What a journey - worried about ALS - former Cancer Survivor

[Eagle7]

Hello everyone - Let me start by saying you all have been excellent in guiding the users here. You approach each person with respect and understanding and bring great expertise from your own experiences.

I have read the sticky notes and many other posts.

My story - I am 47 years old male. I am a testicular cancer survivor for 22 years. No issues for the last 21 years and have annual oncology check ups. Other than that, no major medical issues.

During this past summer (May / June 2018) I notices very infrequent muscle twitching. 1 or 2 times a month random places - did not think anything about it.

September 2018 I noticed I would wake up with a "charlie horse" in my right calf. (2 times) It was sore for a few weeks after that but again did not think anything about it.

During the summer I noticed short term memory issues but not sure why.

Late October 2018 my body went into intense random all over body muscle twitches. met with the Oncologist on my annual checkup - he performed chest x-ray, blood work and said all looked fine.

PCP referred me to Neurologist - Neuro did quick physical exam - and scheduled and EMG.

During this time I only had muscle twitching and no weakness.
The EMG was normal (performed on both legs and back) and the nerve conduction study was normal.

1 Week later (Nov 17th 2018) my right calf felt weak - heavy - and most (80%) of the twitching has now settled into the right calf.
I noticed I stumbled going up sort stairs but could still climb.
The sensation has never went away.

Primary Dr. did Brain and Spine MRI - normal.

I know the Sticky says - the muscle just quits:
1. how does that feel or progress? Does it really just stop?
2. If only a few fibers are currently not responding how can the muscle be dead or stop?
3. I don not know if I have clinical weakness or not, I know I can't walk as far or stand as long (could stand for 20 mins now only 10 mins). But I can walk.

My leg feels like it has constant DEEP twitching with occasional surface twitching. It is tight and larger than my right leg. No pain in the leg, just feels "heavy".

I have obviously had severe anxiety about this and taken Lexapro for 3 weeks now that seems to help.

I am stuck with the confusion around "Normal EMG = No ALS" when there is conflicting info out there. Was my EMG too early?
How ealry is too early?
This has wrecked our lives and I would welcome any thoughts and guidance.

I have a follow up Neuro apt in 2 weeks.

Please help me sort out real concerns from worries.

 

[KarenNWendyn]

If one calf is tight and larger than the other, then do have it examined ASAP. If the doctor is concerned, s/he will order an ultrasound to rule out a blood clot or other structural reason.

In terms of your other questions— normal EMG rules out ALS and would not have been done too early, You are seeing neurologist in 2 weeks, so s/he can re-examine you if you are convinced there is new weakness. I’m betting they will clear you of ALS.

Your question as to whether a muscle can just go suddenly — yes it can. But in terms of function, many muscles are involved in performing a function. So often the function is lost in stages especially if it’s a complex function like walking. A person may develop a foot drop first but can still walk because other muscles compensate. But over time, those compensating muscles will go, and the gait becomes more labored until walking becomes impossible.

 

[Vincent]

The process is this- Due to an unknown cause, motor neurons begin dying and keep dying- chronic denervation. Your body compensates by growing new attachments at the neuromuscular junction, chronic renervation. When the loss starts outpacing the renervation, which starts happening faster because the nerves that are left are stressed by carrying the load for the dead ones. When you reach about 70% nerve death the muscle fails. There is a sliding scale that goes from normal function to paralysis that your doctor can asses, not something you can do at home by yourself. This is why an EMG will show denervation long before you would notice symptoms. That is my layman's version of how ALS progresses.

 

[Eagle7]

Is there an average time most experience changes in physical weakness? Are they seen daily? Or over 6 months to a year? For example, would I notice more and more weakness symptoms every few days?
I’m just looking for the community to share their experience. Also, any experience with EMGs during this time? We’re they dirty at first or clean then dirty? My first EMG was clean but was done when I had twitching and no weakness, the weakness came 1 month later.

 

[Eagle7]

Determining Spasticity in UMN onset

Can someone explain what UMN onset ALS looks like? Most articles state spasticity and ridged muscles. Is this noticeable? Is there any evidence of UMN onset that can be found on an EMG?

 

[lgelb]

Eagle, your questions reveal an unhealthy obsession considering you boast a clean EMG and no confirmed clinical weakness. You asked in your first post that we help you parse real concerns from worries. ALS is not a real concern for you.

As Karen says, your leg should be examined and any necessary testing, e.g. for DVT, conducted. We see no connection between your history and ALS.

Best,
Laurie