MarkP
New member
- Joined
- Jun 1, 2015
- Messages
- 4
- Reason
- Learn about ALS
- Country
- US
- State
- OH
- City
- Perrysburg
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
Trunk Area
Lower Body
Face/Mouth/Throat
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.
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.