Babies and damage to the body because of GBS
AnonymousMay 13, 2006 at 6:58 pm
I am hesitant to write this thread. I am half expecting some members to jump down my throat and ask me how I can believe this hogwash, and how a neurologist could say something like this. But Im posting this, wondering if someone may have heard something similar. Many of you know that i am extremely wary of what doctors say.
I was on the phone to my mom in South Africa this morning and she told me that when she was at her physical therapy appointment, her therapist, who had GBS, just happened to mention to her that her neurologist told her she should NOT have any more children. She didnt go in to great detail, but it was something about what it could possibly do to the body because of the GBS. My mom had apparently told my dad a few weeks ago, that it seems to be after the birth of my son 4 years ago (I have a 10 year gap between him and my daughter) that my health has become progressively worse. Before he was born, i had fatigue, you know, more so than the average person. After his birth the fatigue rules my life with an iron hand. Most of you probably know the rest, but, just in case, I have the burning, cramping, pins and needles in both my hands and feet a lot of the time. Also, at times my legs, and not as often, arms feel extremely weak. I had an ‘episode’ April 05, when I basically collapsed, and really thought I was having another GBS “attack’.
I remember a new member ask last year if it was safe to have a baby. So many of us wrote in to say …… “Yes, go ahead, you will be fine. Look at us, our babies are fine, we are fine, blah blah”. I am starting to regret that throw away statement, because what happens if it really isnt alright. All i am is curious, I know a lot of you out there are fine after your children were born. I have silently been thinking whether the pregnancy may have done something to my body somehow, maybe because I was older.
I am also curious as to whether anyone else out there has possibly had the same experience?
AnonymousMay 13, 2006 at 10:04 pm
I know many have had babies without ill effects, that is exactly what I said in my post. My first child, born 7 years after GBS, didnt seem to effect me at all. The question I had was whether anyone else had heard what I was told today, and possibly, whether being preggie later on in life, possibly with a gbs background, had had any effect on anyone. Im am certainly NOT blaming GBS on the “possible” effects my mom, or I, see after my son was born, all I was trying to find out was if anyone possibly had a similar experience.
AnonymousMay 13, 2006 at 10:15 pm
I do know from working with Drs for a long time that getting pregnant with
MS can exacabate(Sp?) MS which we all know is a neurological illness, there could be something to what you are saying. I had 1 MS patient when I worked for the OB/GYN and it did make her illness worse. But then she went off to her Neuro and I didn’t work there anymore, so I don’t know how she is doing.
So in my opinion it probably can have some effect on a GBS/CIDP body.
Have you asked your neuro this question?
AnonymousMay 13, 2006 at 10:48 pm
I find your post thought provoking. I for one do not think your posting is hogwash. We all have our own opinions and rememebr, GBS is not fully understood.
I had my child at age 36. Six weeks later I contracted GBS. In some ways, the problem of prgnancy did not arise for me. By the time I was mostly over GBS, I was close to my forties and would not want to have considered having another child by then if only because of the risks involved because of my age.
I have read of others who have become pregnant following GBS and, whilst their symptoms increased, the outcome was fine – in the end.
As rare as it is, I do suspect a connection between GBS and pregnancy.
I am not a great believer in what we “should” or “should not” do but I think it wise to weight up the possible risks.
I don’t believe there is such a thing as it being ‘safe’ to have a baby. Thre are risks involved no matter who you are.
I would agree that after GBS some women are probably just fine following the birth. I would also agree that some women are not. Whilst I am not looking to get pregnant, I can try to understand those of us who yearn to do so.
I personally would suspect (and I have no medical background whatsoever) that your pregnancy had an effect. I thnk mine did.
Now, I don’t mean this to you personally, but the easy danger lies in blaming the child that is born. I know that I have been careful in telling my Sarah about GBS, in case she gets the completely wrong idea. My getting GBS has nothing to do with her. It might be connnected with my being pregnant – but I did not know that I was pregnant with her. It might, as I suspect, be connected to giving birth, but that I happened to be giving birith to her, is irrelevant.
AnonymousMay 14, 2006 at 1:16 am
A member of our local GBS support group gave a talk on pregnancy and GBS or CIDP. She trains physician’s assistants at Clark Community College in Vancouver Washington. Her husband is a pediatric physician. She gave an exhaustive discussion on all research done on GBS, CIDP, and pregnancy. The only negative thing I heard is that in one or two cases, out of thousands and thousands of pregnancies, it was thought that pregnancy may have been a factor in a GBS relapse. There wasn’t any proof that the pregnancy actually caused the relapse, just like there wasn’t any proof that the relapse wouldn’t have occured if there wasn’t a pregnancy. I can’t see enough evidence to justify going around and telling people whether they should or shouldn’t have children.
