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JayMelen

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I am suffering in silence and need advice please. I've tried to avoid posting here for months and thank you for reading my experience and for any guidance you can provide me. I don't want to cause panic within my family so I've been dealing with this on my own. I only discuss my symptoms with my Doctors, but it's wearing me out with worry. Here is what's happening: My left calf muscle appears to be disappearing and what's left of it twitches incessantly on some days and nights.

In March of 2020 I started noticing twitches all over my body (biceps, ankles, abdomen, temple, chest thighs) but more often than not, my left calf area. Then a month later I started feeling discomfort (dull pain) behind my left knee and it became somewhat uncomfortable to walk some days. About one month later in April 2020, I was in the shower and noticed a clear difference in the size of my legs, my left leg and calf being noticeably smaller that the right. When I flex the muscle there is a very noticeable difference and I do not know how long my calf been this way. The muscle now hurts almost all the time especially after the nights of non-stop twitching.

When the calf twitches, it's like an attack that can go on for hours, it keeps me up and tortures me during the day. On a few occasions I've had a similar "twitching attack" on my right calf or other parts of my body, but the left calf never subsides for more than a day or two since April. It feels like the twitches are eating the calf muscle up. Recently, my hands also started to hurt, especially my thumbs and index finger joints. My hands don't look right to me, they look too thin, look like they belong to a much older person; I am 46. My left shoulder hurts and for the last three days, the muscles between my shoulder blades hurt a lot at night and in the mornings.

Although I have the left leg discomfort, I have not fallen and I am not experiencing any clumsiness, no foot drop. I don't drop things but sometimes it hurts to hold things with my hands. Although it unconformable, I can still walk and do calf raises on each leg although the left calf tires faster or I have to stop before it cramps on me. It seems the outer part of the calf is all that is left and the inner part is very diminished. No symptom is strong enough that anyone except me can notice except for the occasional "you look tired" which I often am. If I twitch, I hide it so no one notices. I pray this isn't ALS.

Background: My health's decline began in late 2017 with an ecoli infection that I could not fight off without antibiotics. Gastro gave me 1 week of Cipro and Flagyl and all seemed better, but 3 weeks later the infection was back. Next, they gave me 2 weeks of Cipro and Flagyl. I cleared the bacteria after the second round but was left with strong and confirmed IBS. I battled the IBS for 2 years along with headaches, hand and leg tingling, strong bouts of frequent urination, ear ringing, stomach pain, rib pain, night sweats, oily urine, dry mouth... you name it. I thought I had a serious bowel disease. I underwent abdominal CT scans and a colonoscopy with no remarkable findings.

Then in 2019 I started noticing headaches when I ate, and at times vertigo as well. Dec of 2019 was the worst of it with a massive "flare up": ~20x urination in 24hrs, intense leg tingles, blurry vision, I could only sleep about an hour and it was all following the consumption of a smoothie and a sandwich (that is the only thing I can associate it with.) Based on this I suspected that I could be a diabetic or had undetected pancreatic issues (due to the gut pain.) I am a person who never calls in sick, but I had to tell my lead for the first time that I suspected diabetes and that I had something serious going on. My PCP and I agreed I should see and endocrinologist and a neurologist. The endocrinologist gave me a glucose meter and concluded no diabetic processes was present based on blood sugar measurements. A1C also did not support diabetes.

My primary care provider tested me for auto immune diseases uch aa Lupus, celiac, STDs, you name it... all negative. We tested for Lyme and one band came back positive indicating some type of past infection but doctor said that two bands needed to be positive for it to be Lyme diagnosis.

After many doctor visits and many tests, and a month before the twitches started, I visited a neurologist in Feb 2020 (at Cedar Sinai) for the constant hand tingling at night, leg tingles at all times, urination and right forearm numbness and pain. Up to this point an ALS possibility was not on my radar, again the twitches had not started yet. I honestly did not fully understand ALS at that point. There is no family history of it in my tree. At this first visit, the neurologist did not mention any possibility of ALS. Coincidentally almost all IBS cleared up in early 2020. I was so happy that my gut was better and then the twitches began.

At this first neurologist visit Dr ordered three tests: brain MRI, blood test for autoimmune neuropathy and an EMG. He examined me and said all seemed normal except some possible mild neuropathy. Neither he or I noticed the leg atrophy at this time, calf was not bothering me then so my calf muscles were not closely examined. In March 2020 I spoke to the neurologist again over the phone and he said that the MRI of my brain was clear, he concluded there was no MS based on the MRI. I asked if we should MRI my spine to be sure and he said not needed, the brain MRI was enough. I could not find a lab to complete the blood test for autoimmune neuropathy, so he said never mind on that lab work. I mentioned the twitches that started a month after I first visited him and he told me to take magnesium and that they were most likely benign fasciculations.

