New member GBS-dx 11-2007 – Ohio
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March 25, 2008 at 4:40 pm
Hi to all.
I have been reading the forums for a few weeks. Thinking back, I now know that I had symptons through the summer of 2007. It took weeks to be dx, of which I was not aware of most of It. During that time I was given steroids and given drugs in the IV to keep me knocked out. They did 19 different test before they got a dx. I was in and out of ICU and had horrible nightmares when I was asleep. When I was awake, my mind played nightmare tricks on me. Everyone moved in slow motion I just knew the staff was doing bad things in the basement and were out to kill me. I would start saying NO,NO,NO, every time I saw a Dr. come into my room, afraid of another test they would do. After begging my husband to make them stop giving me drugs, ( he did tell them and the drugs eased up). A doctor had me transfered to a rehab unit in another hospital. They stopped the steroids did not keep me druged up and my mind seemed to clear out of the fog I had been in for weeks.They put me on lyrica and started plasmaphersis, a total of 15 treatments. They started rehab immediately and 5 weeks later, on Christmas Eve I went home in a wheel chair. I got home pt 5 weeks and out patient pt started the end of Feb. and I am still in it. I can use a walker and learning to use a cane. My husband says I am a good wall walker at home, holding on to the walls when I walk. It is amazing what most of you have been through it has been a nightmare for all of us and our care givers. Sorry this is so long. I don’t have a question but would like to make a statement to all of you in this forum and other forums. Thank you all for being there these last few weeks, I feel like I am not alone any more.
Shirley
Faith,Prayer,Patience and Baby Steps
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March 25, 2008 at 8:18 pm
Welcome Shirley,
Glad to hear the road to recovery is being traveled! That is by no means a long post, you should see some of the posts I make!!! People on here are so kind and do not seem to mind. Good luck to you!
Dawn Kevies mom -
March 26, 2008 at 10:09 am
hi shirley & welcome,
do not ever go back to the orig hosp nor the docs. they did you wrong in many ways. the most concrete is that steroids are counterproductive to gbs. take care. be well. gene
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March 26, 2008 at 2:47 pm
Dawn Kevies Mom,
Thank you for your welcome. I feel that I know a lot of you from reading the forums these last few weeks. It has been a crooked road to recovery but it has straightened out some over that last couple of months.
Thank you for those kind words.
Shirley -
March 26, 2008 at 2:54 pm
Gene
My husband and family has instructions NEVER take me back to that hospital.
I am slowly improving. Thank you for your good advice to me.
Shirley -
March 26, 2008 at 8:01 pm
Hi Shirley,
Welcome to our site. Hope things go better for you. Remember there is almost always someone on here to answer questions and give support. I’m not sure where Yellow springs is but let me know if i can be of any help.Take care
Sherry Price
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March 27, 2008 at 7:13 am
shirley,
pls email or pm me the names of the bad docs & hosp. thx. take care. be well.
gene gbs 8-99
in numbers there is strength -
March 28, 2008 at 7:01 am
Hi Shirley, Welcome to The Family! Feel free to ask as many questions as You have or just vent when You need to.
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March 29, 2008 at 5:38 pm
Sherry,
Yellow Springs is close to Springfield and Dayton.
Thank you
Shirley -
March 29, 2008 at 5:39 pm
Cheryl,
Thank you
Shirley -
March 30, 2008 at 6:16 pm
If you are ever in the Toledo area, Shirley, let me know.:)
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March 30, 2008 at 7:54 pm
Cheryl,
Will do that and please do the same if you are in our area.
shirley -
March 31, 2008 at 6:02 pm
Shirley,
I live in Dayton, so if you need some support e-mail me and I will call you. Also, I have contact with a good neurologist.
Rocker AKA Matt
[email]rocker@woh.rr.com[/email] -
April 2, 2008 at 1:28 pm
Rocker
I will e-mail you if I ever need to. After a rough start with GBS for a few weeks, I was dx, then transfered to MVH acute rehab unit (being from Dayton, you probably know what MVH is). I had the best care for the next several weeks. I don’t remember much about my neurologist other than he dx me. I have an appt with him April 7, time will tell.
Thank you very much
Shirley
dx GBS-11-07 -
April 2, 2008 at 7:26 pm
Hi Shirley,
sorry it took so long for me to get back on here. I’ve had a terrible case of the flu and didn’t leave my bed for 8 days..wow. but glad to see others have responded. We’re not close to each other but I will be there if you need me. Glad to see Rocker is close by. Let me know if there is naything I can do for you.Take care
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April 28, 2008 at 6:25 pm
Shirley,
Dr, Alan Jacobs at MVH is an excellent neurologist… look him up! Keep in touch using this thread and please contact me if there is anything I can do to help. I love Yellow Springs and wish I could afford to live there!
