First Post - Waiting for EMG/MRIs

[PR521]

I am hesitant to post here but I would very much appreciate the thoughts from this amazing community about my symptoms. I have read the “Please Read” thread, I will be donating, and I want to thank anybody in advance for taking the time out of their day to read my (long) post and respond. I trust my doctors fully and I also really respect the feedback I have seen from the members on this board in these types of threads that I have been reading over the last few weeks.

I am a 32 year old male. 6’1” Around 175 LBS (~lost 10 over the past year)

About 6-8 months ago I began noticing back pain and chest pain when working out heavily. Gradually over this time frame I have started to “feel” weaker, more fatigued, and less muscle mass despite regularly working out.

3 months ago my back lower back/hip pain was bad enough to start PT that didn’t seem to help a ton. During this time I also began to have some minor uncomfortable breathing/shortness of breath, especially when laying on my back. I chalked this up to new PPIs I was on for GERD. I have a horse voice and coughing “tick” that I have attributed to GERD over the past few years. I have ruminated food as long as I can remember but it has increased recently. No major swallowing issues.

2 months ago I continue to feel slightly weaker and fatigued all over my body. I am working out regularly but my muscles seem to be tightening and joints become much more visible/strained/painful. I get random joints in my hands or my shoulder that feels like they are on fire out of nowhere. Randomly my butt and thighs will be incredibly sore. Randomly my foot will feel “off” and I massage my nerve and it kind of goes away.

1 month ago I have intense upper abdominal/back pain and breathing issues. Undoubtedly some of it was anxiety driven based on my gradual fatigue/weakness over the past 6-7 months. I go to the ER and get a clean abdominal CT/Chest X Ray/Abdominal Ultrasound. I then get a clean endoscopy. At this time I start feeling fluttering cramps in my abdominal muscles and fluttering twitches in my lumbar muscles, particularly the left side. A few days later I start having regular twitches in both legs. I have never noticed twitching before in my life. A few days later the leg cramping intensifies heavily and I get perceived weakness in my left foot/leg. It feels heavier/weaker and starts to fasciculate very regularly all over. There is especially some spider like cramps in my left foot and what feels like pressure/buzzing at times. It gets worse when I sit or walk but seems to randomly come/go but always “feel” weaker.

Over the last 3 weeks the twitches that I constantly feel have spread all over my body. Especially around my joints. From my feet to my face/jaw. Over the last few days my left hand/arm start to feel buzzing and weakened like my left leg started to a month ago. I have no clinical weakness/failure yet and am able to workout lightly but I am so sore afterwards and do not see any gains. My gait is a bit wonky and I feel like the rest of my body is compensating for my left leg/hip/back.

All my blood work/vitamin levels are normal and my ANA tests were negative. I saw a neuro this week and with my perceived weakness I was able to pass the clinical failure tests and reflex tests. Based on my body wide twitching that I feel (and some she could see) as well as my explanation of progressive perceived weakness …she ordered a Brain MRI and EMG that I will need to wait at least 6 weeks for due to back-logs.

I know there are plenty of alternatives and ALS isn’t likely for my age but I am aware of the Frates/Gehrig type of progression and want to prepare myself with the knowledge of this board before I am able to meet with my Neuro again and do additional tests or seek additional ones.

Thanks again in advance to everyone who takes the time to respond and offer their feedback/suggestions. I know and respect that you have much better things to do with your time.

 

[lgelb]

You didn't have clinical weakness on exam, sounds like, and your history doesn't resemble ALS, for me. So I would expect a reassuring EMG from that standpoint.

Curious about use of "PPIs" (plural) and the possibility that the newest one is not agreeing with you, and/or that something GI/ENT that isn't GERD is going on. Maybe a second opinion on that? Pain can produce pain elsewhere.

Best,
Laurie

 

[PR521]

Yes I do not have clinical weakness or failure. I just can’t seem to put on any muscle, I seem to be losing mass, and I am feeling progressively weaker over the course of the last 4 months all over.. and now it feels to be minorly effecting the extremities on my left side with walking/typing over the last 4 weeks. So far it just feels a little “off” and more buzzing/pressure in those limbs and I can move everything/run/lift weights it just feels a bit “off”/weak and like some other muscles are compensating. I was very naturally strong/athletic before this began. I seem to have that kind of buzzing weird feeling all over the left side of my body, even my head/jaw/face.

