Sudden onset neuropathy, left leg/ankle weakness, increasingly widespread muscle fasciculations, fatigue, and exercise intolerance. 2 negative EMGs.

[bandmom]

Hi All. I am 52 year old mother of 2 teenagers and work full time. I had Covid in December, then EBV for the 3rd time in January/February. I fully recovered but did notice some mild neuropathy type symptoms on rare occasion over the next 6 months. I also had lingering right ear pain that ENT advised may be neurological.

Then, 8 weeks ago, after feeling great and walking 5-8 miles a day in early August on vacation, I had seemingly sudden onset neuromuscular symptoms. It started with a severe one sided muscle spasm in my chest that spread around to my back. That resolved in 5 days. 2 weeks later I noticed lack of cold sensation in both shins/ankles. Then a numbness that quickly spread to my inner lower legs and ankles over the next 5 days. During that time I felt weakness I never noticed before in my right ankle and impaired balance. Walking downhill suddenly felt unstable. I also experienced a very strange intense cramping of my left knee on a walk, after which my thigh twitched for weeks. This was all within a a week.

After Labor Day I took myself to the hospital because the right leg weakness. Brain, cervical, thoracic and lumbar MRIs were clean. Elevated CK (800) in hospital, which was 5 days post last significant work out (2.5 mile run). CK subsequently went down. EMG/NCS hospital was clean. I had a second EMG/NCS a week later - also clean. However it wasn’t until recently (now a month after the second EMG) that this wide spread muscle twitching started. It’s now almost constant in my feet, frequent in both calves and knees, and becoming more frequent in the upper legs, left shoulder, back, hands and trunk.

The twitching (which was occasional before) really ramped up in the the past week, at the same time the electric shock symptoms (previously intense) have calmed down. I still have general fatigue, muscle exhaustion and soreness with exertion, but less cramping in the forearms and hands, and less muscle pain. I also stopped trying to do much of any exercise and am barely walking (1 slow mile v 3-4). One neuro sent me to an ortho for the leg weakness and sciatic like pain/weakness from hip to ankle. Ortho says hip xray normal. Now I’m schedule for a lumbar plexus MRI.

This constant muscle twitching that developed over the past week is stressing me out beyond belief thinking I could have ALS. In addition to neuro I am seeing a rheumatologist next week but don’t know how rheum can explain all this. I am wondering if the EMGs could have been done too early since the twitching was localized at that point. I should add that leg and ankle weakness is objective (as per neuro) but not significantly impairing my function thus far. Any insight would be appreciated.

 

[ShiftKicker]

Hello-

Sorry you are finding yourself in need of answers about your health, this must be very stressful for you. Please make sure to read here: Read Before Posting, as you will find it reassuring with regards to why what you report does not indicate concern for ALS.

You list neuropathy as a major part of your concern. This points away from ALS/MND. It sounds like you are under the care of multiple specialists and they are working on narrowing down the cause. ALS really doesn't start with extensive sensory issues, so your doctors will be looking in a different direction. While internet searches direct people here when they look up twitching, twitches can be caused by many different conditions. If twitching is caused by damage from ALS, the EMG will pick it up. The "Read Before" provides further explanation.

I am hoping you will soon find some answers as you work with your doctors. Please take care

 

[bandmom]

Hello ShiftKicker,

Thank you for your response and your kindness. The past 2 months have been very stressful. I did read the "Read Before Posting." However, I have read a number of articles online of cases/studies where: early EMGs were negative; that point to fasciculations as a primary symptom of ALS; and that indicate small fiber neuropathy symptoms are seem to present in a reasonable percentage of individuals with ALS. While it is very difficult for a lay person to fully understand some of these medical studies and articles, these general conclusions/findings are terrifying for those dealing with similar symptoms. The constant widespread twitching combined with the right leg/ankle weakness are the two symptoms that are now sending me down the rabbit hole. And it's disconcerting that the electric shocks, which were initially a prominent feature, have been replaced by these more constant widespread fasciculations.

My neurologist did not instill confidence either. I asked him what happens if the lumbar plexus MRI comes back negative. His response was, verbatim, "then we're up a creak." He also suggested that if I have concerns I should see an ALS specialist. I was hoping he would advise that we've already ruled it out based on the negative EMGs, but instead he advised that the protocol would be to repeat the EMG and MRIs after a few months. You can see why I am questioning whether the EMGs could have been performed too early based on the equivocal response from my neuro.

I will add for more detail that the first EMG was conducted on the leg where I had the initial knee cramp and subsequent twitching. The second EMG was conducted on the leg with the weak ankle/hip (subjective at that time - not confirmed as mild objective weakness until 4 weeks later). At that time I had cramping and pins and needles, but not this widespread twitching. The second EMG included the upper extremity with the worse neuropathy symptoms, subjective hand weakness (never objective) and cramping (forearm/hand) was performed. Both tests were performed by neurologists, not technicians.

I will keep chasing down answers with both neurology and rheumatology. In the interim, it would be helpful for my mental health and functioning to have more reassurance than my neurologist was willing to give me that ALS should be ruled out as a potential concern.

You time and consideration is greatly appreciated.

 

[Clearwater AL]

Bandmom, If you could post the Summary/Conclusion of your last EMG
it would very helpful to understand your situation. You've had two EMGs
so ALS looks as it is other issues you are suffering from.