Rocker
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April 29, 2008 at 10:29 am
Rocker,
Dr. Antony Jacobs, MD, at MVH is my rehab Dr. Dr. Alan Jacobs saw me while I was in MVH. I was also seen by a Dr. Jacobs at Good Sam and Dr. Goldstick. Dr. Goldstick is the one that finally dx’d me and had me transfered to MVH, I see him as an out patient.
We couldn’t afford to live in Yellow Springs either. We call it “nature village”. We live out by Youngs Dairy, been here 30 years.Shirley
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April 30, 2008 at 6:11 pm
Shirley.
It’s nice to meet you and welcome to our family.
Jerimy
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May 1, 2008 at 9:04 am
Thank you for the welcome to the family Jerimy. It is good to meet you. Everyone has been so nice.
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Shirley -
May 2, 2008 at 11:40 am
Shirley,
Welcome to the family.
I’m in Missouri, so I don’t know if I can be of any assistance as far as finding a “good doctor.”
I will state that during my hospitalization, my pulmonologist took a special interest in my case (he had treated many, MANY, MANY of cases of GBS in Egypt….80+). He basically overtook my care and instructed the neurologist what tests needed to be done, and what direction of care to take. Took time and listened to what I had to say.
At one point, I was extibated too early, and had to be re-intibated on an emergent basis….he came in that NIGHT and asked everyone else to leave, shutting the door. Then he explained what was happening and the direction of care we were going to take. He was not soft. He instructed that managed care was a direction that I could go, with a permanent vent, if improvement was not happening…..then he instructed what I needed to do to go another way.
Really a special man. Who took time, and my wife and I appreciated that.
Take care Shirley.
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May 2, 2008 at 1:33 pm
Brett,
You were very fortunate to have a good Dr. I hate to hear that you had GBS a second time. I hope you keep recovering and get the near 100% recovery you had from GBS in 1994.
We traveled to OK. many years ago and did some sight seeing of covered bridges and a state park in Missouri. It’s a beautiful state.
Keep recovering!
Shirley -
May 7, 2008 at 10:17 am
New to this. My motherinlaw was dx with GBS on March 13 of this year. She has had a terrible time with it. We took her into the er and the next day she was started on IVig. She did very well with it. Then they moved her to PT. She started it and then had to stop because the paralysis started to moved into her intestines and everything. She had to get her stomach pummed. Then they tried PT again and the GBS came back stronger. She had the PE done 6 treatments. They put her into a skilled nursing for rehab and she is now back at the hospital in ICU. Has anybody gotten it back so quick like this? She is having a real hard time with it.
Thank you, for listening,
hebglanzy20 -
May 9, 2008 at 5:49 pm
Glad to know that you are doing better. I had the steroids when I first got GBS and they hindered my recovery and did not help me just made it worse. The doctors did so many tests thaqt were unnessessary because they didn’t talk to the neurologists. I had a nerve biopsy even that showed inconclusive and it was not needed. I wish that more doctors would know that steroids are the last thing they should give. Communication is key and there needs to be more education. I deal with my GBS still and am currently still in hospital and they can’t figure out whether it is GBS residuals or something else. I am just one big medical mystery. Hope you all the best.
Sonja
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May 13, 2008 at 2:19 pm
Sonja,
Sorry to hear it has been so rough on you. You are so right about communication and education. Hope things get better for you real soon.
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Shirley -
May 13, 2008 at 2:43 pm
[QUOTE=hebglanzy20]New to this. My motherinlaw was dx with GBS on March 13 of this year. She has had a terrible time with it. We took her into the er and the next day she was started on IVig. She did very well with it. Then they moved her to PT. She started it and then had to stop because the paralysis started to moved into her intestines and everything. She had to get her stomach pummed. Then they tried PT again and the GBS came back stronger. She had the PE done 6 treatments. They put her into a skilled nursing for rehab and she is now back at the hospital in ICU. Has anybody gotten it back so quick like this? She is having a real hard time with it.
Thank you, for listening,
hebglanzy20[/QUOTE]
Welcome Heather,
Not sure I can help much but mabe they didn’t give IVig time to work and slow the progress before starting the PE. I hope things are better for your mother-in-law by this time.
Prayers for your family
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Shirley -
May 24, 2008 at 11:02 am
Hi Shirley, I’m new to this forum and want to let you know that I understand about the icu nightmares, I had so many while I was in there and I still cant talk about some of them but I understand that alot of people in that situation have the nightmares, I guess that its part of the process, but now theres no more and I think of them as part of the process. Hope that you are doing well, keep up the fight Brenda:D
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May 24, 2008 at 12:47 pm
Brenda,
Welcome and thank you for your words of encouragement. I am doing a lot better.
Keep getting better
Shirley
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