Status
Not open for further replies.

lujrey

New member
Joined
Nov 16, 2016
Messages
3
Reason
Learn about ALS
Country
US
State
Texas
Hello,

This is my first post here, and I hope to learn more about the members of this forum and about the potential signs of this terrible disease

I'm a 30 years old Hispanic male living in the US. In July 3, 2016 I started having body-wide fasciculations; they were in very single muscle from my feet, hands, to my buttocks, back and eyes.

In September 1, 2016 I went to see a Neurologist and he did an EGM (with needle only in 10 muscles). He said that the EGM came "clean", but when I received the report in the mail it read "Diffuse distal denervation consistent with Polyneuropathy"

Since I wasn't satisfied, I went to see another Neurologist who did a very indepth clinical analysis and he came up with: NO weakness, NO pathological reflexes, BRISK reflexes in right leg and spasticity in right leg. This doctor send me to have another EGM but there were no dates until February 2017.

I do feel some slight effort to walk with my right leg, but I can run 10 miles, squat 300 pounds, single leg calf raises with weight, etc.

I'm obviously terrified and as the single provider for my young family, really scared about their future

I have gotten myself to a state of total fear by noticing that I have both LMN (twitches or fasciculations) and UMN (spasticity and brisk reflexes). This coupled with the denervation caught by the first neurologist (who might have missed other stuffed)

Question: can other diseases show both UMN and LMN? have you seen cases like me that end-up not getting diagnosed?

By the way, I have been pushing my doctors to tell me if this is even "possible" ALS and they don't want to say the words, but I do show UMN and LMN confirmed by them (not with that name, but "spasticity" and "fasciculations")

Sorry for the long post, and thanks for any comment. God bless you all
 
Last edited:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,223
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Firstly you have confused umn findings ( spasticity and hyperrefexia) with lower. Fasciculations can not be termed a lower motor neuron finding since, as you would know if you read the sticky properly, twitching is non specific and many many people get it with no pathological issues at all.

Spasticity and refex issues can be indicative of many things and are also somewhat examiner dependent. You should call the doctor say you saw your emg report and that you are concerned. The doctor should explain what it means in your case. What did doctor 2 say other than another emg?

There are many patterns of denervation found on EMG indicating many different problems. Your summary indicates they did not see the pattern of ALS
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
894
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
You say you can run 10 miles and squat 300 lbs? What the hell made you think you might have a disease whose hallmark symptom is weakness?
Vincent
 

lujrey

New member
Joined
Nov 16, 2016
Messages
3
Reason
Learn about ALS
Country
US
State
Texas
very distressed: UMN signs confirmed

Hello friends,

I am here again with a heavy heart and immensely sad. I posted a few weeks ago that I had had some LMN and UMN signs (mod note: threads merged. Link deleted)

I have good news and bad news:

My first neurologist confirmed that my EMG was clean: no fasciculations, fibrillations or PSW

The very bad news is that a second neurologist confirmed spasticity and brisk reflexes (3+) in my right leg. Now the very bad news is that he run ALL possible tests to try to find the source of the spasticity: MRI with contrast of all spine, brain, etc. Cerebrovascular studies, etc. and he could not find the cause of the spasticity

My fasciculations have been NON-stop (thousands per day) for 5 months and now this confirmation of unilateral spasticity with brisk reflexes.

I'm trying to get referrals with specialists but you all know how long this can take

I'm in a state of complete disarray. I understand that only time will tell and that only spasticity with twitches are not enough to give a diagnosis... but if they have confirmed that there is nothing to tell where the spasticity comes from... there are not many differential diagnosis... are there?

Any words that help my mind and soul will be appreciated.

God bless you all
 
Last edited by a moderator:

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
Mod note: you did indeed post earlier; it was still open. Pls stay in one thread.
 

lujrey

New member
Joined
Nov 16, 2016
Messages
3
Reason
Learn about ALS
Country
US
State
Texas
Ok sorry for duplicating threads. I'll post here
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,223
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
There ARE other causes of spasticity including some metabolic issues. Let the doctors figure this out
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
894
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
Re: Fearful and in real need of support

If you have a clean emg there is no way you have ALS. At no point in my daignostic process did I ever have a clean emg. They just could't or wouldn't say what it was. Lucky you. Enjoy your long life. Get help with anxiety.
Vincent
 

bigmark1954

Senior member
Joined
Jan 31, 2014
Messages
995
Reason
PALS
Diagnosis
01/2014
Country
US
State
utah
You say you can run 10 miles and squat 300 lbs? What the hell made you think you might have a disease whose hallmark symptom is weakness?
Vincent
Hey Vince......I squat 350 lbs every time I take a dump!8)
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

We appreciate your understanding and cooperation!

I've Disabled AdBlock
No Thanks