Hi, everyone! New here.
AnonymousApril 30, 2007 at 8:43 pm
Greetings to all. I’m new to the board and wanted to introduce myself.
My name is Suzanne, and I’m a 31-year-old stay-at-home-mom of two young children (14 months and 3 years). I’m just beginning my recovery from GBS, which began to afflict me in March of this year. I just came home from acute rehab last week and have begun outpatient PT.
I had a heck of a time being diagnosed (was told panic attacks, then MS, then conversion disorder, then one doc actually said he thought I was “crazy”, then FINALLY a new neuro took me seriously and dx me with Guillain-Barre). Because my initial LP was done only a week into symptom onset, there were no abnormal proteins there yet, and that really complicated the diagnostic process in the beginning.
I was honestly in so much pain from the neuropathy that before being diagnosed, I wanted to die. It’s hard for me to admit because I have so much to live for and under normal circumstances would never even remotely consider such a thing, but at my lowest point, I honestly contemplated killing myself because I couldn’t stand spending another moment in my body. And knowing that the doctors weren’t taking me seriously, I felt that I had nowhere to turn for help. Thank God I didn’t listen to that urge ultimately and tried one more time to get help with a different doctor. If he hadn’t helped me, I shudder to think what might have happened to me, and to the rest of my family. But I did finally get taken seriously, and the neuro who helped me had me hospitalized immediately and got me all the help I needed. I have never felt such relief in all of my life, just to know that I was helped, and [I]believed[/I]. It’s sad, but true. And I know a lot of you know exactly what I’m talking about.
Thankfully, I began the IVIg therapy in enough time and responded very well to it. Within 48 hours of beginning treatment, my condition stabilized and I didn’t get any worse from that point. My lung capacity was extremely low, but I never went on the vent. I temporarily lost the use of my legs and had numbness throughout my entire body, but I never reached full paralysis. My reflexes also never fully disappeared; they simply got very low. Honestly, this disease is so individualized that I can see how it’s quite a bear to diagnose. But I’ve never been so scared in all of my life, especially as I learned more about what I actually had. I didn’t know how bad it would get, and trying to put myself into a mindset where I would be okay with whatever happened was intense, emotional, and sobering. Though the worst case scenario never happened to me, for a short while I had to live my life as if it would. That feeling is indescribable, and my heart goes out to all of you who did indeed walk that path. You have all of my love and respect, more than I could ever put into words.
Anyway, now I am well into my recovery. At this point, I am able to walk with a cane, though I still have residual tingling and numbness, extreme fatigue, stiff joints, and some odd issues like major heartburn, high sensitivity in the non-numb parts of my body, feeling cold a lot of the time, and problems remembering things. It’s still early, though, so I have no idea how much of this will get better in time and how much might stick around long-term.
I look forward to being an active member of this board, as I’m truly grateful that this community exists. I feel so isolated right now, and though many people care about me and about what I’ve been through, I don’t feel like they really understand. This whole experience feels like a big bad dream, and my life now is just wholely different, somewhat confusing, and definitely overwhelming. Having a group to share these emotions with makes it a bit more bearable, and less scary.
So… Hi, everyone! 🙂
AnonymousApril 30, 2007 at 9:40 pm
Welcome to our family -people you have never met but will understand you better than your friends. I especially liked your honesty about wanting to give up. You don’t see that written as much here. I often wonder how many of us have gone through that. People say to me that this experience will make me stronger. I don’t think so. I think it has damaged me both physicaly, emotionally, and mentally. It took away my body, my hair, and my friends. I feel empty. I wonder if this has to do with age or lack of any support system. I was in my 30’s when I got it the first time and am now in my 50’s.
I get angry when people simply say,”Well, go to see a doctor.” It sounds so simple but you have to find a good one. Look what you went through. And there isn’t a magic bullet for this horrible dis-ease.
I am glad that you are on the road to recovery.
AnonymousApril 30, 2007 at 10:19 pm
Glad to hear that your recovery is going well for you. Just remember rest, rest, rest! You have found a wonderful support system here and we are all too familiar with what you are experiencing. There will never be anyone that can understand the frustrations of this illness unless they experience it themselves. That is what makes this group so comforting. Any time you need advice, it’s here and any time you need to vent we are all hear for you. Once again, welcome to the family!
Blessings to you,
AnonymousApril 30, 2007 at 11:32 pm
Welcome Suzanne: I am glad you are going to join our family and to contribute to all of us. I think many of us have thought of giving up, especially in the beginning phase, or when the pain and residuals get overwhelming. But mostly I think giving up comes from not having enough support or people who can understand what it is like to go through this trauma. You have come to the right place for that. You don’t say if you are on any medications, but for many neurontin is the best for residual nerve pain and tingling. Jeff
AnonymousMay 1, 2007 at 2:15 am
Hi Suzanne, Welcome to The Family! i’m still getting that psych stuff from the hospitals i have been in and the neuros, my pcp is dx me with cidp now. he understands what i’m going through and he has been with me for over 18 years and knows i’m not that good with my mind-good enough to screw up my numbers on tests and so forth, that would be my next trick!:D where abouts are you in this bucknut state we live in? i’m in northwest, just outside of Toledo. Maybe i should go see your neuro, it might be enough to kick start mine into actually looking into why i relapse and remit.:rolleyes: (opps i forgot, its just my mind hiccupping that makes me go paralyzed) Sorry for the sarcascim(sp) guys, just one of those nights.
glad to hear your getting around pretty good, i’m sure your little ones are your best pt/ot:D please don’t over do it, get mom naps as often as you can. take care.:)
AnonymousMay 1, 2007 at 6:14 am
It is great that you are able to join us so soon after suffering GBS. How did you cope being away from your children? I was in hospital in another town for 5 weeks and it was 3 weeks before I saw my 3 kids aged 8, 4 and 3, I had never been away from them before. I think that is one of the hardest things to cope with. As a mum you are used to looking after everyone else and suddenly you cant even look after yourself.
