Neuromuscular Testing and Waiting for ALS confirmation

Hello @gcranor, Did your doctor mention they are trying to determine if your pain is due to previous spinal fusions or possibly Amyotrophic lateral sclerosis (ALS)? Mayo Clinic has some information on their website that talks about diagnosing ALS that may answer some of your questions -- https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/diagnosis-treatment/drc-20354027

Hello, I’ve heard of Thermography to detect pain. It’s invasive, no radiation. Not sure if it can detect ALS. What kind of pain or problems are you experiencing?

Here is a little info about a nerve conduction study. Ive had them - not very uncomfortable at all. They confirmed a diagnosis of Muscular Dystrophy 2 in my case - so they are very effective at ruling in or ruling out issues.

“Electromyogram (EMG). Your doctor inserts a needle electrode through your skin into various muscles. The test evaluates the electrical activity of your muscles when they contract and when they're at rest.

Abnormalities in muscles seen in an EMG can help doctors diagnose or rule out ALS. An EMG can also help guide your exercise therapy.”

The above is from the link that was shared earlier by John:
https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/diagnosis-treatment/drc-20354027
A good link for an explanation of the procedure:
https://www.mayoclinic.org/tests-procedures/emg/about/pac-20393913
Also here is a good link that describes the procedure in good detail and what to expect:
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/electromyography-emg
Peace
Larry H.

I had an EMG that was inconclusive. Neurologist said either ALS or Inclusion Body Myositis; therefore I had a muscle biopsy last week to help determine what it is. I am really struggling with staying positive and looking forward into the future. I have been feel unwell for 2 years now and am feeling pretty hopeless. How do people stay positive. I feel like there is absolutely no one to talk to about this,

Macy, I would like to welcome you to Connect. I'm sure this is very unsettling for you. You are always welcome here. A long time ago, I watched my aunt face cancer. She had such a positive attitude and it helped keep that cancer at bay for many years, actually for about 10 years. I learned then, that patients do have power in their healing. When I was facing spine surgery that scared me, I read as much as I could about the research on the subject, and knowledge also is power. I also had to face my fear and figure out how to get past it, and I did. I found some other discussions where you may be able to connect to patients or family members facing similar issues.

I checked some other discussions here and patients with Inclusion Body Myosistis are talking about walking and warm water therapy pools that help them physically. Here is the discussion and you are welcome to join in there.
https://connect.mayoclinic.org/discussion/inclusion-body-myositis/
This is an older discussion about ALS, but the last comments are more current with some links about ALS Type 4..
https://connect.mayoclinic.org/discussion/als-lou-gherigs-disease/
I hope you will share what you learn from your biopsy. You can express your thoughts and feelings here because Connect is a place of belonging and support. If there are any creative projects you can work on, that may help too because it is very therapeutic! That was my coping strategy when I was scared and every new tidbit of information was another piece of the puzzle. I tried to stay focused on these details so I could understand everything, and kept doing drawings to distract myself from thinking about surgery. I was able to take it one day at a time. Don't let a diagnosis stop you from doing things you enjoy.

You might also like this discussion about ways to cope with fear. There is a video interview of me on the first page from a podcast that I used to begin the discussion and I talk about all of this.
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/
Can you think of a creative strategy that may help?

@macygollob Sending a multitude of good thoughts and prayers your way! I agree with @jenniferhunter , this is a great place to share your story and get connected with others who are also struggling. I hope you will find encouragement here. You can count me as 1 who understands the battle to hold onto hope....there is still beauty found in life, and I see this new experience as a "color change". Not everyone gets to experience this, struggles can be a gift if we use the time to learn and make others aware and spread real encouragement (not false hope)! You are NOT ALONE in this fight! Keep your head up...lastly, I agree with Jennifer when she mentioned a positive outlook really making a difference in the navigation of your path ahead plus extending and enriching life. My Mom also went thru stage 4 cancer and her oulook was incredible...she beat it after one round of chemo (no surgery) and is 7 years in remission now. Miracles still happen, just like rainbows appearing the sky. But, ya gotta be looking for them to see 🙂

@rivermaya34 Your story is wonderful! Hope is a very powerful friend when you are walking a path through the unknown. Take it one day at a time. I find that learning everything I can about my own health issues and the current research on it helps me understand where I am and believe in hope. Hope can defeat fear and believing in your ability to influence the outcome of your situation definitely helps. Ask questions and embrace it. Yes there is lots of beauty to be found and that can give you strength too! Sometimes those rainbows appear right when you need them, but you will only find them with open eyes.

Does anyone get cold feet

Take a day at a time; exercise muscle that are failing (keep motor skills alive). I went through the same waiting period two months ago and doctors still argue yes I have onset ALS and another doctor think he knows everything and is a real pain so he want authorize a full EG test to determine what muscles are effective. Good luck keep doing things you like and enjoy each day!

Yes, I surely do. Mine stay ice cold all the time, even in 95 degree summer weather.