Do work with your doctors so your can soon have a worry free future
with your two teenagers

 

[lgelb]

I would move on from your neuro. He sounds out to lunch as regards ALS and shouldn't be scaring you about things. When imaging is normal, the only other option is very, very, rarely ALS, which I don't think you have, because:

ALS does not present as "electric shocks" (sensory neuropathy) that turn into fascics. Constant widespread twitching is not how it presents either, because the motor neurons do not all die at once, or you wouldn't have movement right now.

But even if it did, you had two EMGs of different areas and the hallmark of an ALS EMG is certain signs of damage even in areas that you think are fine.

Stop reading. Every one-off anecdote you see has a story behind it you don't know. Keep living. Covid + a 3rd EBV infection is easily enough to account for everything you've described.

Elevated-to-normal CK can mean many things. I'd imagine the rheumie will run some additional labs that may shed light.

It is very possible that your new issues are not neurological at all.

 

[bandmom]

Thank you both Clearwater AL and Igelb for your responses. I have uploaded the first EMG from the hospital on 9/6/2024, of my left leg and right arm. The left leg has not experienced weakness. At the time of the EMG, I had experienced cramping and ongoing twitching of the left knee, and neuropathy symptoms in the left foot. The right arm had experienced pins and needles in the hand and cramping in the hand/forearm, as well as shaking.

Unfortunately, the neuro I subsequently saw in office (affiliated with different more reputable hospital but still not NYC) did NOT upload any EMG report for my right leg/foot (the one with objective weakness and which has been twitching constantly the past 2 days) and right arm, to the patient portal. I'm floored. He conducted the exam in his office on 9/16/2024. I've read his credentials and he is trained in this. He advised verbally that it was a completely normal study. I will make a call first thing Monday morning, press them for a copy of the report, and will upload upon receipt.

In the meantime, I am going to do my best to enjoy my oldest being home from college for the weekend notwithstanding this very distracting constant twitching.

Again, thank you both for your input and your time.

 

[bandmom]

Hello All,

Went to rheumatologist today. She did not have any insight regarding symptoms as they do not fall within her wheelhouse. She did, however, order the usual full blood work up. It can't hurt to keep checking boxes.

I was able to secure the EMG/NCS report from 9/23/2024 (right arm and leg). It was a week later than I realized, but I still was not experiencing these constant muscle fasics in my right foot at that time. In any event, I am uploading the report here. It does say early carpal tunnel on the right wrist. The 9/6 study did not note that.

If anyone with experience interpreting EMG/NCS results for MND/ALS would be willing to review and weigh in it would be appreciated.

Many thanks. - Bandmom

 

[Nikki J]

That is a completely normal emg. No signs of ALS at all. Re the median nerve. It isn’t unusual for a mild issue to appear on one test and not the other. Possibly a tiny variation in electrode placement or perhaps your initial test was borderline normal This is if you are sure that nerve was even tested last time. You can ask your doctor but this has nothing at all to do with ALS. This isn’t “ the start” of anything related

 

[bandmom]

Thank you, Nikki J. I am certainly praying that is the case. Fascics can really be alarming, especially with weakness.

 

[bandmom]

All,

Since my last post my symptoms have progressed. Fascics still continuous in feet. Periodic daily twitching in left shoulder/shoulder blade, elbow, both thighs, hips, left calf and knees. Now it’s spread to my right hand. The constant twitch in my right calf stopped and now it is a strain to toe raise because my right calf is noticeably weaker.

My whole right leg from the ankle to my hip feels weak. The neuro noted mild clinical weakness in my ankle and leg 2 weeks ago. It’s definitely gotten worse.

New symptom is now more frequent painful muscle spasms (as best I can describe them) in my forearms and triceps. The muscle in the area feels like it seizes up for no reason. Also have painful aching in fingers, toes and wrist. It gets worse at night but it happens throughout the day.

I have gone from walking about a mile (down from my usual 3-5) to barely making it around the block. The weakness in my right leg is causing significant pain in my hip/back of leg when I walk any distance. Additionally, the general fatigue this week has kept me mostly on the couch, which is nothing like me. I have no appetite (eating is exhausting) and I’ve lost 10 pounds in the past 2 months.

My neuro has insisted I see an ALS specialist at Mt. Sinai to be evaluated. He will not repeat the EMG himself. That appointment is in December. I will also call Mass General.

I am beside myself with dread. There is something very wrong and from everything I’ve read online and in this forum, the symptoms fit but for the negative early EMG.

Before my last post I did not understand the difference between Upper and Lower dysfunction. With these muscle spasms and the painful aching in my extremities, I now feel like I have both. I am praying for another explanation but from everything I’ve read this all seems to point directly toward ALS. If anyone has any further insight on my symptoms and next steps I would greatly appreciate it.

Thank you. -Bandmom

 

[Nikki J]

I don’t know exactly what you mean by spasms however aches are neither an upper or lower motor neuron signs and spasms don’t really sound like them. Your neurologist should have detected umn and lmnsigns on exam. Progressive weakness is concerning but non specific as weakness has many causes both neurological and other. I am glad you are going to Mt Sinai and December is not far away. I will be surprised if you would get offered anything sooner at MGH

Best of luck to you