Old 06-18-2017, 03:14 PM #1 (permalink)
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Happy fathers day.

I have been here for almost 4 years. I had several clean emg's until my last one where my doctor found chronic denervation in my two calf muscles nothing on my thighs or left arm. My doctor said he thinks I may have some type of heriditary motor neuropathy bUT my NCS was clean and I have brisk reflexes all over, positive Hoffman and I can induce clonus by lifting my heel and push it down not all the was and my leg will bounce until I bring my heel down. He said I don't have ALS because I have no sign of weakness.

The problem I have is that I do feel weakness in my legs especially when walking down stairs my legs will shake, plus my left leg doesn't feel like my right. When I say it doesn't feel the same it's that I feel my left leg being normal and my left feels dull and weak. I said this to my doctor but he said he doesn't see weakness.

I been on this roller coaster from its all anxiety to a possible diagnosis of motor neuropathy. But he can't confirm it yet.

Has anyone been through the same situation?
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Old 06-18-2017, 03:19 PM #2 (permalink)
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Default Re: Concerned

Mod note: you are not diagnosed with any MND at this time. Please respect our rules and post in the DIHALS section. You have been here 4 years you do know the rules. Thank you
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Old 06-18-2017, 07:55 PM #3 (permalink)
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Default Re: Concerned

4 years and still trying to get diagnosed with a terminal disease. Try to stay off this type of site and get help with anxiety. Being here is not healthy for you. Having ALS is enough, we don't have the energy to massage people's neuroses.
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Old 06-18-2017, 08:55 PM #4 (permalink)
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Thanks for your responce Vincent. If you read my message you can see that I have had several clean emg's until a month ago when I showed issues with my calf muscles. I also know of it taken 4,5,6, years before they got an official diagnosis.

I know PALS on here are going good above and beyond trying to reassure people when they here stories like mine. The problem with that is, that ALS affects everyone differently. To the majority of PALS it took a year or 2 to get a diagnosis while it took many others a few years.

I'm just seeing if anyone with or without ALS on here has been through the same ordeal?

Thank you
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Old 06-18-2017, 09:24 PM #5 (permalink)
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Default Re: Concerned

Go to your post and scratch every sentence that contains the word 'feel'. I am in my 5th year and I 'feel' no different than I have for the other ~49 years.

But you should already know that.
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Old 06-20-2017, 06:38 PM #6 (permalink)
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I have another question and hopefully someone can explain this as. The first emg my doctor did at UF said that I had radiculopothy based on the EMG. Now he is saying it's not radiculopothy due to my NCS being clean. He said that if it was radiculopothy it would also show up on my NCS.
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Old 06-20-2017, 07:17 PM #7 (permalink)
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Default Re: Concerned

Help1127, I believe back in 2015 you were told by a very knowledgeable member... "MRIs and nerve testing can disagree for good reasons, most of them not catastrophic".
The question you are almost asking again would be best for your Neurologist.
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Old 06-20-2017, 07:34 PM #8 (permalink)
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Just seeing if someone on here knew. I keep getting blunt responses and Im still waiting on my report.

Thanks,
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Old 06-20-2017, 07:59 PM #9 (permalink)
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Default Re: Concerned

You're complaining about 'blunt' answers?

Go back to whoever gave you the exam and ask them for a detailed explanation. We aren't doctors, in case you were under a misimpression.
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Old 06-21-2017, 01:41 AM #10 (permalink)
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Default Re: Concerned

Help1127....
You've been posting here since 2013? Really?
I guess you probably know that it would be best to get medical advice from a doctor.... Strangers (even those you've been posting at) on the internet REALLY can't give you what you're looking for.

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Old 06-25-2017, 11:48 PM #11 (permalink)
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I know it seems nuts that i have been posting here for so long, abd I truly have asked my doctors what they think. At first it was ohh anxiety, then anxiety with brisk reflexes, now you probably have some type of cognitive or heriditary motor neuropathy. Which to me doesnt make sence as i cand find anything on motor neuropathy that shows up with some upoer motor neuron issues such as brisk reflexes, positive Hoffman, and a clean NCS. Still waiting on my records and I will take them to my othe ALS specialist for a second opinion.
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Old 06-25-2017, 11:49 PM #12 (permalink)
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Greg the blunt respinces are from my doctor..
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Old 06-26-2017, 04:04 AM #13 (permalink)
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Help1127, I recommend you go see Dr August Joseph on Lee Road. He diagnosed my wife.
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