Old 07-16-2018, 08:33 PM #1 (permalink)
BrandonAZ's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
BrandonAZ BrandonAZ is offline
New Member (Say Hi)
BrandonAZ's Avatar
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
Default Progressive Nerve Symptoms

Hi All -

Longtime lurker (seems the norm around this forum though, right?). 35 / M / Married with two young boys, 1 and 5. I wanted to start off with my prayers to those of you who are or have been impacted by this disease, and commend the strong community shown in these forums!

Always been active, mostly weightlifting and running. ~3 years ago I woke up experiencing excruciating left pain in my arm and pinky numbness. Long story short, came down to a diagnosis of ulnar neuropathy, and underwent a nerve transposition at the elbow (where they move the nerve), which never resolved my numbness.

This is obviously separate from anything ALS, however, starting around this same time my left shoulder started constantly twitching, and progressed to constant pain / aching. Shoulder MRIs showed nothing, was Dxd bursitis and sent to PT for months. As time went on, the twitching spread to my left tricep / bicep and neck, shoulder pain continued, and strength was decreased slightly on that side through today. Neurologist thought maybe thoracic outlet, and underwent more PT + cervical MRI. Results were foraminal stenosis of the RIGHT (not left) side, no spinal cord impact, arthritis, and abnormal bone marrow - which blood work follow-up was normal.

Over the last year, twitches started occurring on the right shoulder / back / arm as well, and I've chalked this up to the above findings. However, over the past 6 months the twitching has spread to my legs / calves, increased in frequency, and just the past month has progressed to bad cramping as well. My muscles are fatiguing a lot more easily, and the twitching again has continued to progress in frequency / locations.

I had an ultrasound at the neurologists office today in the brachial area, with them trying to nail down this thoracic outlet dx, but blood flow was normal and no scar tissue in area, structurally was fine. They also noticed the twitching, and was able to capture it in the ultrasound in both my calves, left tricep, and left shoulder.

I have a scheduled follow-up EMG next Monday. Blood work has been normal with *possible* hyperthyroid (followup on that tomorrow), but the progressive and constant twitching of both upper / lower limbs, jaw, cramping, increased muscle fatigue has me a bit worried. I'll follow-up as I get the EMG results Monday. Bless you all!
BrandonAZ is offline  
Old 07-16-2018, 10:05 PM #2 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,197
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Very Helpful Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,197
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Progressive Nerve Symptoms

Youíve described lots of twitching, some pain, fatigue, cramping. You have not described any muscle function failure. So ALS seems highly unlikely. I donít expect EMGs to show otherwise, but let us know.
KarenNWendyn is offline  
Thanks from
BrandonAZ (07-24-2018)
Old 07-16-2018, 10:54 PM #3 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,965
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,965
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Progressive Nerve Symptoms

Hyperthyroidism can provoke twitching as can many things. There's also a condition called cramp/fasciculation syndrome.
None of your post sounds like ALS so I'm hopeful the EMG and any additional testing can identify what you're dealing with.

Let us know and best wishes.
KimT is offline  
Thanks from
BrandonAZ (07-24-2018)
Old 07-23-2018, 06:55 PM #4 (permalink)
BrandonAZ's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
BrandonAZ BrandonAZ is offline
New Member (Say Hi)
BrandonAZ's Avatar
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
Default Re: Progressive Nerve Symptoms

Quick follow-up:

Went to neurologist today, who decided not to do an EMG. Instead, he's referring me to a neuromuscular specialist to perform the EMG and evaluate / dx.

One thing to note, I've had left trap / sternomastoid atrophy and weakness progress over the past year (accessory nerve component maybe?) which I've been bringing up to him. He didn't seem too concerned about it up to this point, and when I brought up again he just mentioned the specialist would be able to look over everything.

At this point I'm convinced of some type of MND and it's just a matter of diagnosing with the specialist. Hopefully I'll get some answers soon. I'll update again once I have my visit.
BrandonAZ is offline  
Old 07-26-2018, 07:08 PM #5 (permalink)
BrandonAZ's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
BrandonAZ BrandonAZ is offline
New Member (Say Hi)
BrandonAZ's Avatar
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
Default Re: Progressive Nerve Symptoms

Well, end of August is the soonest the specialist is able to get me in due to summer vacations. This should give me some time to focus on other things, but the constant twitching / cramping make it so hard!
BrandonAZ is offline  
Old 07-26-2018, 09:02 PM #6 (permalink)
Clearwater AL's Avatar
Very Helpful Member
 
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,353
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Clearwater AL Clearwater AL is offline
Very Helpful Member
Clearwater AL's Avatar
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,353
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Default Re: Progressive Nerve Symptoms

Brandon,

Until your appointment try and direct as much time as you can to humor.

Humor often gives a release from stress, being anxious and many times
actually takes ones mind off the aches and pain they maybe feeling.

Don't know what TV (satellite or cable) you may have. Many libraries have
DVDs available. Comedy channels or movies... to help pass time.

However it may be available to you... give humor a chance until you
have your appointment.
Clearwater AL is offline  
The Following 2 Users Say Thank You to Clearwater AL For This Useful Post:
Atsugi (07-26-2018), BrandonAZ (08-10-2018)
Old 08-10-2018, 12:03 AM #7 (permalink)
BrandonAZ's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
BrandonAZ BrandonAZ is offline
New Member (Say Hi)
BrandonAZ's Avatar
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
Default Re: Progressive Nerve Symptoms

Im able to get in sooner (later next week) with the specialist. I've been doing better in trying to be somewhat distracted (and humor certainly helps, thanks Clearwater AL). The twitching / cramping is getting even more severe, looking like a bag of worms in my calves along with the cramping bordering painful mostly in my left leg. Also my left hand is getting tougher to do things with (lift boys, groceries), but no full on failing yet. Hopefully I'll walk away with more answers than questions at the appointment coming up.

