Hi, everyone! I’m a newbie.

I’m new to this and searching for answers. I’m pregnant, with many symptoms similiar to GBS, specifically, the PCB variant. The problem is that the docs have told me that i cannot receive any further testing or any treatment at all until i have the baby. I’m wondering if this is true, and if my protein levels will still be high enough for a proper diagnosis in august (after i have the baby).

I started this insane journey in December. I felt like i was going to die at any minute. My children and i lived with my parents during the week while my husband was at work, because i live in the country and we were all afraid i’d suffocate before the ambulance could get to me, if my breathing got any worse. The doctors told me i’d most likely end up on a vent within a couple days, but sent me home. I later found out that the neurologist had called every neurologist who would be on call for the next couple of weeks, and told them all about me. He absolutely expected me to be in the ER at any time, and wanted to give them a heads-up on my case. i couldn’t believe he sent me home, but he knew i wouldn’t be alone and also knew that i am a registered nurse. That happens a lot with nurses.

On that day, he diagnosed me with Bulbar Palsy, but did not know the disease process behind it. After that, he tested me for MS and for Myasthenia Gravis, all the while telling me that he suspected GB. Since then, I’ve had all the tests that they say are possible, and the only things they’ve pointed out as abnormal were a borderline-high thyroid, a very low vitamin d, and my emg showed muscle weakness in my right arm (the only area they tested). Now I’m just waiting.

I did not end up on a vent, although i was very, very close. The doctors tell me now how scared they were for me, but back then, they were very matter of fact. When i told them i felt like my body couldn’t survive another couple of days “like this”, they just looked at me sympathetically, and couldn’t tell me i was wrong. I appreciated that they weren’t feeding me false hope, but that was definitely the most awkward silence i’ve ever experienced.

My biggest worry is that the tests that diagnose GB won’t be accurate, because we’ve had to wait so long to do the tests. The earliest testing will be atleast nine months after i initially got sick. I am doing quite a bit better now, but im definitely not healthy. I still choke a lot, have mild to moderate shortness of breath constantly, with intermittent episodes of severe shortness of breath. I can move my face normally, most of the time, but with intermittent facial weakness and slurred speech. My gag reflex and soft palate funtion are still absent, but i can eat and drink without a problem most of the time. I have horrible acid reflux just before my facial weakness, fatigue, shortness of breath, and confusion set it. My memory, concentration, comprehension and expression are abnormal, but it is only obvious to those who know me. I frequently feel “electricity” surging throughout my entire body, and have horrible pain throughout my body. My newest symptom is sudden weakness, cramping, and burning in my legs, and then seconds later, my legs completely give out on me. I almost constantly feel like tourniquets are tied around my upper biceps, with weakness, numbness, and tingling in my arms. My legs are constantly weak, and i have a hard time walking more than a couple steps.

There are a ton of stories i could tell you, but i think this is long enough. My biggest questions now are if you folks agree that this could possibly be the PCB variant of GB (contained more to upper body, and usually sparing the legs), and what you think about testing and treatment during pregnancy.

Thanks for your input, and just for being around. It is comforting to have a place to go now to ease my mind, and get things off my chest without stressing out my family.

Take care! Jamie