New to this group :-)
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October 29, 2007 at 10:01 pm
My name is Colleen and I was diagnosed with GBS Sept. 6th 2007. I am 41 and an Early Childhood Special Education Teacher for students with Autism Spectrum Disorders. I spent 5 weeks in the hospital and am currently doing outpatient rehab 3 days a week. I received my GBS diagnosis 24 hours after admission and started IVIG treatments on 9/7 for 5 days. The treatment did not work and after 4 days in inpatient rehab I had a series of seizures (related to depleted sodium levels from medications) and spent the next 7 days in ICU. I never needed a ventilator( the doctors did vital capacity checks three times a day for 4 weeks). I began Plasmapharesis treatments while in ICU and had a total of 5 treatments over 10 days. I spent 14 days in inpatient rehab, learning how to walk, write, and develop my fine motor dexterity again.
The effects I am currently dealing with include numbness in the left hand ring finger and middle finger, tips of the right hand same fingers, toes of both feet tingling, and rapid fatiguing in the late afternoons.
I am going to be going back to work partial days beginning November 1st.I found this site while I was still in the hospital and it has helped answer lots of questions and encouraged me me to ask LOTS and LOTS of questions of my doctors.
Thank you 🙂
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October 30, 2007 at 12:02 am
Hi Teach, Welcome to The Family. Wow, returning to work soo soon? Please be careful and get plenty of rest. Feel free to ask as many questions as you have or just vent when you need to. Take Care.
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October 30, 2007 at 2:54 am
Welcome to the forums, Teach….Your GBS episode sounds similar to mine (Sept. 3, 2004), but I did not undergo Plasmapherisis. The IVIG worked for me, so they told me :).
I agree with Cheryl……………I think you might be trying to return to work way too soon…………….My neurologist didn’t let me go back for 5 months!!!!
Be Careful 😉Per
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October 30, 2007 at 7:43 am
Good morning.
I got my GBS from a flu shot. You have found your other family here. We say we know more than 60% of the doctors. and in most cases we are right.I agree with the others. do not try to return to work too soon. GBS at times has a few hidden suprises for us. We say GBS also stands for GETTING BETTER SLOWLEY.Go slow and above all listen to your body and rest.You are in my prayers (Steve) -
October 30, 2007 at 7:50 am
Hi Colleen and welcome to the family/website. Glad that you found us and glad to hear that you are doing better.
Jerimy
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October 30, 2007 at 9:45 am
Welcome teacher. I think you will find this family a good source of information and love for whatever you may be going through. I was dxed in April 2007 and I do not plan to go back to work ever. Course I am a ole sot and really don’t want to if I could. Still have alot of strengh issues and still have trouble dragging my feet when I walk. Again welcome to the family. 🙂
Joseph
GBS april 2007
IVig 2 treatments -
October 31, 2007 at 12:59 am
Hi Teach, Welcome to the neighborhood and don’t overwork yourself. IMO it is one of the worse things you can do. Your body needs time to heal up.
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October 31, 2007 at 8:27 pm
Ditto everyone else…take it easy! It does not help to push yourself too much this soon. Glad you found us. My daughter and daughter-in-law are both teachers, so I have a special appreciation for what you do!! Best wishes for a speedy recovery from Iowa!
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October 31, 2007 at 9:47 pm
Hi everyone. My name is Dave and I am from Iowa. I am just over a year post diagnosis with GBS and had a question. I am scheduled to have surgery for a deviated septum in two days and am concerned that it could trigger another episode. Anyone have any experience or knowledge regarding this? Please let me know what you thing and any and all info would be appreciated.
Sincerely,
Dave T -
November 1, 2007 at 12:34 am
Teacher…,holding my hand up lol , May I ask you a question ? Did you have any kind of illness or food poision leading up to you GBS ? I am assuming it was too early for you to take the flu shot, so I am leaveing that out as a cause for your case. I was just wondering if it was something I mentioned above to give you your case , or what ?
You really be carful about going back to work too soon, or you could end up back in the hospital again; and it may be alot worse for you the next time.
Glad to know you and look forward to hearing from you again with better news.
