Limb Onset ALS Symptoms

[Eric M]

First off, I am super impressed with the compassion and empathy shown by so many members of this forum. It is so nice to see during a time when we seem so divided. Kind folks take time out of their lives to help others. Thank you all.

Second, I have read the pre-posts which were super helpful. However, I've read many other case studies that leave a few of the symptoms I've experienced in a gray area. I appreciate your collective understanding.

• 51 year old male. 177 LBS 5'8". Generally fit, with a few LBS to loose.
• Intermittent lower back pain that preceded muscle weakness in legs.
• 3 weeks ago developed weakness in both calf muscles. Came on suddenly w/ mild discomfort (tiny twitchy feeling all over calves).
• Right leg impacted more than the left. Felt odd to walk, like the calves were struggling to perform. No tripping or weakness in the feet.
• Calf weakness has spread & now I have weakness / slight pain in thigh, hip area with slight muscle pain in the buttocks.
• Started in the right leg, but the pain in hip is slowly spreading to the left leg.
• Weakness most often felt when climbing stairs, with a bit of fatigue when I reach the top.
• Calves also have mild intermittent cramping. Calf cramping (not super hard) but feels slightly tense. Lasts 15 mins / 2 hrs, usually when I'm at rest.
• Other symptoms: occasional "heavy" feeling in my mid spine (core). Carpel tunnel feeling in right arm + feeling of weakness in rotator cuff area of both arms (comes and goes).
• Neurologist performed a strength test last week which I passed without issue. He also conducted an EEG which was normal. EMG scheduled for next week and the second session the week after. MRI also in 2 weeks - lumbar, mid / upper spine and brain. Comprehensive bloodwork, so far it's normal. Waiting on a few more results.

Per the Read This First post:

There is nothing I can't "do" - for example walking on my heels, heel raises (isolating the calf muscle), walking in a straight line, squats, etc. But there is just a general leg weakness and heaviness that varies in severity typically based on how much I did the day prior. I've seen other sites that suggest general weakness, even if it doesn't preclude you from doing something, could be a sign. This weakness is definitely present and obvious.

I know ALS doesn't typically produce sensory (pain) but thought if the pain was cramp-related, it could be relevant?

Like so many others, I have extremely high anxiety over this. It's all I think about Hoping for a few comments to advise if this seems likely heading toward ALS. Please ask any clarifying questions if I missed some important details.

Thank you again for reading.

 

[Nikki J]

You say the neurologist found no clinical weakness. Did they find any abnormality on clinical exam? What did they say they thought was wrong? The first thing I thought was a spine issue which seems consistent with your symptoms and is common

the tests you have scheduled should give you an answer. Do let us know

 

[Eric M]

Hi Nikki,

Please forgive the ignorance with terminology as this is my first experience with this sort of thing.

I was examined by a neurologist which included a review of my medical history (including family), followed by a description of the symptoms and a set of physical tests administered by the doctor. This included testing reflexes, strength symmetry between right / left limbs, walking tests, sensations, etc. If this is what you referred to as a clinical exam, it was conducted and there were no abnormalities.

Since there were no abnormalities from the above exam, the doctor didn't have any specific conclusions to offer. He did hand me a brochure on MS, but aside from that no other clue was provided.

I did ask if he felt this could be ALS, as that is clearly a concern. He said he didn't see anything yet that would point to that, but stated we'd have to wait for the EMG and MRI before there would be any additional direction.

In the Read Before Posting thread, there were a few things that stood out as reassuring for me. I'm curious if this continues to represent the prevailing thought of the group: Clinical Weakness—ALS is about failing, not feeling. Which makes the point that it's failure that is more the hallmark of ALS. I'm curious how absolute this is, as it seems there have been other case studies that suggest initial general feeling of limb weakness ends up being an early indicator. In my case, I don't have any issues walking. buttoning shirts, inability to perform any physical actions. Can you advise if the common thought based on the above post suggests that my symptoms are unlikely to be associated with ALS?

Of course this is just my way of reducing anxiety, so I understand if you have limited feedback. But it seemed that the author put some very good thought and effort writing the article referenced above so I was curious if this is still applicable.

Thank you again. Regardless of my diagnosis, after learning more about what this does to folks, I'll be a supporter of this forum well into the future.

Eric

 

[lgelb]

Your references to "other sites" and "case studies" that support general weakness feelings as an ALS precursor will belie experiences here and the medical literature do not.

Most often PALS with good intentions misremember/mistate their history, for many reasons, including the frequency of misremembering.

Failure rather than feelings remains the typical experience of our group.

I agree with Nikki that a spine problem, esp. with weight to lose, would be the most common explanation. Many of these are amenable to PT.

Overtraining or doing exercises or work that you're not unaccustomed to would be another common possibility, if it applies to you.

I don't see any reason to worry about ALS.

Best,
Laurie

 

[Eric M]

Thank you Laurie. I appreciate you taking the time to respond. I also want to say that I'm sorry that you lost a loved one to ALS.

I also see you are living in the Seattle area. While we now live in Ventura, my wife and I lived in Seattle for 3-1/2 years and made many lifelong friendships during our time there. While work took us away from the PNW, it's our hope to return someday.

All the best to you and yours. Once again, my sincere gratitude to you for responding.

Eric

 

[affected]

If we no long45 continued to represent that statement in the post, you can be sure we would alter the post very quickly.
That is our official position and initial feelings of general weakness truly point away from ALS.

I hope you can work with your doctors to find the answers to what is happening, but truly, let them do the hard work, it is what they are trained to do.

Lastly, waiting on an EMG does not mean they think well maybe you do have ALS. The EMG is used as one of the many tools to diagnose hundreds of conditions. Doctors are very careful not so say things like, 100% not. The doctor said that nothing points to ALS. That means you have no reason to suspect ALS. In fact, if you had not asked about ALS the doctor was not likely to have ever considered discussing it with you.

All the best.

 

[Eric M]

Affected - your comments make perfect sense. I should have known given the quality of content on this forum that members stand by their collective posts. I should not have doubted, but thank you for confirming.

You are also 100% correct that my neurologist would not likely have even raised this as a possibility. As with many others, my own anxiety mixed with ill-advised web searches, have projected these fears.

I am very sorry for the loss of your loved one to ALS.

Please take care, and thank you again.