Old 02-06-2019, 08:24 PM #1 (permalink)
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Default Haven't been here since 2011 and now I am scared. Triggered again.

So I am back after a brief hospital stay which caused whatever I have to flair up again.

It all began in 2011

*******-------Feb 4-5th 2019-----------*********
So went back to same neuro with exasperated symptoms after a brief stay in the hospital for severe constipation.

After the hospital where they gave me 4 enemas in 12 hours, I had an electrolyte imbalance (low potassium) caused something called bradycardia or slow heartbeat.
Now every time i urinate my heart rate spikes to 140 and when i am done it goes back down. Something called a vasovagal response according to a cardiologist.

within 7 days of checking out of the hospital
all my old symptoms came back but this time with a vengeance.

Left sided weakness, left arm, left leg, neck weakness, swallowing weakness, tongue weakness.
scariest part is swallowing weakness. feels like my entire left side of my swallowing is non-existent. My voice is labored and raspy.
I have fasciculations all over my body (back, legs, arms) with muscles cramping in my left leg and arm.

Had MRI's with contrast of head and c-spine the same day as well as blood tests to rule out a lot of things. MRI's all came back normal.
Had EMG the very next day as neurologist seemed worried. Had mild p

I don't know what my emg results actually mean, if someone can help me understand that would be amazing.

I do not know what would stir this all up again and the doctor keeps saying its not MS but keeps referring to a possible auto-immune response. I am pretty scared right now again.

Can someone help me with EMG as the neuro was aloof, I asked him what he thought and he danced around the answer a bit.

Any help with what the doctor put in here would be amazingly helpful.

Thank You in advance.

Doc notes (EMG and Nerve Conduction Study attached):
Addendum February 5, 2018:
The patient's EMG and nerve conduction study showed a mild ulnar neuropathy at the left elbow. There were equivocal findings suggestive but not diagnostic of myasthenia. There were minimal changes on needle exam that were nondiagnostic and may fall within the broad range of normal. Mild prior C8 radiculopathy in the left cannot be ruled out

mild left ptosis on 60 second eyebrow raise.

Brain and cervical spine MRI are normal

As the patient has had persistent bulbar symptoms for a number of years, had an upper limit of normal ACHR antibody, and a borderline EMG and nerve conduction study/repetitive stimulation given that his symptoms are quite bothersome is reasonable to try an empiric trial of pyridostigmine. I've discussed this with his UCLA cardiologist who is comfortable with this as it may also help any orthostatic symptoms that he has.

We are still awaiting a thoracic and lumbar MRI. Other potential should be considered as well a lumbar puncture if he does not improve appreciably. Many of the symptoms would not be explained by myasthenia so he may have a more widespread autoimmune diathesis. Referral to rheumatology will be revisited after imaging.

I'll also check to see if he's had a formal swallowing evaluation to get a more objective sense as to the cause of his symptoms of dysphagia

Summary of EMG Testing

Routine nerve conduction studies were performed on the left side, using a wrapped warm pack if needed to maintain skin warmth. The median motor, sensory, and F-wave, the radial, ulnar, and sural sensory, and the tibial and peroneal motor and F-wave responses were normal. The ulnar motor response was mildly to moderately delayed across the elbow. Comparison testing, a sensitive indicator of median neuropathy at the wrist, was normal.

3 Hz repetitive stimulation of the left spinal accessory nerve, recording at the trapezius before, immediately after 30 seconds of volitional activation, and at five 1-minute intervals afterward, revealed borderline decrements between 2 and 4 minutes post exercise.

EMG examination using a sterile, disposable, monopolar needle electrode was performed on the left upper and lower extremities, lower lumbar paraspinal muscles, and two cranial-nerve innervated muscles. There were mild prior neurogenic changes in distal muscles.

Conclusion: This study shows no definite abnormalities other than a mild ulnar neuropathy at the left elbow without convincing axonal loss. In the appropriate clinical context, the repetitive stimulation findings might support a mild post-synatptic neuromuscular junction disorder (such as myasthenia). The mild EMG changes in distal muscles fall within the broad range of normal but may indicate prior C8/T1 radiculopathies. Please see my addended office note from tomorrow for clinical correlation.

Review of UCLA records from 2011-12 revealed mention of an outside EMG showing prior denervation in the left SCM. Dr. Pleninger raised the possibility of recurrent herpetic infection.

Also in 2011 binding and blocking were well within normal limits. Modulating was high normal 18 with 20 being the highest threshold.
Attached Thumbnails
Haven't been here since 2011 and now I am scared. Triggered again.-screen-shot-2019-02-06-5.01.34-pm.jpg   Haven't been here since 2011 and now I am scared. Triggered again.-screen-shot-2019-02-06-5.01.49-pm.jpg   Haven't been here since 2011 and now I am scared. Triggered again.-screen-shot-2019-02-06-5.02.15-pm.jpg   Haven't been here since 2011 and now I am scared. Triggered again.-screen-shot-2019-02-06-5.02.34-pm.jpg   Haven't been here since 2011 and now I am scared. Triggered again.-screen-shot-2019-02-06-5.02.56-pm.jpg  


Last edited by lgelb : 02-06-2019 at 08:35 PM Reason: link to prior thread
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Old 02-06-2019, 08:37 PM #2 (permalink)
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

Mod note, prev threads:

Sick of No Answers
I'm Back With Troubling News
Finally Some Answers, Any advice would be welcome
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Old 02-06-2019, 08:38 PM #3 (permalink)
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

They want to try a drug that is used in myasthenia to see if it helps. They are also thinking they might refer you to a rheumatologist after doing the MRIs, if it still looks like you might have some combination of autoimmune problems.

There is no suggestion that you have ALS. At all.

So you're in the wrong place -- which is great news.
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Old 02-06-2019, 08:53 PM #4 (permalink)
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

In ALS, there are no remissions which is what you describe with symptoms before 2011 and now retuning. Also, if you had ALS since 2011 you’d likely either be dead or profoundly disabled.

A relapsing and remitting course can be seen with autoimmune conditions. Your report mentions some ptosis (eyelid droop) on 60 second eyelid raise. That is suspicious for myasthenia gravis , an autoimmune condition.

Your EMG indicated some evidence for a radiculopathy and with repetitive stimulation suggesting a “post synaptic neuromuscular junction disorder (such as myesthenia)”.

You also had an upper limit of normal level of acetylcholine receptor antibodies (ACHR). These are often seen with myasthenia gravis.

So it sounds like myasthenia gravis is is the working diagnosis, and your doctors have a plan for you — a trial of a drug called Pyridostigmine.

Hey, that’s good news! No ALS, and there’s something you can try for your symptoms. Wahoo!
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Old 02-06-2019, 11:48 PM #5 (permalink)
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Default Re: Haven't been here since 2011 and now I am scared. Triggered again.

So the EMG's and Nerve Conduction Studies look OK to you? There were a few outlier results plus my symptoms. Thanks so much for your input.
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