It’s also disconcerting that when I’m laying in bed I seem to feel a lot more fluttering/pulsing in my muscles/joints that I usually can’t feel if I’m not pressed up against a mattress. I fully acknowledge that I am hyper aware at looking for them now, that twitches can be normal, and that some of it is probably just my pulse.. but it is weird and something I don’t remember noticing before.

I was taking famotidine very regularly when this started and then switched to omeperazole a month ago when the stomachs issue/ER visit and twitching started. Those drugs could have an impact because they block nutrients but I have been tested for b12/magnesium and everything and it all is within normal range. It’s also fair to mention that I have been incredibly stressed since my wife’s miscarriage in Feb., and that I basically had a panic attack and full blown depression when at the ER a month ago immediately before the full body twitching and left sided weakness seemed to start. I have health anxiety overall over the last 2 months but I feel like it stems from just progressively feeling more fatigued and like I can’t gain mass over 4ish months.

 

[lgelb]

Buzzing all up and down one side suggests the possibility that your pillow/mattress/sofa/car/chairs are not all supporting you as they should -- maybe something to look at.

I'm sorry to hear about the miscarriage. That is certainly a stressful event. If everything is clear from a medical standpoint, that can be the time to get counseling for the anxiety to start teasing out the chicken and egg -- if you are fatigued because you are anxious or is there another treatable reason.

Eating to gain weight if you are generally healthy is usually not a good idea and can associate eating with stress. I would suggest that you eat a good diet, address your emotions, and let the weight take care of itself.

 

[PR521]

<quoted text removed>
I very much appreciate your advice and your condolences. I certainly do not want to come on here just seeking pity from the great folks on this board but it is very nice of you.

I was fortunate to get my first ever EMG moved up to this Wednesday. It is not going to be with my Neuro (currently 10/25) but instead it is going to be with an MD Physiatrist in the Physical Medicine and Rehabilitation department. I trust that he will be able to provide a thorough exam and provide the information to my Neurologist to interpret as well.. especially since it is the same hospital network. I am curious for any thoughts some may have on this. I also have a brain MRI next week and am hopeful for a spinal if needed.

As for my symptoms they have continued to be incredibly concerning to me. I am experiencing extreme cramps spreading all over my body the past few days. Random muscles flaring up in all my extremities and my head/neck. Neuropathic/cramping pain will move from my left arm and it feels like intense pressure and weakness.. then it will move to my face/jaw that will cramp up so hard it’s difficult of me to smile on one side of my mouth and I have lock jaw. Then it will move into my right side and my calf will be so cramped that it is permanently flexed. Next my thenar muscle or a random muscle in my leg or bicep will tighten up like crazy. When the brutal cramps subsides I obviously feel much weaker and the muscle seems to be losing strength.. but it’s difficult to tell if that is from fatigue or permanent at this stage. My muscles are all so incredibly tight and it feels like all my joints are popping and all the fat has come off my body. Still no failure but I am very athletic and I think my body is compensating. I’m still twitching all over and can feel my muscles buzzing and quickly twitching deep inside or jerk twitching all over my body.. especially when laying at rest.

Does this sound like ALS or anything else anyone has ever heard of?

 

[ShiftKicker]

Hi there- we do direct people to read the Read Before Posting link at the top of this subforum. It covers much of what you are concerned about. You state many sensory issues, and even use terminology that describes issues with the peripheral nervous system- all of which points away from ALS and towards something else.

It would be best to wait for what will be a very thorough EMG/NCS exam this coming week, as it will provide you way more information than asking folk to compare symptoms and speculate on a disease specific forum. I know it is very difficult to wait, but as Laurie recommended above, there are things you can address in the meantime to provide some relief.

 

[PR521]

Thank you very much for your feedback. I certainly will take both your and Laurie’s feedback to heart and I recognize how asking the amazing people on here to play doctor with their precious time for our own benefit can be selfish and insensitive. It is very scary and difficult for me to tell the difference between what are different types of cramps (fluttering/spiders/spasm/locking up) vs peripheral/sensory and put that into words while my body is locking/tightening up and twitching.

Again, I am very thankful for your feedback and to have tests pending this week. I will return with results for anyone interested.

 

[PR521]

Unfortunately my EMG was pushed to tomorrow. Brain MRI tonight. Will discuss it all with the neuro tomorrow. I am trying to educate myself but I am probably just psyching myself out.

Can someone help me to understand how an initial EMG can be inaccurate in a situation like the below?

View: https://youtu.be/7x1K73K9H4Y?feature=shared
I trust the docs but I ask because his initial symptoms seem similar to mine.. but I am also having crazy bulbar cramping and shortness of breath. In this case I should ask her to at least EMG my Trapezius as well, correct?

