I'm 16 and was diagnosed in early January of this year. I've had symptoms on and off since then, but I've been out of the hospital since mid March. This week I've been having symptoms and feelings that I haven't had since I was in the hospital being treated. I'm having nerve pain that my meds aren't helping, I've been vomiting, headaches, dizziness, loss of appetite... and I've also lost weight and I'm already very skinny from losing weight earlier this year. My parents are trying to figure out what to do. Can they do another round of IV/IG if it's bothering me that much? or what should we do? We went to the doctors multiple times but all we've been told is "it's just part of the process" which is very frustrating, when I'm feeling so miserable. I'm a junior in high school and can't keep missing school. please help?!
I'm also very very fatigued. I haven't been this exhausted since I was first diagnosed, I have barely been able to get out of bed and I have to be lying or sitting down constantly. Can anyone tell me what to do? Should I contact my neurologist or seek help in the hospital with IV/IG? I've never had a flare up or relapse and these symptoms are scaring myself and my parents.
Should I make an appointment with my neurologist or go in to the hospital with my parents and have the ER look at things. We just don't really know how to handle it. mdolich said:
I would get in and see your neurologist ASAP.
Yes they can give you more rounds of IVIG. I get IVIG every three weeks and have since 2006. I was re-diagnosed CIDP (chronic form/cousin of GBS) because of relapses.
I will share this discussion with all members so you can get more advise from the community.
Good Luck, "Stay Strong and keep a Positive Attitude"
It is hard to make a recommendation, so I’ll just say if it were me I’d go to the ER right now so they can be treating you right now. I would not wait to get an appointment with my neurologist. Nor would I accept the excuse that it is just part of the process. Every case is different and be should be treated differently. I don’t know where you live, but the bigger the city, the bigger the hospital, the greater the likelihood they have dealt successful with GBS before. You don’t need a doctor reading his old med school book on what GBS is and how to treat it.
This happened to me, too right after they released me from the hospital. I'm pretty sure it was actually withdrawls from the prescription steroids. I actually went to a SUPER GOOD chiropractor that knew what he was doing... I kid you not, that same day I went home and about ate everything in the fridge and felt MUCH better!!!!
I'm still tired to this day, and it's been almost 30 years. I tire super easy and I work 6 days a week. I have no idea sometimes how I do it.
Emma said:
I'm also very very fatigued. I haven't been this exhausted since I was first diagnosed, I have barely been able to get out of bed and I have to be lying or sitting down constantly. Can anyone tell me what to do? Should I contact my neurologist or seek help in the hospital with IV/IG? I've never had a flare up or relapse and these are scaring myself and my parents.