He asked about the EMG and I told him I had not completed it as I feared an ALS diagnosis and did not see the point in diagnosing a disease I could do nothing about in terms of a solution. Plus, I had read about false positive and false negative EMGs. He said it was very unlikely based on the odds that it was ALS but that we should rule it out since I had concerns. I went back in person to see Neuro in July and explained the twitching continued despite magnesium and showed the leg difference I was now experiencing. He also noticed the atrophy and switched the order for the EMG from the right leg and arm to the left leg and arm. He said he'd be surprised if it was ALS and offered no other paths aside from seeing an orthopedic doctor. He measured my calves using his hands and said it was 80% of the right. Then he said, ALS is an asymmetric disease and that sent me down a chute.

Per the orthopedic doctor I visited last month, my left leg Xray was clear but he measured 3/8" less circumference left calf vs right. He used the term atrophic to describe my leg and said primary cause was neurological as he dictated notes. He ordered an MRI which I complete but I won't have the results until later this week when I see him again.

In the end, my PCP says she'd be surprised if it is ALS, my rheumatologist says it sounds more like MS than ALS (I have ankylosing spondylitis, but he says that disease is not causing my symptoms.) A visited a reputable infectious disease doctor as well and she said it is not infectious disease related and she also doesn't think it's ALS. I visited her because in my perspective this all started with the e coli, and I have traveled outside the country and mosquitos have enjoyed me for lunch a few times. I see a psychiatrist for grief counseling after losing my mother to lung cancer in 2015. He also does not think it's ALS.

I asked if he thinks I am a hypochondriac and he said "no" as I am not seeking sympathy, recognition or someone to care for me. I agree, I am a very independent and driven aerospace engineer. I just want to go back to being who I was before all this began and I don't wish to worry others.

My EMG is now scheduled for Nov 30th and I feel like I have to do it even if the results are unfavorable and shatter my life. I'm in serious dread however. In many ways I've accepted the possibility and have prepared all my affairs fearing the worst: my estate plan, a will, letters to my relatives, sold things, donated clothes. I've deferred purchasing a home, career advancement opportunities all based on this fear that something is seriously wrong with me neurologically.

Now I am asking, based on your experience, are there other paths I should be pursuing in parallel or other questions I should be asking of my doctors?
Would you go with the EMG if you had to do it all over again or just wait for time to tell with progression?
Does this sound like possible ALS to you? The odds tell me no, but my symptoms, especially the calf atrophy make me fear that it is.

I know this is lengthy and I thank you kindly for taking the time to read it.

JMG
 
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lgelb

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I don't think you have ALS, but it makes no sense to not have the EMG to see if it suggests something more treatable. Since you seem to have put your life on hold based on this fear, it also makes no sense not to try to move past it if the evidence supports doing so. There is no point in prejudging other paths in advance of more data.

I agree the odds against ALS are very much in your favor.

Best,
Laurie
 

JayMelen

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Hi Laurie,

I truly appreciate your prompt reply. I will pursue the EMG path and hope to have answers soon.

To make this all the more puzzling, my 11 year old son started complaining of muscle spasms and twitches two weeks ago. Initially he indicated about once per day in calf areas and last Thursday he said about 7 instances all over his body. Again, I have not mentioned this to anyone in my family. My 23 and me health assessment did not reveal any predispositions. The only thing I can think if is we are more physically inactive due to the pandemic.

Thank you,

JGM
 

lgelb

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Take your son for a walk! You could both have been affected by a virus, or nothing. Separately, in your case, abx use can lead to neurological symptoms.

Stop back after the EMG and let us know.
 

JayMelen

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I had an appointment today with my orthopedic doctor to follow up on MRI from Oct. He indicated thhe MRI showed some "subtle" indications of denervation in left calf. I asked him what causes denervation and he told me that it could be a pinched nerve in my spine or leg, or due to some neurological process. I asked if it were a pinched nerve, why the fasciculations all over my body as opposed to just left calf? He said he could not answer that and I would have to follow up with my neurologist and complete the EMG. My Neuro doesn't think I have a pinched nerve based on my visit from last July. Ortho basically sent me on my way saying this is a neurological issue.