Thanks so much in advance. I will come back with my results by Monday.

 

[Nikki J]

Short answer he had right leg onset and left leg emg for some reason.

You should tell your doctor your symptoms and concerns. She will decide what needs an emg based on that and her exam. Let us know when you results and your doctor’s assessment based on them

 

[PR521]

I was able to get my high level test results back. Do not have full report yet. Will post when I get it.

Brain MRI: Clean

EMG:
Considering a lot of this started with breathing and swallowing/throat acid issues (with a clean endoscopy) I was hoping they would do some front diaphragm and tongue or chin. Hopefully the middle trapezius is indicative enough. They also only did the left side of my body but that it where I’m most fatigued.

“Nerve conduction studies normal except for borderline slow conduction velocity of the left ulnar motor study at the elbow of 43 m/s. Although prolonged latency reported for superficial peroneal and sural sensory studies, per my review 4.2 ms is still well within normal ranges.

EMG testing of several muscles of the left lower/upper extremity, left gluteus medius, and cervical and lumbosacral paraspinal muscles normal.”

 

[Nikki J]

Diaphragm is never done these days. When diaphragmatic pacers were being tried for ALS ( failed trials) and it was part of preop testing the Mass General emg lab actually had a “ cheat sheet” in the emg room for the doctors ( all board certified fellowship trained experienced who did emgs all day long). It just isn’t considered helpful. Pulmonary function tests are done for breathing concerns. Trapezius is good for bulbar. But anyway you were tested in symptomatic areas. It is utterly normal to do one side and you said they even did your worse side and cervical and lumbosacral paraspinals So you were thoroughly tested

 

[PR521]

Thanks for the information Nikki.
Needless to say I am very happy that everything came out so clean. I would be lying if I said I wasn’t still a bit concerned about bulbar or respiratory based on my neck/jaw soreness, constant throat clearing /horse voice/water brash, and shortness of breath…. but it is what it is.

I was diagnosed with benign fasciculation and cramping syndrome for the time being. Taking gabeprentin, magnesium, B12 (even though my levels were normal) and drinking a lot of tonic water (not helping my constant burping/water brash lol). The twitching is odd but it really isn’t what is freaking me out at all. Out of nowhere I just have a complete physical activity intolerance as an athletic 32 year old. Any activity I do makes any muscle I use ache/painfully cramp like crazy, then twitch. Not even exercise… just typing or walking or chewing /swallowing. The shortness of breath and trouble getting air to speak has me worried as well but thankfully my Neuro referred me to Pulmonary for a follow up. We discussed ENT too and I may go that route but I just feel nuts scheduling SO many appointments.

 

[Clearwater AL]

EMG testing of several muscles was normal. With what Nikki wrote above you'd be
pretty much excused from this ALS forum.

A normal EMG is great news. Until your Pulmonary and ENT... do yourself a favor
and don't linger here reading old or new threads and Dr. Google. Let the real
doctors get you onto a path of good health and completely thought free of ALS.

Being just 32 years also gives you huge odds against having ALS... as written
for others so many times before. I hope your issues are resolved soon.

Until then...

 

[PR521]

I am back again after my ENT. Unfortunately I appear to have vocal cord hemiparesis on the right side. I still also have full body symmetric weakness/fatigue, painful cramps and twitching all over after any activity.. no failure or sluring at all though. I am really worried for the worst at this point but trying to hold out hope. Meeting with my Neuro next week to discuss further. They did limbs/paraspinals EMG on the left side.. and even my middle trap.. but maybe now they will do some more bulbar specific tests? ENT ordered Scans and a swallow study.

Today he was found to have a right vocal nodule in the striking zone as well as a left vocal cord hemiparesis. I recommended CT scan of the neck and chest to evaluate the course of the recurrent laryngeal nerve as well as a barium swallow given his episodes of rumination that could represent a diverticulum or achalasia. The vagus nerve would be a common link to the recurrent nerve and left vocal cord weakness as well as esophageal dysfunction. I will call him with the results of the studies..

1. Paresis of left vocal cord

• CT, neck, w/ contrast

• CT, chest, w/ contrast

2. Dysphagia

• learning about swallowing problems

• XR, esophagram

 

[lgelb]

It sounds like you may have an injury or lesion around the vagus nerve, which would have nothing to do with ALS. So I continue to think you're in the wrong place, fortunately. Let us know how the neuro appointment goes.