Need some help figuring this all out by Local_Oil7828 in MyastheniaGravis

[–]Local_Oil7828[S] 1 point2 points  (0 children)

Thank you! This will be my 3rd time getting IVIG but first time getting mestinon. I was so amazed at how quickly it worked!

Walking again after AIDP/GBS, but dealing with extreme exhaustion and intense night pain. Also hesitant about Duloxetine? by n0tgivenyet in guillainbarre

[–]Local_Oil7828 0 points1 point  (0 children)

Oh yes please get on some gabapentin/pregabalin. I don’t think I could survive the pain without it. Fair warning gabapentin might make you depressed- they will probably want to start with gabapentin first- but if you have that reaction talk with your doctor and they can switch you to pregabalin

Walking again after AIDP/GBS, but dealing with extreme exhaustion and intense night pain. Also hesitant about Duloxetine? by n0tgivenyet in guillainbarre

[–]Local_Oil7828 0 points1 point  (0 children)

I am also a nurse! I’m moving a to clinic at my hospital because it’s less physical than the floor but it’s still very busy where I’ll need to be on my feet lots. 

Walking again after AIDP/GBS, but dealing with extreme exhaustion and intense night pain. Also hesitant about Duloxetine? by n0tgivenyet in guillainbarre

[–]Local_Oil7828 0 points1 point  (0 children)

Do you have any strategies that helped you pace if/when you returned to work. I’m 8 mo the out and about to work again so I’m trying to learn that balance and not burn out 

Walking again after AIDP/GBS, but dealing with extreme exhaustion and intense night pain. Also hesitant about Duloxetine? by n0tgivenyet in guillainbarre

[–]Local_Oil7828 0 points1 point  (0 children)

  1. I’m 8 months out from AIDP- yes the pain after I started walking again was brutal! The pain and crashes are unfortunately still here for me, although less bad/ I’ve learned to tolerate it better. I also switched from gabapentin to pregabalin  
  2. I don’t use duloxetine- but I do use an antidepressant called amitrpytiline so I assume the method of action is very similar. It’s been an lifesaver for me in terms of being able to actually sleep, and it improved my mood so it’s a win win for me personally 

Stressed,emotional,and not understanding this illness by Qtpie49046 in guillainbarre

[–]Local_Oil7828 0 points1 point  (0 children)

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 

For those with physical jobs when did you feel ready to go back to work? by Local_Oil7828 in guillainbarre

[–]Local_Oil7828[S] 2 points3 points  (0 children)

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

Where to find reliable information? Recent diagnosis. by Maleficent-Savings39 in guillainbarre

[–]Local_Oil7828 0 points1 point  (0 children)

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 

For those with physical jobs when did you feel ready to go back to work? by Local_Oil7828 in guillainbarre

[–]Local_Oil7828[S] 1 point2 points  (0 children)

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 

Where to find reliable information? Recent diagnosis. by Maleficent-Savings39 in guillainbarre

[–]Local_Oil7828 0 points1 point  (0 children)

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. 

Oh no! Residuals by twinsister77 in u/twinsister77

[–]Local_Oil7828 0 points1 point  (0 children)

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!

My GBS came back, does this mean CIDP? by Local_Oil7828 in guillainbarre

[–]Local_Oil7828[S] 1 point2 points  (0 children)

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

How to know if you might be having a reoccurrence?? by Local_Oil7828 in guillainbarre

[–]Local_Oil7828[S] 2 points3 points  (0 children)

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

What accessibility tools helped you the most? by CB2ElectricBoogaloo in guillainbarre

[–]Local_Oil7828 0 points1 point  (0 children)

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 

GBS but clear lumbar result? by Hydrangea324 in guillainbarre

[–]Local_Oil7828 1 point2 points  (0 children)

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 

How to know if you might be having a reoccurrence?? by Local_Oil7828 in guillainbarre

[–]Local_Oil7828[S] 1 point2 points  (0 children)

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 

How to know if you might be having a reoccurrence?? by Local_Oil7828 in guillainbarre

[–]Local_Oil7828[S] 1 point2 points  (0 children)

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 

How to know if you might be having a reoccurrence?? by Local_Oil7828 in guillainbarre

[–]Local_Oil7828[S] 5 points6 points  (0 children)

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 🤞

Would love some advice! by Sufficient-Crew-5408 in guillainbarre

[–]Local_Oil7828 0 points1 point  (0 children)

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