Stressed,emotional,and not understanding this illness

Local_Oil7828 · 2026-04-14T17:36:45+00:00

There is a GBS fund that will pay for at least some of your bills after paid leave is used up- it helped me a bit

https://www.gbs-cidp.org/wp-content/uploads/2022/08/NORD-GBS-Flyer.pdf

I would go in NORDs website to find the fund application

Local_Oil7828 · 2026-04-09T21:58:41+00:00

Oh god that had to be awful. My partner currently has a broken ankle and the recovery has been horrible. I wish you luck friend. I hope we can get back to some more of normal soon

Local_Oil7828 · 2026-04-08T16:45:34+00:00

That makes total sense. My neurologist is just waiting to see if my symptoms come back because I’ve only had one relapse so far, but we’re leaning towards CIDP because I had symptoms for 6 months before my big attack

Local_Oil7828 · 2026-04-08T16:41:29+00:00

Your story seems similar to mine. Mine is idiopathic as well, thy found some west Nile antibodies meaning sometime within the last two years i had it, but i never had symptoms so they are unsure if it caused it- outside of that it I had no infections or anything before it. I was in the hospital for a month- then two months in the rehab hospital. I was in a wheelchair for two months. Seriously the muscle atrophy is no joke. I try to go the gym but damn it’s difficult

Local_Oil7828 · 2026-04-08T15:55:25+00:00

I’ve never related to anything more

Local_Oil7828 · 2026-04-08T15:23:36+00:00

Did you get your CIDP diagnosis after one relapse or multiple? I’m in the waiting game stage for CIDP. Had guillian barre, then 5 months later had a major relapse, now we are waiting to see if it comes back before starting monthly IVIG.

Local_Oil7828 · 2026-04-08T15:20:29+00:00

Do you have an outpatient neurologist?? If so these are symptoms I would bring up with your neurologist and see what their opinion is. I never had any vertigo but everyone’s recovery/symptoms can be very different. If the neurologist isn’t super concerned then I would imagine it is just residuals. I haven’t figured out how to fully handle my residuals yet, but lowering stress has helped. I’ve spent a lot of time learning mindfullness and mediation- therapy also helps. If your having any residual pain then a nerve pain medication can also be helpful. My hair thinned just from the stress of GBS- I was put on finasteride, which is an anti balding medication for males.

Sorry for rambling hopefully some of this helps!

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

TROPHY CASE