God bless,
Drummer
Dave, start a thread and stateing the same question there, and you will get replys quicker; as some people do not read all the post, but do look at a lot of the threads and read the ones that interest them…well, that is the way I do it anyway. There have been plenty of threads with people with GBS and who have had surgery and most of them with no ill effects from the surgery on the GBS.If surgery is something that really needs to be done…well, what choice do you have ? Take care and get back with us here Dave and let us know what happens, and am hopeing the best for you. -
November 1, 2007 at 9:39 am
dave,
pin a note on yourself saying you had gbs. it is especially important that the gas doc know this, but all must know. take care. be well.
gene gbs 8-99
in numbers there is strength -
November 1, 2007 at 7:07 pm
The doctors are saying that I had an infection. I really don’t know because I had been suffering from a eustatian tube dysfunction and the ENT changed my Allergy medications 2 weeks before I was hospitalized. I also had a bad stomach virus the last week of july that really knocked me down for 5 days.
It all started while I was on vacation with my family in Colorado. I had altitude sickness. I live at sea level( about 3 hours from New orleans) and went to 10,000-12,000 feet in the rocky mountains. I had lots of fatigue and a nasty head ache for the first three days. THe night before we left colorado, I had achy knee and ankle joints, but flew home with no problems. The next night my legs were really heavy feeling. I called my doctor tuesday and could not get in until wednesday morning. I went to the ER and I had low potassium level so I was given potassium pills and told to follow up with my dr. within the next week. I kept the appointment and was immediately referred to a neurologist by 10:30 . I had nerve conduction test, EMG, and a few other neuroligy tests done, I was admitted to the hospital by 2:00. I had an MRI of my lower back and spine and then the next morning, I had a spinal tap. IVIG was started by 4:00pm and it ran for the next 5 days. I got worse instead of better. I spent 4 days doing rehab and was sent to ICU, after having a series of seizures(ended up being not related to GBS) While in ICU I started plasmapherisis and started seeing improvement within 3 days.
I went to the neurologist yesterday and he told me that I was the first case he has seen that IVIG did not work. I currently have some foot dragging of my left foot and numbness in 3 of my left fingers.
I don’t take flu shots or pnumonia shots anyways…. mainly because of the stuff in them and 3 of my students have autism spectrum disorders that showed up after receiving the MMR vaccine when they were toddlers.
Colleen
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November 1, 2007 at 8:25 pm
My hat if off to you, Teacher. I grew up in north central Louisiana (Ruston) likely not too far from where you are.
Sometimes Guillain Barre happens after a diarrheal illness due to Campylobacter jejuni. If your stomach flu was of that nature, you might want to ask about it.
Viral illnesses have a risk of causing an exacerbation of the GBS symptoms due to non-specific flair of the immune system in general likely. This is what people are cautioning you about in working with children closely. Maybe keep lots of kleenex close by and hand santitizer and just let everyone know that you are trying to stay healthy to keep working. I also work with children and I could not imagine life not doing so. My neurologist said that it was fine to be in normal situations at work, but I think he really did not think about how “non-normal” it is to work with young children who sneeze and cough directly on you and catch lots of colds. I did not enlighten him because I was going back to work.
One other tiny suggestion. I found that carrying papers and books were really tiring. I got a rolley backpack and it makes a lot of difference.
Keep helping the children!
With hope for cure of these diseases. -
November 1, 2007 at 10:48 pm
Teacher, you had a number things that could have started the immuine system to go wacky. It is so easy to catch something from the children while even doing your best to sanitize everything, but there is always something that seems to catch up with us. I try so hard to stay germ free, but I still get something every winter. No flu shot for me either. I suppose all we can do is to try our best and pray alot. Will keep you in my prayers for sure until some more time passes for you.
God bless,
Drummer -
November 1, 2007 at 11:02 pm
Thanks Drummer. I will keep you posted. I appreciate it.
Dave -
November 2, 2007 at 12:02 am
Colleen,
One thing to remember is that IVIg doesnt stop the progression of GBS, It still runs its course to the worst point after the IVIg, as in your case you continued to deteriorate. Many of us used to be under that misconception, however Dr. Cornblath clarified that after I questioned him at a conference:o . Generally IVIg is considered successfull if the patient starts the recovery process relatively soon after the “worst point” has been reached. Not sure how they gage that, but it has been suggested that if 2 weeks after the first infusion no improvement has been seen then a second IVIg course be given.
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November 6, 2007 at 6:01 pm
Hi and welcome, take good care of your self, your body need lot of rest like others have told you, you heal your self with resting. But keep up exercises,
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