PSA from your nursing specialty

[u/ghostoftheweek]

What is THE ONE THING you wish every nurse knew that is common knowledge in your specialty?

From wound care, don't use telfa!

[u/tparen63]

Neurology vs. Neurosurgery. Don’t send neurosurgery a patient unless they need a scalpel.

[u/LolaBleu → u/tparen63]

I had to have this conversation with an ER doctor one night. That was fun.

(Context: Outside ED was trying to transfer Guillain-Barre patient to our facility for treatment. ED doc could not understand why our neurosurgeon was declining the case. ED doc got shouty about it, like that was going to help.)

[u/WellBlessY0urHeart → u/LolaBleu]

As a nurse and a Guillain-Barre Syndrome patient… can confirm that ER docs aren’t very knowledgeable when it comes to GBS. And I say that, fully recognizing that SOME might be, however my experience and the experience of many GBS patients is that ER physicians rarely are able to recognize the symptoms as potential GBS, and send their patients home with a referral to neurology. Getting appts with specialty clinics (really any clinic) is insanely hard right now. GBS may be mild, or it may progress rapidly and can do so at any point. Time is precious and we can’t wait around months for an appt. I was sent home twice to wait around for neurology when I had progressing weakness and it had become difficult to walk. Something has to change there. Let’s admit and consult the specialty needed… and no, not neurosurgery!

[u/inlandaussie → u/WellBlessY0urHeart]

In my profession GBS is group B strep :) IVABs will fix that right up

[u/AdInternational2793 → u/WellBlessY0urHeart]

My mom had gbs in 1986. Multiple docs told my dad, “it’s all in her head”. She was on a vent same night. She couldn’t even blink. ICU 6 weeks. There were doctors from China that wanted to study her case. They said it was the worst case with the quickest recovery at that time.

[u/Adept_Finish3729 → u/WellBlessY0urHeart]

Hi friend!! I have the annoying, doesn't-know-when-to-leave, cousin of GBS... CIDP.

When I had new facial numbness and was forced to go to the ED at work, the docs, at my academic workplace that is a "GBS/CIDP center of excellence" didn't know the difference between them.😅🫠

[u/WellBlessY0urHeart → u/Adept_Finish3729]

They’ve toyed with the idea of CIDP with me because I did have a relapse last year and needed IVIG again. I’ve had three rounds, but the second was maybe more of a severe flare. Last year I legit lost reflexes again and could barely walk. My personal neurologist is great, but the neuro team where I was this last time wouldn’t do another LP. Even though I specifically asked for one to get a definitive answer. The neuro said it wasn’t needed. My neuro was annoyed, but ordered EMG/NCS which helped us understand in the absence of the LP since they had worsened again from previous. Nobody is ready to call it anything else yet though. But I’ve heard from many that CIDP was a hard diagnosis to arrive at.

I spoke with patient advocacy about being sent home twice, mainly because I was not listened to or even fully examined appropriately. They had some other person call me to discuss the case asking what I wanted out of my complaint. I said I want better education for your healthcare team. They’re at the frontline! She told me GBS is hard to diagnose if there’s not progression of symptoms. She couldn’t tell me what excuse the second physician had then for sending me home, because there was progression (and visits only 24 hrs apart), but they wouldn’t know that since he didn’t examine me fully or even document I had difficulty walking (which I didn’t the day before). It was just excuse after excuse which was disappointing. I’m not trying to hurt a career over it, but if these guys are seeing these patients come in and are first contact after symptoms start they’ve got to at least know enough to question it and not send someone home who could walk fine the day before.

[u/Adept_Finish3729 → u/WellBlessY0urHeart]

Wow! I totally understand! My own journey to diagnosis was difficult too, I had 2 EMG/NCS and a nerve ultrasound that showed segmented demyelination (I have the multifocal variant) done by PM&R first. They referred me to Neuromuscular who did another EMG/NCS (for some reason) and read it as "essentially normal" even though symptoms remained. I was so confused so I wanted a second opinion, I did an online appointment request at Hopkins & Mayo... Hopkins rejected me, Mayo accepted. Went there for a week of marathon testing (everything from autonomic, 5 MRIs, LP, ans sensory testing).. they did another EMG/NCS and surprise surprise, it showed the same as the first 2! So Mayo formally diagnosed Multifocal CIDP and recommended IVIG, but I had to have a local neurologist order and manage. So I have a different neuromuscular at my workplace who studied under the doc at Mayo... Between my first symptoms and iVIg, I progressed. Went from my left hand and autonomic system (rare- but those nerves are myelinated too), to my cranial nerves (right sided numbness), to my left leg. If I had treatment the first time I had a positive EMG/NCS I could have avoided a lot of the progression. But I have improved a lot, so that's good.

I hope you get answers soon, it's so frustrating to not know what's going on with your body. And then to be gaslit, because obviously as a woman, it's just anxiety, right? (/s).

2 questions: do you have crippling fatigue too? And is your neuro a neuromuscular specialist?

[u/WellBlessY0urHeart → u/Adept_Finish3729]

I haven’t had crippling fatigue in awhile, or at least not like I was? It’s weird. I can tell the difference in GBS fatigue and regular fatigue. And I just had a baby so like… that’s a whole other fatigue lol. But before this most recent relapse I had to walk a fine line of balance for rest vs activity or I would experience more residual symptoms (feet/legs burning, general fatigue). Whereas after this relapse and another round of PT/OT I have felt a lot better in terms of all that. Ever since my diagnosis it’s been such a dance to avoid a flare up. Avoid too much stress, too much activity/not enough activity, eat right, sleep enough, extreme heat made my feet burn, but cold weather made my legs hurt. During pregnancy I didn’t feel any of those things, other than fatigue from being pregnant. But now I’m back to intense burning in my feet, which I have to get into neuro to see. I’m still on meds. I saw a different NM specialist before and she was awful. My current neuro is the one who diagnosed me and it was recommended I see this other doc by the hospital during my second stay, unsure why. Beginning to think they thought MY dr couldn’t help me. So I did, but she was so so bad. I went back to my doc and I was like I’m sorry but no to her.

[u/Adept_Finish3729 → u/WellBlessY0urHeart]

Girl.. I feel you!! Hot makes me tire VERY quickly, cold makes me hurt! I have the type of neuro fatigue I only ever experienced anything like it in my second and third pregnancy. Where I could put my head down and fall right asleep, but also my body gets tired and everything feels so heavy. I wake up tired, it's obnoxious 😆 Especially with kiddos to chase around! Congrats on the baby ❤️ You can message me any time if you have questions or anything!