About weakness, how fast is the progression? Meaning, is it an overnight type deal where I can't use my hand to that's something to keep an eye out for, or is slow progression in weakness also significant?
BrandonAZ is offline  
Old 08-10-2018, 07:53 AM #8 (permalink)
IgorZilio's Avatar
New Member
 
Join Date: 2017
City: Rio de Janeiro
State: RJ
Country: BR
Diagnosed: 05/2018
Interest: I have been diagnosed with ALS.
Posts: 51
IgorZilio is on a very distinguished road
IgorZilio IgorZilio is offline
New Member
IgorZilio's Avatar
Join Date: 2017
City: Rio de Janeiro
State: RJ
Country: BR
Diagnosed: 05/2018
Interest: I have been diagnosed with ALS.
Posts: 51
IgorZilio is on a very distinguished road
Default Re: Progressive Nerve Symptoms

Brandon,

Progression is highly variable. Loss of function can happen overnight, over days, months or years. Speed up or plateau. Check the thread "Rate of disease progression" under "General Discussion About ALS/MND" to see some examples.
IgorZilio is offline  
Old 08-16-2018, 09:53 PM #9 (permalink)
BrandonAZ's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
BrandonAZ BrandonAZ is offline
New Member (Say Hi)
BrandonAZ's Avatar
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
Default Re: Progressive Nerve Symptoms

Saw a neuromuscular specialist today, EMG setup for next week.

Based on clinical and history, he's leaning towards CFS instead of a MND, but the EMG will help hone in on his initial take. He did say we'll likely test for a voltage (something or other) antibody after EMG results, and possibly do IVIG or some medication depending on findings, but to cross that bridge if/when we get there. Possibility that my immune system is over-reacting, causing irritation to the nerves. He also mentioned they'd like to monitor me over the next 3 - 6 months to gauge progression of all of this, which doesn't calm my anxiety any, but I'm glad I'm in the right hands now and getting some answers.
BrandonAZ is offline  
Old 08-23-2018, 02:56 AM #10 (permalink)
BrandonAZ's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
BrandonAZ BrandonAZ is offline
New Member (Say Hi)
BrandonAZ's Avatar
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
Default Re: Progressive Nerve Symptoms

I had my EMG today (performed by the neuromuscular specialist). He noted fasciculations obviously, but said no nerve damage in lower left limb. One concerning part was the needling of my thoracic paraspinals, I kept hearing the fast tapping noise and he kept telling me to relax the muscles, even though I was. He didn't mention specifics from what he found other than what I mentioned on the lower left limb and said he didn't see much nerve damage.

He asked how long I've had the twitching (just over a year but progressing) and if I've been noticing weakness (left shoulder with mild atrophy), and said if it was MND, it likely would have been more obvious by now, but can't be fully certain that it isn't. After 1 to 2 years of monitoring, then he's able to give me that certainty if it doesn't progress.

Got blood drawn for the VGKC antibody, and will continue to be monitored for the next 1-2 years with another appointment in 3 months. Looking for some reassurance in all of this, but I know it's all a wait and see really. Any thoughts?
BrandonAZ is offline  
Old 08-23-2018, 05:39 AM #11 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,522
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,522
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Progressive Nerve Symptoms

My thoughts are, this latest exam and testing continue to argue against ALS.

What happened with the hyperthyroidism workup?
lgelb is offline  
Old 08-23-2018, 10:54 AM #12 (permalink)
BrandonAZ's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
BrandonAZ BrandonAZ is offline
New Member (Say Hi)
BrandonAZ's Avatar
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
Default Re: Progressive Nerve Symptoms

I was referred to an endocrinologist who did additional blood work, and said everything was normal - couldn't see anything that would be causing my symptoms. They kind of gave me an attitude on why I was even there :/
BrandonAZ is offline  
Old 08-24-2018, 05:41 PM #13 (permalink)
BrandonAZ's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
BrandonAZ BrandonAZ is offline
New Member (Say Hi)
BrandonAZ's Avatar
Join Date: 2018
City: Seattle
State: Washington
Country: US
Interest: Other
Posts: 8
BrandonAZ is on a distinguished road
Default Re: Progressive Nerve Symptoms

One more thing to note to note, is I've been trying to keep at my PT exercises, but my left shoulder has been progressively getting weaker during exercises, along with the atrophy I mentioned (trap area / deltoid). It's been slow, but a definite progression in both atrophy and strength specific to that area, especially when looking back a year ago.

Not fully knowing with assurance is the toughest part so far. Thanks to all for your input and advice.
BrandonAZ is offline  
Closed Thread

Tags
als, arm, back, cramping, diagnosis, emg, fatigue, muscle fatigue, muscles, neurologist, pain, running, shoulder, story, symptom, symptoms, twitches, twitching, ultrasound, wanted, work, worried, young


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
18 Months - Progressive Symptoms Rounder78 Do I Have ALS? Is This ALS? 12 11-14-2016 04:55 PM
Progressive symptoms... corwin Do I Have ALS? Is This ALS? 21 10-02-2016 03:36 PM
progressive symptoms amyecpa Do I Have ALS? Is This ALS? 5 07-03-2010 10:00 PM
Progressive symptoms of ALS - no diagnosis bala80 Do I Have ALS? Is This ALS? 10 01-06-2010 11:42 PM
Wondering about progressive symptoms NC guy General Discussions About Fibromyalgia 6 05-18-2009 07:04 AM


All times are GMT -5. The time now is 02:15 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016