Three Months In - Looking For Answers

[MarkP]

Hello everyone. And a sincere thank you to the PALS who take the time to read and respond to these posts. I've been a reader here for a while, but finally worked up the courage to post. Let me apologize in advance for the length of this post.

My symptoms have been going for about three months now and they're slowly getting worse. I spend Easter weekend in the hospital, mostly due to an anxiety attack from not knowing what was causing all of this. I've had tons of bloodwork done, MRIs of my brain, cervical spine, thoracic spine, and lumbar spine, and a lumbar puncture. They all came back normal. I've had examinations by two neurologists (one local, one at Cleveland Clinic) and a rheumatologist. My local neurologist did an EMG on my right leg only and said it was "normal," although I never got to see the results. I had an EEG performed at Cleveland Clinic, which also came back normal. Now my neurologist at Cleveland Clinic wants to redo the EMG to at least include my legs, arms, and back on June 22nd. He never mentioned ALS as a possible diagnosis. All he said was that it "could be a lot of things." In the meantime, I just can't stop worrying about it. For reference, I am a 39-year-old male who was otherwise healthy prior to the beginning of these symptoms. Here's what's going on right now:

Upper Body

• Pain/soreness in right upper back (shoulder blade area) and shoulder. Looking back over the past few months, I got this pain in the same location whenever I was lying on my stomach in bed and working on my laptop. I always assumed that it was from lying in a strange position. But that pain used to come and go before whereas it’s constant now.
• Weird sensation from shoulder to hand. Almost feels like numbness. Not as though I can’t feel touch, but more like my muscles themselves are “dead” inside my arm. There’s no “pins and needles” feeling or any weird sensation, really. My arm just feels heavy.
  All muscles from right shoulder to hand cramp very easily. Holding a cell phone to my ear for just a few minutes causes my bicep and hand to cramp.
• Entire right arm gets tired very easily. Last night, I held up a half gallon of almond milk to read the carton. My right arm was exhausted and sore after only a couple of minutes. I tested it against my left arm by holding up the same carton. I held it in the same position for over five minutes without any discomfort.
• Twitching comes and goes in my upper body, but is mostly concentrated on my right shoulder and shoulder blade area.
• Intense cramping in my right arm. It can be my shoulder, bicep, or forearm. It comes on suddenly, usually from only moderate usage of the muscle, then is excruciating for a few minutes, sometimes longer.

Trunk Area

• Pain in middle upper back/neck area. I always feel like I have to swivel my neck around to crack my back, but it generally doesn’t help at all.
• Very sore lower back. Feels like “normal” lower back pain, but bending over or sitting up from lying down causes my body to shake and my lower back to hurt even more. My back just feels very weak. Like my other muscles have to compensate for it.
• Occasional twitches in stomach and ribcage area.
• A feeling of “tightness” in my lower back that feels like it limits the range of motion of my legs. I apologize for the silly imagery, but imagine clenching your butchers together and walking around. That feeling you'd get in your lower back is what I have all the time lately.

Lower Body

• Tightness in right calf. There’s no persistent pain, but it hurts when I walk on it or put weight on it.
• Very frequent fasciculation in right calf all over the muscle; front, sides, and back. The twitches seem to be much worse when I’m lying on my stomach with my legs stretched out or when I’m sitting with my right leg crossed over my left.
• Fasciculation in my feet (all over) and ankles.
• Frequently feel off balance, leaning or falling to my right or backward right. I’ve not fallen down from this, but I’ve had to catch myself a few times with my hands.

Face/Mouth/Throat

• Occasional spasm in my larynx where I feel like I can't breathe or I'm choking. These usually only last a few seconds and they're always while I'm lying down, but they scare the Hell out of me. I've had severe indigestion lately (probably stress), so this could be a possible cause of this.
• Swallowing saliva is a "hard swallow." It feels like I have to put a lot more effort into swallowing my own saliva than beverages.
• Occasional difficulty swallowing liquids. I've regurgitated water twice recently.
• A feeling that crunchy foods (like granola and potato chips) leave residue in my throat. I always feel like I have to clear my throat afterward.
• A weak, numb feeling from the left side of my lip up to my left cheek. When I look at it in a mirror, it looks the same and I still have control of these muscles. But they tend to quiver when I smile and get tired very easily when I'm speaking.
• Left side of tongue sometimes feels tingly. I've had this feeling from local anesthetic after dental procedures before, but never on only one side of my tongue.
• I've bitten my left cheek, tongue, and inner lips a lot lately.

I know that a lot of this might sound atypical for an ALS onset, but based on how it has all progressed, my biggest concern is axial onset. There just isn't a ton of information out there about it. All I know is that it can start with pain and weakness in your trunk area (check), widespread fasciculations (check), muscle cramping (check), pain in the lower and upper back (check), and spread to the facial muscles, tongue, or throat (seemingly check).