We do know that some people get GBS the first time while pregnant. Does that mean nobody should ever procreate? Of course not. That is just ridiculous. I think doctors have a responsibility to ensure that the information they impart to their patients should be based on sound scientific principles. If they don’t, then they are little better than a shaman, faith healer, or snake oil saleman. I just don’t see the medical research supporting the doctor’s statement.
AnonymousMay 14, 2006 at 1:29 am
Another issue all-together is having children when you are a little older. My wife had my youngest son, Miles when she was 39 and my youngest daughter when she was 41. It is true that you have less energy when you are an older parent, but all in all, I really believe that older parents have a whole lot going for them. In the end you have less energy, but less energy is required. Older parents are wiser, less likely to make silly parenting mistakes as a result of peer pressure, more financialy secure, more likely to know what is truly important in life, and they have enough life experience under their belts to have the detachment required to see the likely results of interactions with the child. Having had 2 children in my late 20’s and two children when I was older, I really think my two youngest children are a lot better off than their older siblings. Or maybe I just read too much into your questions.
AnonymousMay 14, 2006 at 2:08 am
I have a baby when I was 26. I had GBS when I was 18. Somebody told me that I will not live long. I am now 38. My boy is as tall as me, healthy, normal teen. Yes, I am still working, in fact two jobs (one full time, one per diem-occasional job). Physically, I am tired and fatigued after an 8 hour shift. At times I have neuropathic pain on my legs and hands. Am I taking medication?–NO. I live with that pain–it’s me who has the only power to control it. So much so when I have this involuntary switching of my lower extremities when I was pregnant. Did I take medications for it? NO, it was not seizures. it was part of me and my past. Of course as other pregnant women, I was taking prenatal vitamins. Did I chose to be pregnant? Yes. It was me and my faith.
AnonymousMay 14, 2006 at 8:11 am
I had GBS when I was 15 for about 23 years ago. It was not a severe one but I have had residuals as fatigue and pain after that.
When I was 29 a had my first child. It was a normal pregnancy and everything went well.
When I was 34 I was pregnant again. This time was quite different as I had a very bad pregnancy – I was practically sitting in a sofa for 9 months unable to do anything at all. None of the doctors found out why. After the birth I recovered a little but for the last 4 years I have been struggled with severe fatigue, a lot of pain and other rare stuff including a few colapses. I have had a really hard time and a lot of examinations.
I still don’t have a diagnos but the neurologist told me I haven’t got any neurological desease and that he don’t now what I’m suffering of and that he can’t say if it is residuals from GBS. A GBS specialist told me that the investigations the other neurologist had made on me should be sufficient to give relevant answers if I was suffering from nerve damages as Post polio syndrome. He also told me that there were no scientific litterature about Post GBS and that he hasn’t studied the fenomena and that it was a field to be examined. The few GBS persons that he has had as patients hasn’t developed this (yet). He suggested that maybe I also could be suffering of Fibromyalgia but my GP says I’m not.
Anyway today I’m learning to live with the extreme fatigue and pain. I haven’t been working for some years. I don’t know how it will be in the future. It is quite hard to be a weak and fatigue mother in “corps” but they really give me so much love and joy in spirit. It is due to them and my husband that I’m struggeling along in this life.
AnonymousMay 14, 2006 at 8:44 am
I can’t answer what you asked, but I can say what I have heard and read. My cousin’s wife has MS and when she was pregnant, I sent her an article I found that said having a baby was good for the body (don’t you wish we’d learn to keep copies). Also, the doctor who was a speaker at one of the new york meetings said not to be afraid of being pregnant, it was important to move forward with your life.
Just watch the responses, that will tell you whether what you said is hogwash.
AnonymousMay 14, 2006 at 11:48 pm
In my opinion, personal experience and research, pregnancy after GBS does not put you at any greater health risk. My pregnancies were normal, post-partums were normal.
In fact, pregnancy helped me to take better care of myself, my diet, rest, etc. Pregnancy also improved my balance.
If you read any info about Post Polio Syndrome, it makes quite a bit of sense to me that there would be such a thing as Post GBS Syndrome.
May 15, 2006 at 5:42 am
I’m glad you have brought this subject up, and its certainly is not hogwash.
I’ll tell you what happened to me.
Had GBS in 1968 when I was 10, in hospital for just over a year, took 3 years to walk, but remember very little was done then, and I had no treatment.
In 2001 I had flu, the type that puts you in bed for over a week. I started to have lots of GBS symptoms, weakness, burning, tingling, numbness and terrible fatigue. My doctor had no idea what was wrong, as I could still walk.
My husband took me in the car many miles to see a neurologist. He performed loads of tests and confirmed I was having a slight relapse.
