Please Help

[cmilviper]

Thanks for your opinion, first of all.

I am 46 years old, and love my wife and young daughter.

It all started in late January/Early February of this year (2021). It all started with tightening/burning abdominal muscles that went up into my ribs/chest, even back. Since then I have had a tight banding sensation around my torso (ribs, chest, back muscles), not always painful, just tightness....with some days better than others. It sounds just like the symptoms of the "MS Hug". At one point in April, my back felt like it was all charley horses/cramped, and mainly caused pain when laying on my back....not regular back pain, along with the front rib/chest tightness. This makes it seem more difficult to breathe, but oxygen levels are always normal.

Now I am finding more recently that I have sustained bilateral ankle clonus that I can trigger myself, along with shaky arms, somewhat bilateral clonus like movements as well.

I do have what periodic twitching in different areas of the body (upper left arm, right glute, legs at times, even chest/rib muscles/back ect.)

I've had what I perceived as some weakness coming on, but nothing clinical/no failure at this point. No atrophy from what I can tell.

All ER blood work came back OK, CT scan was OK....No issues with heart ect. I had an MRI on my C & T spine.....mild to moderate bulges, but nothing that they though would be causing my issues.

I have a neurologist appt set for next week, and the recent clonus symptom has me even more concerned.

Does this sound like it could be ALS?

Thanks again.

 

[affected]

gosh doesn't sound anything like ALS
try reading carefully here

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

Please fill in the about me section on your profile before posting ( especially interest ( learn about ALS is appropriate for posters in this subforum) diagnosis date ( 00/0000) and location. This needs to be completed before posting We will try to answer reasonable questions. We are not...

www.alsforums.com

Please update us once you have seen a neurologist as that will inform you more thoroughly. In the meantime stay off the internet searching and do all you can for your overall health. That will make a difference.

 

[lgelb]

Second that, and meanwhile, I would try some gentle full body stretching, like slowly standing on your toes and lifting your arms over your head, etc. and same when you are lying down. You might also consult a therapeutic massage therapist.

Best,
Laurie

 

[cmilviper]

Thanks for your reply Affected. And most of all Tillie, you have my condolences on your previous loss.

I did read the "Read Before Posting" section, and the clonus/hyperflexia symptoms that I seem to have in all 4 limbs was the biggest concern.

I know it is rare, but does the "MS Hug" symptoms (rib intercoastal muscle spasms causing the banding/tightening sensations)......is that not how the ALS respiratory onset can happen? That was also a concern, that it all started in the torso/rib breathing muscles ect.

I will try to stay off the internet searching, no doubt.

I appreciate the service to this community that you are still providing, after your loss.

Edit......Just saw your comment lgelb, and I have tried the stretching ect, but it seems to be much more than just tight muscles, especially with the clonus coming on as well. Same to you on my condolences for the loss of your loved one, and continued service to this community.

 

[Bestfriends14]

You haven't described ALS at all, as the other three posters said. The MS hug? Sorry, I have no idea what you're talking about, and my husband has almost none of his breathing abilities left.

Again, as mentioned, it does not sound like ALS. Next week isn't too far away at all. Once you've seen your neurologist, let us know how it went. You will be cleared of ALS, so I really and truly hope that you take the doctor's words, and the words of forum members, and believe this gift of good news.

Until next week.

 

[cmilviper]

I know torso or respiratory muscle onset is not typical/rare (constant charley horses in back & rib intercoastal muscle tightness & spasms for months), along with the spasms/twitches in other areas of the body getting worse............and of course the Sustained Clonus in both ankles and even in my wrist/fingers..........The clonus aspect mainly, along with the other symptoms has me very, very concerned. I just don't see how my symptoms could point towards anything other than PLS/ALS.......

This still does not sound like it is pointing towards ALS?

Thanks again.

 

[lgelb]

No, it doesn't, and the wide distribution of your symptoms argues even more strongly against ALS. Whatever you're reading, stop.

