Worried Sick

[franklind]

I have thoroughly read many ALS forums, and a lot of "information" seems contradictory, specific to the onset of symptoms, sensory symptoms, validity of an EMG, etc.

I would appreciate feedback regarding my symptoms and current state, but do want to highlight initial symptoms will seem unrelated to ALS but current symptoms are terrifyingly similar. Please hear me out and understand I am struggling with the thought of potentially having ALS at the young age of 27. I mean no disrespect to those diagnosed with ALS coming to this board with my "problems".

I started experiencing dull chest pain, difficulty swallowing, tightening of my throat muscles, throat pain, and a sharp pain from the bottom of my head radiating into my shoulder blade around November 2017. I currently still experience constant difficulty swallowing, but other symptoms above seem to come and go. As a result of these symptoms and generally feeling unwell, I more or less ceased exercising whereas previously I would workout 3-4 times a week. I have probably completed no more than 5-6 light workouts since November 2017.

Come late February/early March 2018, I started to experience a tingling feeling almost constantly around my jaw and cheeks. Now you're going to think i'm crazy, but 3 weeks after this started and did not subside my dentist convinced me the tingling, along with my difficulty swallowing, could be caused by my wisdom teeth. So I ripped them out. This did not fix my swallowing difficulty; although, the face tingling is less constant but still comes and goes. Strangely, maybe i'm crazy, but the face tingling sensation seems more frequent when I have facial hair.

Symptoms up to now were worrisome, but the beginning of April 2018 is when things started to progress and is when my ALS fear started. I started to get muscle twitches, mainly in both calves, but for the last ~ 2+ months I have noticed them in my left bicep, between my thumb and index on my left hand, as well as the calves almost constantly. I have what I hope is perceived weakness in my left leg and left arm, and notice I drop my keys frequently and awkwardly grab and pick-up things with my left hand. When I wake up in the morning my legs and arms feel heavy and it is difficult to get out of bed. Specifically, my left arm and leg which is worrisome to me. I have daily aches and pains in my left arm/shoulder/bicep as well as my left calve. It appears to me that my left bicep and calve are smaller than the on my right side (potential atrophy). The twitching has not stopped. I also have back pain, although bearable. My left leg and arm seem to shake/tremble when lifting for an extended period of time. My right side feels somewhat normal. Night time the pain is at its worst, and my left shoulder and left calve (including elbow and knee) ache and it is difficult to sleep. What is also worrisome is that I have noticed for the last 2-3 months I have been slurring my words and even hesitate to speak, as if my facial muscles don't have the strength. I am 27, and even notice my voice cracking. I also have on and off buzzing sensations in my feet but these sensations are more recent. For 4+ months my bowel movements have not been normal, without providing too much description :-|. The right side of my face feels heavy, and i notice my right eye slightly droops and takes a bit longer to open in the morning when I wake up.

I have had almost every test under the sun, with exception to a spinal MRI. I have seen my neurologist twice, and he performed an EMG in the beginning of the onset of my muscle twitches but only two spots on each calve and did not provide me or even print a report. He just told me i'm fine with no further description. What recently made me nervous was my orthopedic doctor telling me my left arm reflexes were abnormal, but in following up with my neurologist about this he did not seem concerned, but also didn't unequivocally tell me my reflex was normal. He did straight up tell me I do not have ALS, but is not a neuromuscular specialist and I feel he is not taking me seriously due to my age. I have also been tested for Lyme via Quest Diagnostics, which came back negative.

I feel like I have so much more to tell, but this has been too much already. I am really stressing, and this is consuming my life to the point where I feel like I am going to get fired from my job. I am fearing the worst, and appreciate your feedback. Again, I mean no disrespect to those currently diagnosed with ALS.

 

[GregK]

Go back thru your post and delete all your 'feeling' symptoms (ache, tingling, etc.). ALS effects Motor neurons not sensory ones.

Delete your symptoms that 'come and go'. ALS symptoms don't 'go away', at least not at this stage.

Delete your twitching, everyone twitches, even 'normal' people, so it's diagnostic of absolutely nothing.

Not much left, is there?

 

[lgelb]

Hi Frank,

I don't doubt you're experiencing some scary things, and being on the verge of being fired is not good.

What I don't see is a reference to primary care. If you have anything, my bet is that it is systemic, not neurological or orthopedic, like a virus or chemical imbalance. Thus, a PCP is the best person to help you. Forget about "potential atrophy." You have atrophy or you don't. The neuro and orthopod both would have noted it.

Abnormal reflexes are very common and no one would diagnose anything just based on your L arm. But you have the right to ask for the EMG results, as with all your records, and are welcome to post them here. You also have the right to ask the neuro to explain in what respect your reflexes are abnormal and why it doesn't matter.

We obviously can't answer these questions from afar. Get the answers you need from people on the ground, to move on with your life. We all deserve the best life we can lead, and clearly, this isn't yours.

Caveat: I take it myasthenia gravis was ruled out? The neuro would normally be the one to cross this one off.

Meanwhile, I would work out (do as much as feels comfortable after your layoff and work your way back up, perhaps with a trainer session to start), get a massage, take a nature walk, do things that you used to do and/or that could help you feel better.

We won't see ALS in this picture -- which is great news. Try to understand why you are so worried, get the questions answered, and live the life that those here would give a great deal to have.

Best,
Laurie

 

[franklind]

Laurie and Greg, your responses are much appreciated.

Laurie - I have seen my Primary Care doctor a few times, to-date nothing in my blood work has came back wildly "out of range" but I find myself paying close attention to a few tests that are close to being out of range, simply because I know something is going on (in addition to severe health anxiety) as I remember what being "healthy" felt like. To answer your question/for example, my ACETYLCHOLINE RECEPTOR MODULATING ANTIBODY (myasthenia gravis) showed 26% inhibition while out of range is only 32% inhibition. I don't know how to interpret this or know if it should now be closely monitored, but what bothers me is I don't feel like my Primary Care Doctor is paying close attention for any patterns in my blood work in which I believe could be beneficial given my situation.

I could be wrong, but it seemed like my numerologists EMG was "old school" and it didn't appear to produce any report as he was simply looking at and analyzing a computer screen. Unless it is somehow automatically archived in the system.

Since I have been exhausting all options, I have been seeing a great chiropractor who believes it could be my spine causing my issues based off of X-rays (17 degrees loss of 60% in cervical spine, slight scoliosis, and a few other subluxations). Although, I have been doing physical therapy for more than a month to fix these "issues" but only feel like I am getting worse. My insurance denied a spinal MRI, which I am currently appealing.

I know the above information doesn't apply to ALS, but yourself and many people on this forum are very caring and I greatly appreciate your thoughts and comments.

If it weren't for the internet, I likely wouldn't be so worried but only have myself to blame for not having self-control and willpower to dismiss ALS as a potential diagnosis. My heart goes out to all of those diagnosed with ALS and those who have lost a love one to ALS. I can only imagine; and simply imagining even puts life in perspective.