Reply To: My story

I did receive to ivig after all for 5 days straight on week of Christmas. At this Point I would say that ivig was unsuccessful . I have tried changing diet etc to help with energy nothing seems to really do trick. Also been getting done a monthly AFT test my last one came out much worse then previous months so I go again next week. The nuerologist also believes that I may some more just POTS with some ear issues and balance vertigo dizziness now occurring. I have scheduled a number of different tests regarding hearing and balance. Has anyone gone through anything like this the hypotension I feel has decreased but now I have more of “exhausted brain” feeling daily. Fatigued thinking is more way to think … More I speak or do a visual activity the more dizzy and fatigued I feel. It’s different from my original onset. It’s been 8 months since the first onset and I continue getting numbness and my stomach is still an issue. Is there anyone who can recommend a world rebound doctor for gbs/CIDP I’m at my wits end here willing to travel anywhere to get more insite and what else I can do if anything besides my wait and see rhetoric from my current docs