My question is... is there anyone out there dealing with axial onset firsthand? Or anyone who is knowledgeable as to how it truly progresses? There are so many places to find information on limb and bulbar onset, but there's hardly any information on axial onset. I understand that's because such a low percentage of people get it, but that's of little comfort right now. Thanks so much for any responses. I truly appreciate your time if you've read this far.

 

[GregK]

Ok, as a long time lurker you should have seen many admonishments to read the sticky.
Your repeated reference to pain and other sensations shows that you have not.

Please read the sticky note at the top of this forum titled "New Members: PLEASE READ BEFORE POSTING!"

Most of your questions will be answered there. If they're not answered, then ask here.

:^)

The scheduled full EMG should answer your concern.

 

[Nikki J]

Well you did say you knew it sounded atypical and you asked a specific question which i can't answer with any personal experience. You should be asking your doctor to be more specific. What is in the differential? What is not? If ALS is out why? If it is in what makes you consider it and are there things that argue against it? Sometimes you have to dig for specifics. Part of that is I think the legacy of paternalistic medicine which annoys me intensely. Patients and doctors get along much better if they understand each other's thought processes

 

[MarkP]

Ok, as a long time lurker you should have seen many admonishments to read the sticky.
Your repeated reference to pain and other sensations shows that you have not.

Please read the sticky note at the top of this forum titled "New Members: PLEASE READ BEFORE POSTING!"

Most of your questions will be answered there. If they're not answered, then ask here.

:^)

The scheduled full EMG should answer your concern.

I have indeed read the sticky. Sorry to burst your bubble, but back and shoulder pain are often initial symptoms of axial ALS. If you're not aware of that, I would invite you to go do a little more research rather than worshipping the "facts" preached in your little echo chamber sticky. There are PALS who have complained of localized pain and fasciculations prior to the onset of weakness. Early in my quest for answers, I discovered Kevin O'Donnell's YouTube channel. Some of his early symptoms were shoulder pain and weakness. Kevin passed away two years ago. I've also read many stories of PALS who did indeed experience tingling and other strange sensations prior to weakness. I read a story on these very forums where a user said her mother's first symptoms of bulbar onset were "strange feelings" in her tongue and throat.

I'm not looking for a diagnosis here. Nor am I looking for reassurance that I don't have ALS. rude

 

[Atsugi]

MARK: I read your post closely and didn't see the magic words that might mean ALS; you have no paralyzed muscles. The sticky post that Greg highlighted explains away your weird feelings and twitches.

You did, however, very accurately and thoroughly describe one helluva case of health anxiety.

Have the EMG if you must, but see the shrink, too.

 

[MarkP]

MARK: I read your post closely and didn't see the magic words that might mean ALS; you have no paralyzed muscles. The sticky post that Greg highlighted explains away your weird feelings and twitches.

You did, however, very accurately and thoroughly describe one helluva case of health anxiety.

Have the EMG if you must, but see the shrink, too.

Believe me... I hope it is health anxiety. I've been seeing a counselor for a little over a month now and asked to be on something (Celexa) for anxiety and depression. I realized early on that a lot of this could be attributed to anxiety. As such, I decided to be proactive and start dealing with the anxiety component on my own. The strange thing is that I'm doing much better psychologically than I was a month ago. But my physical symptoms continue to get worse. If I'm dealing with HA or a conversion disorder, I'm sure it would take longer than a month to get "better." I just can't figure out why things seem to slowly be getting worse. But, that can become a self-fulfilling prophecy too. Either way, I'm very aware that there may be no medical cause for any of this. But that doesn't mean there isn't either.

 

[gooseberry]

First I would say to make sure you aren't dehydrated and you are getting plenty of electrolytes. Magnesium, coQ10, and tonic water were recommended by my husbands gp for.cramps.

I am more concerned than others about your symptoms but I am less experienced in dealing with the disease. My husband has respiratory onset but first presented with neck pain....but it was due to muscle atrophy, breathing difficulties....from a paralyzed diaphragm, etc.

What everyone is trying to tell you is to be patient, and wait for the emg results. If you are planning on making changes , like making a will, perhaps you could work on those items while you wait.

 

[GregK]

So sorry lad. I must have missed your mention of reading the sticky.

I did search. Not much out there on axial onset. The sole description I found noted that it was associated with neck pain, which seems to fit you:

Patients with axial symptoms of ALS present with neck weakness and may complain of posterior neck pain or strain

I also searched _this_ forum and found the same paucity; I doubt you'll find much here.

However, as others have noted, you don't appear to have other als symptoms so fortunately your quest will lead elsewhere.

 

[MarkP]

So sorry lad. I must have missed your mention of reading the sticky.

I did search. Not much out there on axial onset. The sole description I found noted that it was associated with neck pain, which seems to fit you:

I also searched _this_ forum and found the same paucity; I doubt you'll find much here.

However, as others have noted, you don't appear to have other als symptoms so fortunately your quest will lead elsewhere.

I sure hope you're right. :neutral:

Thank you for your response.