I had days when the road ahead seemed so long and daunting that i didnt know if i had the strength to go on. I am so grateful that I didnt give up as i went on to make an excellent recovery by GBS standards. I dont know if anyone who suffers GBS makes it through without a few dark moments.
I look forward to hearing from you on the boards.
AnonymousMay 1, 2007 at 7:58 am
Thank you so much, everyone, for the warm welcome. 🙂
Yolande, being away from my children was certainly one of the most difficult parts of this for me. Like you, I had never spent any significant time away from my children (not more than an hour or two, ever), so it was very painful to be ripped away from them so suddenly. I left the house for a doctor’s appointment and then ended up not coming home for weeks!
Also, when the GBS started, I was also still nursing my son, and neither of us was ready to give up that relationship. So I was forced to wean him abruptly, which was hard on both of us, both emotionally and physically. I had to manage the pain of engorgement on top of all the neurological problems.
Luckily, my husband quickly got FMLA leave from work, so he was able to stay home with the children while I was in the hospital. However, he wasn’t used to doing everything for them and had quite a harsh learning curve at first. But now that I’m home, it’s nice that he knows exactly what to do for them when, so I’m able to rest a bit while he cares for them. Before GBS, I was the one doing most things for the children all the time, even with my husband at home. I think that this experience will transform us into much more equal partners where childcare is concerned. So, I suppose that’s a silver lining.
AnonymousMay 1, 2007 at 1:51 pm
Welcome to your new cyber family! I love your posts – we usually have to pry information out of newcomers until they get used to us, and I am usually real forward and nosey. :p
Now that you are over the initial shock and trauma of what you have been through, get prepared for a bit of a different future (probably – everyone is different). It seems there are so many new people that are always wanting to know WHEN will they be like their old selves. There is no answer to that. Healing seems to take weeks instead of days. And as the years go by (oh my, 10 already), you get a little used to this whole change in life.
The most popular advice I give is to rest, rest and get more rest. When your husband goes back to work and you are home alone with the kids, take it real easy and pace yourself! Oh, and on that bad heartburn, I got it too from Neurontin – have been taking Prilosec for many years now.
I love your username and avatar!!! I’m a big cat person – I have a TiGGer and used to have his pic as my avatar and may put him back up instead of my face.
Glad to have you here and look forward to your posts 😀
AnonymousMay 1, 2007 at 7:59 pm
Suzanne, good to see you found the joint- it’s a great resource for knowledge concerning your condition. Lots of empathy here, too. Yes, less scary when you know others are on the same quest of sorts. Hey, I’d bet there are 35,000 or so alive today in the USA who have been down this road. Consider it as if we are all on a safari where, when the animals make scary noises, you can huddle here and we can draw the wagons into a circle!
/me looks for more firewood
AnonymousMay 1, 2007 at 10:39 pm
Hi! I too was nursing a 12 month old when I had GBS eight years ago… my friend drove me to a GP appointment, both of us with our babies with us, and the GP sent me straight to emergency. I nursed my baby in the car and then my friend took her home, while I walked into Emergency and stayed a week. My daughter had never gone to sleep at night before that without being nursed by me (and she hated bottles).
I still could use my arms throughout the time I was in the hospital – so I asked for a pump so that I could go back to nursing later. BOY – did I get flack from so many people in the hospital for that!! The neurologist kept telling me I couldn’t nurse again because of the meds used for the MRI, I think – but the radiologist said everything would be fine after 3 days… Then when the nurses found out that my “baby” was actually 12 months old, they wouldn’t help me with issues around using the pump because THEY thought I shouldn’t be nursing any more… All that bad attitude stuff just added to the frustration and trauma of the whole thing.
I could be projecting my (old, now) frustrations onto your situation, and of course there are more vital things to take care of first when you’re dealing with an acute situation, and if you need to be on meds ongoing, going back to nursing is probably out of the question. But it boggles my mind that they don’t provide better support for nursing moms in the hospital (which if you suffered with being engorged, it sounds to me like you weren’t getting much support).
Sorry to rant a little, I guess that button is still a little hot even after all these years.
AnonymousMay 1, 2007 at 11:39 pm
My heart goes out to all the Mommy’s . I had just weaned my baby when I got GBS in Jan. They would not let me see either children for 2 weeks because I also carried a tentative DX of menigitis. It was so sad when I thought they felt abandoned. (they were with grandparents- so getting spoiled)but not like being with us. My husband rarely left me so they didn’t see either of us. I’m suprised about the lack of help with the pump. Our hospital has 2 lactation specialist. I thought at least 2 times I was going to die and all I could think about is my children not having a mother. I fought hard and I am so blessed to be recovering. Don’t feel alone-we all understand. It took them 5 days to DX me and I told them the DX when I went and the 1st neurologist just blew me off(apparently my medical degree didn’t bear any weight). Soooo scary to not be believed and to hurt and to know something is terribly wrong and nobody is doing anything.I’m am so sorry and ashamed of my profession that you had to suffer so long. If you just want to talk or have any questions just send to my private email. I only check in about once a week now but I will find it. My heart goes out to you. Dr. Shawn
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