Hi, everyone! I’m a newbie.
AnonymousJune 2, 2008 at 8:41 pm
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
AnonymousJune 4, 2008 at 9:27 pm
Thanks guys! I really appreciate your input!
I talked to my obgyn yesterday, and he said that he’d like to give me an epidural, so i asked him if he could have the anesthesiologist take my spinal fluid at that time. I’ll find out what they said in about two weeks.
just hate this waiting period and wonder if it is even necessary, but i am very grateful that i can pretty much take care of myself and my children now, with minimal help. My husband does most of the shopping because i can’t walk that far without becoming really short of breath, and almost collapsing with weakness. And he doesn’t complain about what i don’t do, since he knows that if i am able to clean, then i will.
Jerimy, I live about 2 hours north of Ann Arbor, in rural central michigan, about 20 minutes from Central Michigan University. I plan on asking my doc to send me down your way after i have the baby. I was very happy with the treatment my son received at U of M last year, after almost dying from a rare illness that had him laid up for 6 months.
I hope you are doing well and im thankful for your dedication to helping others. It sounds like you have a full plate yourself! Take care!
AnonymousJune 5, 2008 at 10:17 pm
Yeah, Jerimy, I’ll do that! I’m not sure if my doc will send me down there, but if he does, then i’ll get in touch with you! It would be the end of the summer, if at all. I will feel bad asking my doc to send me to someone else, but after seeing the difference in the care my son received, i might feel much more comfortable getting their opinion. Don’t get me wrong, I have faith in the doctors and nurses (my coworkers) up here, but we just don’t have what U of M has. They saved my sons life.
AnonymousJune 18, 2008 at 10:46 pm
Hi, I have not understood why they would delay testing you. An EMG would not hurt the baby. A spinal tap should not hurt the baby, it is basically the same as an epidural–it definitely would be harder for you to curl up into a ball!! so someone good would need to do it, but that can happen with planning. IV IgG can be given to mothers with limited effect on infants–we do it for maternal ITP where the platelets are low for delivery and the baby is at risk of bleeding due to low platelet due to destruction of the babies by mom’s antibody crossing the placenta.
I agree with others–go to a bigger place like the U of Michigan or Ann Arbor–Jerimy might help you find someone good in Michigan.
It seems to me that a lot of your stress (as, unfortunately, is the case for many of us), is due to not really knowing what you have, have you can do about it, and what the future might hold for you regarding what you can do as a mother of three, nurse, wife, and person.
WithHope for cure of these diseases
GBS 3/07 (per neurologist–maybe GBS, maybe not; maybe CIDP, maybe not, maybe MS, maybe not…) Someday I hope to get a label also. Much of my tests were not supportive of GBS, just the clinical presentation is and EMGs are abnormal so I have been stated to be a variant of GBS or Gullain-Barre-oid as he says….
AnonymousJune 19, 2008 at 11:58 am
I was reading and noticed that you said your Dr wanted to give you an epidural?
When I delivered my son, they didn’t want me to have an epidural because of the fear that it would cause me to get worse (I was in the recovery phase at this point).
If I were you, I would talk with your Neuro about this to make sure they agree.
I think they were saying this to me because I was still considered GBS. I am hoping with my next child, I will be able to have an epidural as I see many woman have gone on to do this.
Here is an article I found interesting …
Good luck and please keep me posted as to how this turns out.
AnonymousJune 21, 2008 at 3:57 am
ive talked to my neuro about the epidural and he didnt have anything to say about it. and now he is saying for some crazy reason that he has intention of testing me for gbs after the baby comes. all this time hes said he thinks it is gbs, and now he says i have absolutely no symptoms of gbs. im confused.
ive wondered myself, about the epidural, but so far, they all seem to think it is okay. i also have a lot of back problems, and ive heard women complain of chronic back pain after epidurals. i talked to my obgyn about that and he wasnt concerned. im hoping to see a new neuro at u of m before the baby, but im not sure that will happen. if it does, then i will ask him about the epidural issue, too.
thanks for your concern!
AnonymousJune 21, 2008 at 4:22 pm
Need to put my 2cents in. With my 1st child I was given 3 epis in a 5 hour span, it almost killed me, it paralyzed my diaphram and I was blue before my hubby noticed. This was before my gbs/cidp paralysis started-1st child in 93, gbs/cidp 05. For my 2nd child I was induced because he was over a month late. Was a guinea pig for a new med for inducing, had different outcomes than the drs were told. After they inserted the meds they said I had about 4 to 6 hours before the magic hour. Not! 20 mins later I was telling the nurse to get the dr in there, he wasn’t going to wait no 4 hours-I gave birth to a healthy boy who hasn’t slowed down ever since. No epi no nothing, just 2 pushes and pop there he was. I was up and walking in no pain in 30 mins. All the Dr could say was he was sorry there weren’t any anesthes people available—no problem, it went faster and much less pain then my first child had. I would def check with the dr and anest prior to the birth. Take Care.
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