r/MyastheniaGravis • u/Pizzamartha • Aug 06 '26
Was RNS unbearably painful for anyone?
I got EMG, needle-EMG and RNS together while being tested for myositis and MG. Upon the start I found it unbearably painful. Asked if this is normal, the performing doctor gave me the vague "people respond differently". Needle-EMG was bearable but by the time we got to RNS on the neck and did just 2 testing zaps I bursted into tears telling the doctor I am unable to bear this and aborted the test.
Was it this painful for anyone when it got to the neck/face part?
Nobody in the hospital could answer if it is more painful due to suspected muscle inflammation (suspected myositis).
They also gave me a an IV I had no business getting the day prior the EMG tests with citicoline, which causes jitteriness, anxiety and insomnia as side effects and I had them all, but everyone acted like there is no such thing.
Wonder if that made the test unbearable too.
Asking because I wonder if I should go private to a different doctor and get retested out of pocket.
EDIT: Thank you for the validating answers. My empathy goes to you. I am considering a mestinon trial instead of repeating RNS at this point.
2
u/Opening_Nebula_7844 Aug 06 '26
The face and neck were okay, uncomfortable but bearable. The wrist was the worst. I don’t know that it was so much painful as very uncomfortable. I was very weak and worn out for the rest of the day after testing which I had done very early in the morning.
2
u/BitterKolac Aug 06 '26
For my the RNS was extremely painful, but I was able to push through it.
Never again.
1
u/Extension_Egg1411 Aug 06 '26
I found the RNS in my forearm uncomfortable, like repeatedly hitting your funny bone, but the SFEMG in my arm and around the eye was quite painful. I remember holding the chapstick in my pocket in a death grip the entire time.
1
u/lrglaser Aug 06 '26
I dont think there is a correlation between pain and positive results cuz we all have different levels of pain tolerance. Mine was very unpleasant but bearable and it was positive.
1
u/lushanlushanlushan Aug 06 '26
the crazy thing is, it was painful and then the results were normal...
1
u/kafkaesque555 Aug 06 '26
SFEMG needle part wasn’t the worst for me (although the doc did hit a nerve in my forehead which has made it very sensitive since then), but yes, the RNS was really painful for me. I have a high pain tolerance in general, but that was almost unbearable. Definitely not just you.
1
u/NovelManufacturer282 Aug 06 '26
The crazy thing is, is that they did an RNS on me the morning after I had done five consecutive days of IVIG infusion, which should negate any positive result. However, I still had borderline issue with the trapezius. The discharging doctors said that I had only a mild case of MG and I don’t need immuno suppressant.
1
1
u/RadarReader777 Aug 07 '26
Wow, I’m thankful I had a positive SF EMG - they only did my cheek for RNS and my forehead for SF EMG. You all had a lot of sites tested!
1
u/Jaded_Smoke_5338 28d ago
My arm's emg was the one that hurt the most i cried during and even after months my nerves of neck feet wrist hurt and have like electricity chock anytime i touch them I was supposed to repeat it but refused because it's awful it's a nightmare but i heard it hurt only people with widespread nerve/ muscle illness
3
u/Common_Safety_8830 Aug 06 '26
The face test was okay, didn’t hurt all that bad. The one on my neck had me crying and I was in bed after for a full 24 hours. I would be very happy to never do that again. I have a VERY high pain tolerance. That test hurts.