Could this be ALS?

[Dfa1170]

Hello and thank you for a community dedicated to helping those in limbo, and the support system for those dealing with this.

Looking for direction and in the process of waiting for my appointment with my neurologist. Have been seeing him for a long time and he has been so wonderful. Long story short for people to share and read:

He is looking at ruling out other things besides ALS and he believes I would be on the potential ALS side of things, but wanting to rule out other things. These symptoms have persisted and gotten worse over the past 6 months

1. I had an abnormal EMG of just my arms to rule out a pinched nerve. Left deltoid showed three areas of dense waves/fibrilations, and small, short polyphasic MUP's, right side showed one small area, but no MUP's.
2. Had 2 MRI's of areas that would be affected by that area and cervical spine, and they came back negative.
3. Had multiple blood tests to rule out a number of things. Most noteworthy, 1. Lactate Dehydrogenase - High (in the muscle/liver) 2. Aldolase - Normal range, 3. CK totals - Normal High range (at top of range), 4. Paraneoplastic Antibodies - Negative
4. Body - Leg muscles have constant fasciculations, noted in front of Dr, arms occasionally. Moderate muscle weakness in both legs, mostly on left side, with more concentrated stumbling. Left side arm is very weak compared to right side. Both hands having trouble opening things (jars, ziplock bags, hold something of weight, walking dogs, etc). Stairs are not my friend anymore, fatigued going up and down (feels like I am carrying 50 extra pounds). Have severe obstructive sleep apnea, and have had bouts of bells palsy.

This is a small list of things overall, but they have ruled out MS, Cancer causing these things, and most other things close to these issues. Have an amazing group of Dr's. I do have chronic Lyme, which I know is a mimic for ALS, but that has been mostly in the form of neuropathy in hands and feet. Never had Covid, and I am vaccinated.

Thoughts and questions I should be asking of my neurologist or any other tests to run while I visit him in 2 weeks? Thanks again for any information or time spent in answering and your help,

Dan 51 years old

 

[Nikki J]

How long ago was the emg? Aside from ordering the tests you have had what did the doctor say and what was his plan?

do you have clinical weakness? ( doctor confirmed) did they find upper motor neuron signs?

ask what is still in your differential and what tests you need when. If this is not a neuromuscular/ ALS specialist ask if you should get their opinion. If your emg was recent the answer may be you need to wait and repeat in 3-6 months

 

[wishmobbing]

It sounds like you are in good hands with you doctors and are approaching this with caution but without panic. Not much to do but be patient (maybe get your mind off it by doing stuff), trust the process and then go for a specialist's second opinion if it should boil down to ALS.

Please try to avoid falls especially with stairs and don't be shy to use a walking aid of some sort if you feel unsafe walking.

All the best and let us know the results of your next appointments, if you feel like it.

 

[Dfa1170]

Thanks Nikki,
EMG was 1 month ago.
I do have Dr confirmed clinical weakness, he ordered tests before we did anything in full relation to checking upper motor neuron, but believe this upcoming appointment will be more diagnostic in that way.

What is left in your differential?

He is a primary neuro,my clinic has a dedicated neuromuscular/ALS department, which would be the next steps he mentioned if testing can back the way it has so far.
So I think, getting another EMG in 3-6 months, transferring to the ALS clinic are on the horizon, but that is my guess based on what he wanted to check and how the results have come back so far.

Thanks so much for your info, helps in asking the right questions and getting to the root cause whether ALS or not.
Dan

 

[Nikki J]

Checking upper motor neuron signs would be part of the regular neurological exam as they are reflexes and muscle tone primarily. if he did not comment on abnormalities that is a good sign. You might ask about MMN which is a LMN ALS mimic. Not everyone has a conduction delay with MMN. Similarly not everyone has signs on blood work but that is something often/ usually done if you present with LMN findings and not much on upper so I would ask for that test.
otherwise it sounds like the plan is sound. Keep us posted

 

[Dfa1170]

Thanks Wishmobbing,

Will keep you updated for sure. Thanks for the encouragement. Just found out the Doctor who did my EMG is the part of the ALS department at the U of M. Appreciate y'all on here.

 

[lgelb]

In addition to the good advice above, would make sure your sleep apnea is being adequately treated (CPAP isn't set and forget, esp. if your weight has changed, and there is a pathway for BiPAP if CPAP is not the answer), and look at whatever meds have been used for the Bell's as all can have their own side effects.

Best,
Laurie