I'm guessing the frequent fasciculations in my calf are due to the denervation. The denervation is leading to calf atrophy and this same process will repeat all over my body since I am twitching everywhere. I am also starting to have more discomfort in the arch of my left foot and the back of my left flexor muscles. At the rate I'm going I may not be able to walk in a month or two due to the discomfort. I feel boxed in, we have ruled out a lot already. I am praying at best this is peripheral neuropathy vs. ALS. But neuropathy leading to atrophy in only one limb? It's also difficult to flex the left inner calf when I sit and stick my leg out to try, and sometimes my foot and calf cramp up when I attempt it. I can still lift up on my toes which gives me some hope, but this is starting to look like inner calf failure and weakness to me while the other muscles compensate.

I just sat in my car after the appointment today feeling totally crushed and hopeless. As I write this it seems I am answering my own questions.
 

Bestfriends14

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I'm really not sure what is going on with you, but you've been told "nor ALS" by several reputable professionals, as well as Laurie. You really and truly are not displaying ALS symptoms. Going down the rabbit hole of melodrama is only harming your mental health. Just a side note- ALS cannot be detected by an MRI. Keep working with your doc.

Best of luck to you and stay safe .
 

KimT

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Jay,
Go ahead and complete the EMG. I know the anxiety from not knowing what's going on can cause. Perhaps a virus or nutritional deficiencies could be a contributing factor.
Let us know how the EMG goes. Just remember, there are a ton of things that an EMG can uncover.
 

lgelb

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I don't understand why you think localized neuropathy can't lead to atrophy in only one limb. That would actually be the norm.

ALS does not present with localized discomfort as you describe. And it is not unusual for pain and twitching in one area, from whatever cause, including a pinched nerve, to be referred to other parts of the body.

Truly, seek counseling so you can stop feeling hopeless. A couple of posts ago, you were worried about your son. Today, you think it's all you. Your fears are running away with you.
 

EricInLA

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A lot of what you've reported is not typical for ALS. Of course I can totally understand your anxiety -- neurological problems are complex and you have symptoms that seem scary. But it sounds like you're making unwarranted assumptions about these symptoms (like the one lgelb points out) which is then leading to your anxiety. I know it's difficult to do, but try to pull back from the rabbit hole, and accept the facts that 1) ALS is very rare; 2) multiple professionals have pointed away from it; 3) you can't diagnose yourself, and 4) nobody on this forum can diagnose you either. I would recommend doing the EMG; otherwise you are suffering mentally regardless of whatever condition you have (which could be various things). I know that even scheduling the darn procedure is scary - I went through that myself. But you'll get through it and will be better equipped to address whatever issues they find. We're here to help.
 

Clearwater AL

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JayMelen, first I must credit you for your extraordinary memory or
recall and chronological order. Fortunately, with all your symptoms
and anxiety your composition, typing, structure and communication
skills have not been affected.

You’ve posted 1,871 words, 110 lines within 18 paragraphs.

You haven’t an EMG yet but then I read…

“I'm guessing the frequent fasciculations in my calf are due to the
denervation. The denervation is leading to calf atrophy and this
same process will repeat all over my body since I am twitching
everywhere.”

I need some help with this one… an MRI can detect denervation?

You have the signs of Health Anxiety.

Many people with health anxiety are often unable to function or
enjoy life due to their fears and preoccupations. They become
preoccupied with bodily functions (breathing, heartbeat), minor
physical abnormalities fasciculation, physical sensations, pain,
perceived weakness and continuing new symptoms.

It’s apparent you have done a considerable amount of research to
neurological disorders but you may consider giving some study
time to anxiety. It so often (maybe more than often) is one of the
ALS mimics.

Let us know how the EMG goes and post the summary/conclusion
found at the bottom of the report. Many times the report is
available the same day or next day.

Calm down until then…
 

JayMelen

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Good Evening,

First, I want to thank all of you who have taken the time to reply to my post. I sincerely appreciate that you take the time to help others like myself. Your advice is truly invaluable. I completed the EMG at Cedar Sinai advanced neurology yesterday and the supervising doctor said the results looked normal. The results are to be sent to my primary neurologist to aid in the medical investigation. They tested my left leg (the one with atrophy in the calf), left arm, and abdomen. He stated that they detected a couple of the fasciculations during the test and they appeared benign. I was not having a major calf twitch episode during the EMG, but I guess that doesn't matter. I asked about possibility of a false negative, and Doctor said likelihood of ALS given my EMG are very verly low. He also underscored they have a reputable ALS center with Cedar Sanai and based on his experience my symptoms do not match an ALS presentation. He stated that my EMG results point away from it.

