Can I have both ULM and LMN without ALS?

[lujrey]

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

 

[Nikki J]

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]

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]

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

 

[GregK]

Mod note: you did indeed post earlier; it was still open. Pls stay in one thread.

 

[lujrey]

Ok sorry for duplicating threads. I'll post here

 

[Nikki J]

There ARE other causes of spasticity including some metabolic issues. Let the doctors figure this out

 

[Vincent]

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]

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)