For My Post-GBS Buddies
AnonymousAugust 18, 2008 at 10:57 am
Good Morning. Boomerbabe, Ali, Chrissy, Chris, Maureen, and anyone else who had GBS years ago and is experiencing residuals. I have been doing some internet searches and found a website with several studies listed and some of the outcomes of those. Some of you may already have looked at it but wanted to share it with those of you who may not have found it. There are several articles written by drs. that talk about the long term effects of GBS. Most of them were very interesting and validate our issues around fatigue, weird sensations, etc.
The website is:
You may find something that answers some of your questions. Lots of reading. There are studies/articles that talk about phsycosocial issues-something that came up on the boards today, how family and friends do not validate the residuals and think their family member/friend is out to lunch:D , and much more. I feel better just having read some of this. There is an article by Joel Steinberg, a Dr. Kleopa (I really appreciated some of things he has reported on), Mark Brown, who I have heard mentioned on the forums, so we know this is stuff that is not fly by night but rather from drs. who are respected and trusted by forum members.
Hope this helps some of you.
AnonymousAugust 18, 2008 at 11:30 am
I would not mind seeing his research and what he has written. In fact I would like to check all this out even though I am CIDP both are interesting topics. If I didn’t have to travel so far, I would be seeing him instead of waiting for Duke. Thanks for sharing this!
AnonymousAugust 20, 2008 at 6:45 pm
Thanks for the link and sharing this with us ‘oldies’ in mind. I have read other articles and have asked boss and siblings to read, but they do not want to. I am considering going to the symposium just to meet others and heard what some of those great doctors have to say mainly for my mental state.
Any of us ‘oldies’ going to Chicago???
AnonymousAugust 20, 2008 at 9:48 pm
Your welcome Chrissy. I know what you mean about family and I am not sure how we can educate them around this when they don’t want to be educated. 🙁
I wish I could go to the symposium. I think it would be so valuable. I hate to say this but in so many ways, we “oldies” are the forgotten few by many doctors, friends, family, etc. I am so glad I found this site as it really and truly validates what I am experiencing.
If you go, you will have to fill me in on all the details around residuals that you can get your hands on!
AnonymousAugust 21, 2008 at 1:07 am
I never considered myself a long-term sufferer of GBS until recently.
I thought that GBS was mostly a one-time illness with very little consequences. I never followed up on GBS medically.
I always had residuals, but they were considered minor.
Now I am 20 years out of GBS, and now I am starting to have some major issues.
Everytime I have a medical appointment they find something else wrong with me.
My nerve tests come back with significant damage to my arms and legs.
I am very fortunate to be mostly functional and have little or no pain.
I wish I would have really followed up on my condition from 1988.
I was very ignorant to the long-term issues related to GBS. I probably would have lived a different life and made some very different decisions.
Now Post GBS is somthing I have to deal with everyday.
I have new symptoms coming to light all the time. I am hoping I have not progressed to CIPD, but it is a possiblity.
I am finding that the medical community does not really know what the long-term affects of GBS are. They can not explain what is going on. A lot of what I have learned has been by reading and doing searches on the Internet. I have found the Forum very helpful as well.
All I can say is that you listen to you body and follow up on this life long condition.
No matter how much you recover it is likely you have some type of long-term damage they may come to light immediately or later in life.
I did just a few simple things today, and my arms went numb and extremely weak. This reminds me that beyond doing nothing that I have issues.
Lets try to keep in touch and follow up on what is going on.
I am learning more everyday!!!
Take care and take it easy!!!
CIPD Maybe in 2008
AnonymousAugust 21, 2008 at 7:37 am
Hi Chris! So true! So true! I think if I could have changed some things in my past also I would not be in my shoes today either.
When I got diagnosed with Lupus they told me that I needed to quit smoking. My lungs felt great! So I kept smoking. The lupus can cause lung damage and in 1998 I developed a severe case of asthma. Now it’s mild COPD because of smoking and asthma. I never did much research on lupus back then either. Just wanted to get well and get my life up and running again.