For those that asked about the MRI (ClearwaterAL and BestFriends14) - I understand that an MRI cannot detect ALS. However, the MRI caused my concerns to skyrocket because it ruled out an orthopedic issue and confirmed (in the orthopedic doctor opinion) a neurological origin to my issues. Remember, I see fault and cause trees in my head all the time (I am an engineer.) Considering everything else that has been ruled out, that sent me down the rabbit hole. I am no expert on MRIs nor claim to be, but what the Orthopedic Doctor said to me was that the results of the MRI in terms of muscle composition suggests some denervation in the calf.

I fully recognize I have heightened anxiety level and I have seen a phsychologist and now a phychiatrist about it since 2018. I fully understand that anxiety and stress can present real and scary symptoms, I am working on managing this. I was not this anxious prior to 2017. It has been very concerning witnessing measurable atrophy, and other real physical symptoms like night sweats, oily urine, and now atrophy and progressive discomfort when I walk. I still suspect that during the process of the ecoli infection either the bacteria or the 3 weeks of Cipro and Flagyl hurt my pancreas and I am not regulating sugar correctly. I have not been able to prove it to date, but will work with my Doctors to get a continuous glucose monitor. Either that or a pinched nerve since I do have "significant lower spine degeneration" per a radiologist due to the Ankylosing Spondylitis.

I am not sure where to go from here, the fasciculations are benign but the leg is atrophic with no diagnosis for it. I will continue working with my Neurologist and PCP. I will erase the prospect of ALS (or that of a false negative EMG result) from my mind. I will only come back here to post my EMG results or if you have a specific question of me.

Again, I thank you immensely and wish you all the best.

JMG
 

jonico

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Wow JayMelen! I really feel bad for you, and I sure hope you figure it out soon. I will also take this opportunity, although there are several other recent posts where I could do so, to say the moderators on this site are awe inspiring...Jon
 

JayMelen

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Here are the Doctor's summary of my test results. I did not get a copy of the waveforms as of yet.

Thank you,

JMG

Comments from the Doctor's Office​


Study Result​

Narrative​

XXXX, MD 12/2/2020 12:16 PM
EMG/Nerve Conduction Study Report
XXXX
Test Date: 11/30/2020

Patient: XXX DOB: XXX Physician: XXX

Sex: Male Height: cm Ref Phys: XXX
ID#: XXX Weight: lbs. Fellow: XXXX, MD

Patient History:
This is a 46-year-old man with history of various symptoms
subsequent to E. coli infection, including muscle twitching in
all extremities since March 2020. Query motor neuron disease.

Findings:
1. The left median motor NCS showed normal distal latency, CMAP
amplitudes, and conduction velocity.
2. The left ulnar motor NCS showed normal distal latency, CMAP
amplitude, and conduction velocities.
3. Bilateral fibular motor NCSs showed normal distal latencies,
CMAP amplitude, and conduction velocities.
4. Bilateral tibial motor NCSs showed normal distal latencies,
CMAP amplitude, and conduction velocities.
5. The left median antidromic sensory NCS showed normal peak
latency and SNAP amplitude.
6. The left ulnar antidromic sensory NCS showed normal peak
latency and SNAP amplitude.
7. The left superficial radial antidromic sensory NCS showed
normal peak latency and SNAP amplitude.
8. The left sural antidromic sensory NCS showed normal peak
latency and SNAP amplitude.
9. The left median and ulnar antidromic sensory comparison NCS
recorded from digit IV showed no significant difference in peak
latency.
10. Concentric needle EMG of the left tibialis anterior showed
few fasciculations and normal MUPs with normal recruitment
pattern. Needle EMG of the left gastrocnemius (medial head) and
vastus medialis showed no abnormal spontaneous activity and
normal MUPs with normal recruitment patterns.
Needle EMG of the left rectus abdominis showed no abnormal
spontaneous activity and normal MUPs with normal recruitment
patterns.
Needle EMG of the left first dorsal interosseous, flexor carpi
radialis, extensor digitorum communis, triceps brachii (long
head), and deltoid (middle) showed no abnormal spontaneous
activity and normal MUPs with normal recruitment patterns.

Impression:
This is a normal study. There is no electrodiagnostic evidence of
motor neuron dysfunction or large fiber polyneuropathy.
The few fasciculation potentials seen appeared to be of benign
morphology.




