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help1127

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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?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,356
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
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
 

Vincent

Senior member
Joined
Dec 30, 2013
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PALS
Diagnosis
08/2014
Country
CA
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ON
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.
Vincent
 

help1127

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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
 

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
Reason
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Diagnosis
11/2012
Country
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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.
 

help1127

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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.
 

Clearwater AL

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Joined
Aug 28, 2013
Messages
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12/2016
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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.
 

help1127

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Just seeing if someone on here knew. I keep getting blunt responses and Im still waiting on my report.

Thanks,
 

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
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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.
 

Angiegal

Distinguished member
Joined
Feb 15, 2017
Messages
301
Reason
PALS
Diagnosis
09/2015
Country
CA
State
Ontario
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.

Angie
 

help1127

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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.
 

help1127

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Greg the blunt respinces are from my doctor..
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,177
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
Help1127, I recommend you go see Dr August Joseph on Lee Road. He diagnosed my wife.
 

help1127

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Seen Dr Joseph the other day he said wow the last time you were here was back in 2014. Yea I been dealing with this for that long "sad" and still no answers. He doesn't know what's going on either he did his brief clinical taped on my knees ever so softly they didn't move so I had to grab his hammer and show him myself. Then he said oh yes they are brisk but not pathological. So with my issues I think I'm going to have to stick with the experts.

I have an appointment the up coming Monday with USF for a second opinion and an emg. I just fear I'm getting closer and closer to a ALS diagnosis. I just can't believe I been dealing with this so long. My entire life has changed. Not to mention my already existing anxiety which I'm now on Ativan 1mg 3 times a day and It doesn't even phase me. I don't feel as anxious so it's working. But this whole thing has me stressed, anxious and depressed. It's like living your life with a gun being pointed at you.

Im exhausted, tired and venting to those that have been given a diagnosis of ALS.

I spoke to Dr Pulley today over the phone. He basically said that the abnormalities in my eng were minimal and he could not give an ALS diagnosis based on it. I asked what can it be and he said it could be a hereditary or cognitive motor neuron neorapathy. Basically he doesn't know. He said it could be a spinal disease.

I'm just updating you guys and thanks for the support. But I'm so over it right now I feel like breaking down. Sorry i sound like a puss
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,508
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Help, (and you need it but not here).

("PLEASE, if only for the sake of your children, get the help you need. But that help is not here.")

That came from the FOURTH page of your first thread of 12/2/13.

It was from Ottawa Girl, Elaine, Moderator. Rest in Peace.

Below closes your case here... this page one page.

("I spoke to Dr Pulley today over the phone. He basically said that the abnormalities in my EMG were minimal and he could not give an ALS diagnosis based on it. I asked what can it be and he said it could be a hereditary or cognitive motor neuron neorapathy. Basically he doesn't know. He said it could be a spinal disease.")

You do not have ALS.
 
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