NEVER wrote in the chart section what she found. She listed all the muscles and put NORMAL or 0 in all boxes in the chart emg report.

I asked at my 6 month follow up what she saw and THEN she admitted to me it was fasciculations!

Thank you again for the time and help you have given.
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Old 03-19-2014, 07:58 AM #25 (permalink)
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Default Re: 8 years of symptoms/3 year update

Hi bluedog,

My hometown neuro also agrees my concerns are understandable. He is the one who ruled out almost everything before sending me to a neuromuscular doctor.
It was all the neuromuscular doctors telling me "you don't have any disease in progress, You're fine", that has me so confused!

I just want to trust what my doctors tell me. I've expressed this to them in my appts too. Their contradictions of themselves and each other is what lead to all my frustrations.

Thank you so much for explaining MUP's to me.
I wish you the best in finding answers to your own health issues.
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Old 03-19-2014, 11:04 AM #26 (permalink)
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Default Re: 8 years of symptoms/3 year update

Bluedog, have you been diagnosed with ALS yet? Previously, as I recall... you were told by numerous neurologists, many times, you did not have ALS or even an MND. It's interesting you are now here giving advice. Have your personal problems somewhat resolved?
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Old 03-19-2014, 11:29 AM #27 (permalink)
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Default Re: 8 years of symptoms/3 year update

Monster, you wrote ("I just want to trust what my doctors tell me."). Then trust them. You do not have ALS or an MND. You have been told quote: "you don't have any disease in progress, You're fine", It is time for you (and others) to find another Forum. I sincerely hope you find the answers for your ills which are not MND related.
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Old 03-19-2014, 03:25 PM #28 (permalink)
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Default Re: 8 years of symptoms/3 year update

Al,
I appreciate what you are saying. Everyone should trust their doctors too. I agree with you.

You are right what the doctors have told me about 'no disease in progress'...

I am suppose to go back every 6 months to look at progression because I have UMN syndrome, which I am told there is no cure.

Yes, i do not have Als. My emg would've been different if I did.
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Old 03-19-2014, 04:59 PM #29 (permalink)
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Default Re: 8 years of symptoms/3 year update

Al, still no diagnosis yet. In fact, I recently went back to an ALS specialist I had seen three months previously because my speech is getting real bad, I'm choking on saliva more and more, and my walking is rapidly deteriorating. He said that I 100% don't have ALS. Said that without doing an EMG, and offered no explanation of what else it could be.

You don't need a diagnosis to know something about ALS. I've been researching ALS 24/7 for well over a year now, so I know a lot about the diagnostic process. It's not rocket science.

I can also identify with monster. Like monster, I know that some of my EMGs reports were fudged by the neurologist. I even had one neurologist say that the previous neurologist probably fudged the results because he knew my anxiety level was high and I might get upset. And the neurologist that said that fudged his report too! It's fudge city with these guys. Couple fudge city with limboland, and it puts a person in a pretty confusing place. The good thing is that I think they only fudge the reports when they feel the person doesn't have ALS.

My personal situation has improved somewhat Al. Thanks for asking.
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