____________________________
XXXX
Neuromuscular Medicine Fellow

XXXX, MD
EMG Attending
Nerve Conduction Studies
Motor Sites
Latency Amp Neg. Dur Neg. Area Segment Distance CV Comment
Site (ms) Norm (mV) Norm (ms) (ms*mV) (cm) (m/s) Norm
Left Fibular (EDB) Motor
Ankle 3.8 < 5.4 6.6 > 1.00 5.9 20.3 Ankle-EDB 8
Bel fib head 9.6 - 6.0 - 6.5 20.1 Bel fib head-Ankle 29 50 > 40

Pop fossa 12.3 - 5.5 - 6.7 19.6 Pop fossa-Bel fib head 12 44 >
40
Right Fibular (EDB) Motor
Ankle 3.8 < 5.4 6.1 > 1.00 7.0 23.0 Ankle-EDB 8
Bel fib head 10.2 - 5.0 - 8.0 20.4 Bel fib head-Ankle 30.5 48 >
40
Pop fossa 11.5 - 4.9 - 8.1 20.5 Pop fossa-Bel fib head 8.5 65 >
40
Left Median (APB) Motor
Wrist 2.7 < 4.2 12.7 > 4.5 5.8 44.4 Wrist-APB 8
Elbow 6.7 - 12.4 - 5.8 40.6 Elbow-Wrist 26 65 > 50
Left Tibial (AHB) Motor
Ankle 5.3 < 5.4 17.3 > 4.0 5.8 50.4 Ankle-AH 8
Knee 13.4 - 14.6 - 6.4 46.1 Knee-Ankle 42 52 > 40
Right Tibial (AHB) Motor
Ankle 4.9 < 5.4 15.8 > 4.0 5.8 36.3 Ankle-AH 8
Knee 13.1 - 10.9 - 6.0 30.5 Knee-Ankle 40 49 > 40
Left Ulnar (ADM) Motor
Wrist 2.6 < 3.3 8.8 > 5.5 7.0 34.0 Wrist-ADM 8
Bel elbow 5.8 - 8.0 - 7.1 33.4 Bel elbow-Wrist 22 69 > 50
Ab elbow 7.3 - 7.4 - 7.4 32.0 Ab elbow-Bel elbow 10 67 > 50

Sensory Sites
Onset Lat. Peak Lat. Amp. (O-P) Segment Distance Start CV
Comment
Site (ms) (ms) Norm (µV) Norm (cm) (m/s) Norm
Left Median Sensory
Wrist-Dig II 2.3 2.9 < 3.6 39 > 20 Wrist-Dig II 14 61 -
Left Median-Ulnar (Dig IV) Sensory
Median
Wrist-Dig IV 2.3 3.0 < 4.1 33 - Wrist-Dig IV 14 61 -
Ulnar
Wrist-Dig IV 2.3 3.0 < 3.9 24 - Wrist-Dig IV 14 61 -
Left Radial Sensory
Forearm-Wrist 1.45 1.98 < 2.9 19 - Forearm-Wrist 10 69 -
Left Sural Sensory
14 cm-Lat mall 2.5 3.3 - 14 - 14 cm-Lat mall 14 56 -
Left Ulnar Sensory
Wrist-Dig V 2.5 3.2 < 3.3 25 > 15 Wrist-Dig V - - -

Inter-Nerve Comparisons
Nerve 1 Value 1 Nerve 2 Value 2 Parameter Result Normal
Sensory Sites
L Median Wrist-Dig IV 3.0 ms L Ulnar Wrist-Dig IV 3.0 ms Peak Lat
Diff 0.00 ms <0.40

EMG
Side Muscle Nerve Root Ins Act Fibs Psw CRDs Fascic Amp Dur Poly
Recrt Int Pat Comment
Left AntTibialis Dp Br Peron L4-5 Nml Nml Nml Nml 1+ Nml Nml 0
Nml Nml
Left MedGastroc Tibial S1-2 Nml Nml Nml Nml Nml Nml Nml 0 Nml Nml
Brief cramp
Left VastusMed Femoral L2-4 Nml Nml Nml Nml Nml Nml Nml 0 Nml Nml

Left Rectus Abdom Intercostals T6-12 Nml Nml Nml Nml Nml Nml Nml
0 Nml Nml
Left 1stDorInt Ulnar C8-T1 Nml Nml Nml Nml Nml Nml Nml 0 Nml Nml

Left FlexCarRad Median C6-7 Nml Nml Nml Nml Nml Nml Nml 0 Nml Nml

Left ExtDigCom Radial (Post Int) C7-8 Nml Nml Nml Nml Nml Nml Nml
0 Nml Nml
Left Triceps Radial C6-7-8 Nml Nml Nml Nml Nml Nml Nml 0 Nml Nml

Left Deltoid Axillary C5-6 Nml Nml Nml Nml Nml Nml Nml 0 Nml Nml
 

Nikki J

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Thanks for sharing. You may not get waveforms. I did not. Not needed to interpret

good luck in finding answers. Happy no ALS
 

Bestfriends14

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Congrats no ALS! My husband would be very envious. Best of luck to you in your life; you no longer need to post here.

Take good care and stay safe.
 
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