When he read my notes he was amazed to find that I had had 4 children. He questioned me about each pregnancy, asking ” did you feel any different etc” I replied that I was fine, had no problems, but did have minor things happening like, my little fingers going numb, and burning on my back. Remember once when my husband was on night duty, and this being my first pregnancy he wanted me to stay the night with his parents. During the evening whilst watching tv I became aware that my back had suddenly started burning. Within minutes it was on fire causing me quite a bit of distress. My mother-in-law phoned the doctor, who came out and examined me. He had no idea what was wrong and told me to have a cool bath. The next morning I was fine. I have to confess I did have little episodes like this during my other 3 pregnancies.
The neurologist told me that I was very lucky as a pregnancy COULD of brought on a relapse. Paul and I discussed this on the way home and I told him that even if I knew this at the time, I would still of taken the chance. You have to be realistic about this, as we know from these boards, so many gbser’s go onto have trouble free pregnancies, and healthy babies. Everything in life is a risk, and if you worried about everything you would not get out nof bed in the mornings.
By the way, he went onto saying he believed there is a “post gbs syndrome” that can effect people who had gbs many years ago, and suddenly find themselves having problems. I for one believe this could be the case, but that’s another story…………..
Hope this helps
AnonymousMay 15, 2006 at 9:36 am
Lee said …
[QUOTE]Another issue all-together is having children when you are a little older. My wife had my youngest son, Miles when she was 39 and my youngest daughter when she was 41. It is true that you have less energy when you are an older parent, but all in all, I really believe that older parents have a whole lot going for them. In the end you have less energy, but less energy is required. Older parents are wiser, less likely to make silly parenting mistakes as a result of peer pressure, more financialy secure, more likely to know what is truly important in life, and they have enough life experience under their belts to have the detachment required to see the likely results of interactions with the child. Having had 2 children in my late 20’s and two children when I was older, I really think my two youngest children are a lot better off than their older siblings. Or maybe I just read too much into your questions.
Maybe you are reading too much into my questions, BUT, I have to agree with you about older parents. With our our youngest, we are definitely wiser, more patient and all the rest you mentioned.
AnonymousMay 15, 2006 at 9:58 am
I am so sorry you are having such a hard time of it. I have been told that often patients with post GBS are misdiagnosed with fibromyalgia. I wish you all the best, your story is quite similar to mine. (I’m sure I remember you from the old forum)
Yes, I think thats what the neurologist was telling this lady my mom was speaking about. He thought that pregnancy COULD possibly have an adverse effect on the body AFTER gbs. From speaking to many others on the forum,(which I know you have done to) I believe that many of us suffer from post gbs syndrom, just wish we could take our “collective findings” and show it to some doctors who have never treated or seen cases of gbs, and who are sceptical. But as you say, thats another story ……….. How about starting a new thread of post gbs?
I just wanted to clarify something, both my pregancies were healthy, happy ones, and both my children are happy children. If I didnt have children, and i was younger, I wouldnt hesitate to become pregnant. GBS (and many other illnesses for that matter) is such a strange, unexplained illness, and i think its interesting to ask questions, especially if it has effected others.
AnonymousMay 16, 2006 at 1:58 pm
Ali, I remember you to. But I didn’t know when I was reading that your profile was so similar to me; you were born in the same year as me, had GBS 1985, have a child of 4 and that your Post GBS Syndrome problems started there! I really feel that we should discuss Post GBS Syndrome more thoroughly. I think that a Post GBS Syndrome thread is a great idea.
To achieve more energy has been one of my headprojects for a while ( as I can’t do much without it…). I have for some time been doing light ayurveda things when I’m able to do it…; yoga, meditation, sesamoil-massage and being thinking a lot of the food I eat. I feel better in spirit and a bit more comfortable – but I’m still extremely tired and the pain is also there. I’m better in my IBS to. I’m recently taking this home made yogurt with 5 different probiotika, before I took the pills which didn’t have an effect on me. I have been told that 80% of the immunitysystem are in the colons and if they don’t work the body can’t intake the nutrition it needs. So to heal them is probably a good start! I think it really matters what you eat even if its impossible to eat correctly all the time… I have being reading some nutrition and holistic books – it’s quite hard to know what your for example vitamine or mineral lack is just reading syndromes! Anyway I have got the time to investigate – time is one thing I seem to have a lot of…
Thank you for your post for some time ago…I was so desperate back then, I needed a answer for everything. After have been ill in an uncontrolled way for so many years – and have been quite down for a while – I have for some months at least peace in my mind (if i’m not having one of the heavier attacks). I’m still suffering from so called Post GBS syndrome and I have not yet the correct medication but I have in a way accepted my destiny. I hope you’re as well as you can be. Have you had any changes lately?
Anneli 🙂 🙂 🙂
( I see that there exists a spell checking now – what a shame I can’t download one because of the firewalls – I must ask someone how to fix it! 😉 )
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