 

[affected]

Pretty sure that's all we can do for you. Read the post I already gave you the link for, but read it slowly, and read it twice as it has a lot of detail that skim reading will miss. All the best.

 

[frankb]

the only symptom you and i have, in common, as you describe, is fasciculations (twitching), but this occurs in up to 70 percent of people, so i have read.





















twitching -

 

[Bestfriends14]

Again, you will be cleared of ALS at your neuro appointment. How about you wait to post until after your appointment. You are starting to sound like you are on the verge of being obsessed with getting an ALS diagnosis, even though you do not evidence onset of the disease. Do yourself a favour and do not go down that rabbit hole. It is a dark and lonely place.

Until after your appointment, please come back and report how it went.

 

[TippiLeigh]

I have PLS/UMND-ALS. I frequently have intercostal rib pain and most people on the PLS facebook page I‘m on have it as well. (It’s trunk spasticity for the most part, not a respiratory issue.) I also have clonus in various parts of my body. Again, it’s because of the spasticity. When someone like myself, who is upper motor neuron dominant, our symptoms and onset are very different than what you’d see in someone with a ”typical” ALS onset. Everyone is different and only your neurologist can tell you if you have motor neuron disease or not. These are just my personal experiences. I’ve now been diagnosed by three neurologists. One local general who told me at my second visit he thought it was PLS based off of all my other normal tests/imagining. I then was confirmed by a neuromuscular neurologist at UCSF and more recently by one at Stanford who thinks it’s most likely UMND-ALS, not PLS. Again, this is just my personal story to share. Hopefully this helps you to contrast and compare your own experiences.

 

[rmt]

@cmilviper, it sounds like your symptoms have all come up in the last 4 months or so. PLS and upper motor neuron dominant ALS tend to start in one area and progress slowly, so having symptoms in your torso, both legs and both arms this fast would be incredibly surprising. It would be an unbelievably rare presentation of an already very, very rare disease.

@TippiLeigh, correct me if I'm wrong, but you have had symptoms for about 2.5 years and it started in one limb and slowly over time spread to other areas. How long was it before you had symptoms in all your limbs and in your torso? That information might be helpful for cmilviper.

@cmilviper, I recommend that you go to your appointment and don't mention ALS or PLS or motor neuron disease at all. Describe your symptoms and timeline, get an exam and see what the doctor thinks it is and what the next steps might be. But don't ask if they think it is ALS or PLS. If they suspect either of those, they will tell you.

 

[TippiLeigh]

@rmt I've known there was a neurological issue going on since about March 2020. But I can pinpoint some early symptoms back to 2018. But once things were noticeable last year, I did have truck spasm and spasms in my arm and legs. Widespread twitching. Very erratic symptoms as it pertains to spasms, tightness, and fasciculations. Those were everywhere at random times. (Which is a reason I believe myself and so many that come looking for help here get blown off, because it doesn’t happen the same way for everyone, ESPECIALLY if you are UMN dominant. It’s the failure (weakness) of abilities that has had more of a progression, starting with the left foot and working it’s way up, for me. And again, this is just MY progression of symptoms. I can’t believe how many times I’ve heard from neurologists that there are no two people alike in this disease and it’s ridiculous to try and pigeonhole everyone into a classical presentation. One just doesn’t exist.

 

[ShiftKicker]

I'll weigh in with regards to Upper Motor stuff- it's true, it can't be detected via EMG, but that doesn't mean it's not apparent to a specialist. It's not even brisk reflexes- it's a pattern of abnormal responses during a clinical exam. Nor is "stiffness" the same as spasticity, though spasticity can cause stiffness.

Cmilviper, you state you have sustained clonus- was this something your doctor/neuro picked up on? If so, what were their thoughts on the matter? What are the next steps your neuro has stated must be taken? It's not even clear if your sensation of an MS hug is caused by a neurological issue or something to do with your spine- what are the next steps your neuro is taking with regards to this sensation?