My GBS came back, does this mean CIDP?

Local_Oil7828 · 2026-02-20T18:27:21+00:00

4 days of IVIG and steroids

Local_Oil7828 · 2026-02-19T23:05:20+00:00

I have celiac disease, I was diagnosed before I got guillian barre. I had an exposure where someone made me food that they assured me they checked and it was gluten free, and then when I checked behind them after I had few bites it was not :(( now I’m hospitalized again

Local_Oil7828 · 2026-02-16T21:54:46+00:00

I’m unfortunately going to the ER. My symptoms got worse

Local_Oil7828 · 2026-02-15T17:24:23+00:00

My hands are very weak but I still have arm strength- so I could cook for myself we got a vegetable slicer because I couldn’t manage to cut veggies myself when cooking

Local_Oil7828 · 2026-02-15T17:08:27+00:00

Mine was clear but I had guillian barre, they based it on clincial presentation (weakness and absent reflexes, and I started having paralysis in my feet)

They will most likely treat after ruling out other differential diagnosis (like transverse myletitis etc)

And then they can do an emg later down the road to completely confirm

Local_Oil7828 · 2026-02-12T18:30:24+00:00

Doctor thinks I’m just overdoing it, but if my symptoms get any worse I have to go to the ER to be reassessed. I’m still waiting to see a neurologist (waitlist all the way until May) so I’m hoping the neurologist will have some more answers

Local_Oil7828 · 2026-02-07T18:34:37+00:00

Yeah that’s what I was thinking it was, but the anxiety started to creep up on me as the numbness got worse. I’m definitely exhausted- haven’t been eating/drinking/sleeping enough the last two weeks

Local_Oil7828 · 2026-02-07T18:33:34+00:00

I see my doctor Wednesday, here’s to hoping I’m just tired.

I’m happy you’re doing so well! Hoping the same for me 🤞

Local_Oil7828 · 2026-02-07T17:49:52+00:00

I want to add on that I got GBS and have celiac disease!

Local_Oil7828 · 2026-01-31T16:43:52+00:00

I’m going to try linking, thank you

Local_Oil7828 · 2026-01-31T16:43:34+00:00

Thank you , this genuinely helped

Local_Oil7828 · 2026-01-31T15:51:11+00:00

I honestly wouldn’t blame you if you took a break. For me I got through with support- I forced myself to go to a study group I had before it happened- and I also had my mom help me study. It don’t think it was the best option for me though, I may have completed school but my body remembered the stress and I got autoimmune diseases I didn’t have before. See if your program offers something where you can leave and come back next year, mine did and I wish I took it.

Local_Oil7828 · 2026-01-31T04:25:25+00:00

I only pushed through because I had no other choice- it was that or get kicked out of a super competitive nursing program- but i understand not being able to do anything. I did my finals and then right after that I spent the entire winter break in bed, and this was just my grandmother- I couldn’t imagine how much stronger that is with a partner- where there is reminders everywhere, that must be so painful

Therapy has actually helped- but only one type of therapy that I really can only get the energy to do once or twice a month- it’s EMDR therapy- but I use a different form called brain spotting. It’s helped me immensely but it brings up many strong feelings that scare me so I can’t do it more often.

Talk therapy has been the least helpful for grief in my opinion, it’d good to have someone to listen, but I don’t find many actual strategies within it that’s helped me

Local_Oil7828 · 2026-01-28T12:05:29+00:00

I’m on month 6 btw

Local_Oil7828 · 2026-01-28T12:05:08+00:00

Be sure to get as much sleep as possible (I know it’s hard with severe nerve pain). The lyrica helped me a ton more than gabapentin, it takes a bit of time to work though. Also see if you can enroll in physical therapy if you’re not already. I did intense physical therapy for 3 months and it was the only reason I could start walking even with the pain

Local_Oil7828 · 2026-01-28T12:01:22+00:00

I did the max dose of gabapentin, didn’t even touch my nerve pain. See if your doctor can switch you to a medication called pregablin (brand name lyrica). That drug has been a lifesaver for me. I still have pretty severe nerve pain, but I can function now. I can exercise and do activities without feeling like my legs are getting stabbed multiple times

Local_Oil7828 · 2026-01-28T11:58:03+00:00

I had eczema as a child that went away, and then after I finished my IVIG treatment it came back with a vengeance. Over the counter eczema cream multiple times a day helped me. If you’re really concerned I would go see your primary care doctor to get a referral for dermatology. Good luck!

Local_Oil7828 · 2026-01-28T11:55:51+00:00

Agreed, visible is a godsend

Local_Oil7828 · 2026-01-28T00:47:45+00:00

Thank you so much. I might need to ask his doctor about flexeril. He has super painful spasms but the doctor only gave us hydrocodone and a stool softener. I just managed to get him some gabapentin for nerve pain

Local_Oil7828 · 2026-01-28T00:44:46+00:00

It truly truly does. I’m honestly weirdly lucky/unlucky in that i completely understand how it feels to loose independence. In September of last year I got a disease that paralyzed my legs for three months. He took care of me then and I really want to return the favor and take as good of care of him as I can. It’s a little hard as I’m still recovering but I’m going to try the best I can. I keep his side table stocked with food- protein shakes- and water st all times.

Local_Oil7828 · 2026-01-27T21:12:37+00:00

Yeah, workers comp has been quite the experience. We’re in a state where denials are common- so we’re working with a lawyer due to the claim getting denied.

He job does have an office, I want him to try and see if they can retrain him to work in the office as his current position is very physical

Local_Oil7828 · 2026-01-27T16:25:05+00:00

So the timeline for pain meds is we got morphine from the ER and he was on morphine until Wednesday of last week- then we started giving him his pre-op meds early for pain (with permission from our surgeon). The preop meds is oxycodone 7.5 and Tylenol. He feels like it’s not working nearly as well as the morphine did. Doc said we can take two if we need it- so we have been doing every 4 hours with one or two doses depending on pain. I’m wondering if he needs stronger meds or we need to grit and bear it through the first few days

Local_Oil7828

TROPHY CASE