If I would have known what I know now, I would have too changed several things myself. I never got followed up much after my diagnoses with lupus. Took my meds and did my average day. Saw my doctors and many times I would cancel the appointments because I felt to good to be going to see them. When I went in remission, I actually stopped going to see my doctors. I didn’t feel like I was sick enough to be taking up a spot appoinment wise for someone that really needed that spot! I know better now!
AnonymousAugust 21, 2008 at 3:36 pm
Chris, I really hope we do stay in touch. We are so alike! Our residuals are similar (and I am referring to all of us “oldies”). There has to be a corrolation between the GBS and what we are going through now There are too many similarities for it to not be.
Some days I run up and down the stairs like a “spring chicken” and the next day I have to darn near lift my right leg with my hands to make the leg work. Yesterday I stopped at my daughters to drop off some stuff. I climbed up on to the tailgate of the truck and was kneeling there and couldn’t get up. I struggled for a minute or two and finally made it but what a scary feeling. Now I know how a beached whale feels! 😀
Two days ago, I felt quite strong but everytime I would use my arms and then stop, it was like miniature lightening strikes going up the backs of my upper arms. Last night I had issues with my feet. It feels like I am being given needles in my toes. Ouch! This is over and above the regular buzzing and tingling! Went to bed and couldn’t sleep because of it and then the muscles in my left leg, foot and ankle began to spasm and cramp.
I often wonder what the future holds with this. I try not to worry, but it seems my body is never at rest. There is always something buzzing, zinging, twitching, spasming. I never sleep through the night and am always tired. I too pray this is not CIDP.
Anyway, let’s all keep in touch. I appreciate hearing about your residuals. It helps to know I am not alone.
AnonymousAugust 21, 2008 at 4:47 pm
Hey Jan! It sure sounds like CIDP to me what you are describing. I am beginning to wonder if I had GBS many years back when they diagnosed me as having a stroke. I lost feelings in my leg and arm and throat felt funny. Was in the hospital two weeks being tested. Then they told me they could not find a stroke. Mentioned MS and since I was getting better I would need to see out patient neurologist. So I think about that incident. Now I have CIDP! And what you described sounds exactly what I go through and it’s painful!
Also the one day being able to do something and the next can’t do anything at all! Strange stuff! Really strange stuff! I’m about like you! You described it perfectly at how I do things in my home also. I get down on a floor, I have a hard time trying to get back up.
Are they still doing research on GBS and using clinical trials. I wonder is stem cell would help us out? Has anybody ever had the stem cell procedure and what the outcome was?
AnonymousAugust 23, 2008 at 10:24 am
I just read through this thread. Thanks for the information. I will be checking it out. Like so many of you, I go through spurts of feeling pretty good and then have times when I can barely walk. How do you explain this to family members and friends who look at you and think you are healthy? It is so frustrating.
Take Care and have a great day,
AnonymousAugust 23, 2008 at 2:32 pm
Since we are all a bit older, maybe you can help me on this one… I have been going through blood pressure situations (have had high BP for many years and controlled well). Lately it has gone up and my regular doc has been trying out different meds on me – I’m on a beta blocker then he added an ace inhibitor and I got a dreadful dry, hacking cough (which I have seen as a side effect). Now he has me on a brand new beta blocker and I have seen some better BP numbers.
All during the past few months, I have had really bad problems with swelling of my feet/ankles. Oh, and he has me on two diurectics. With drinking extra water (glug, glug) and trying to stay cool in the horrible Oklahoma heat, my right foot/ankle is much better. BUT my left one is not responding and I have been experiencing really bad pain in the bottom of my left foot and generally up my leg. I felt when I got GBS that my left side was hit harder and it has always been weaker. I’m not sure what I really am asking. The last two nights I really started getting scared when I went to bed… I live alone. Last night I almost when to the ER because of the pain in the bottom of my foot, but would what they do/say with my history of GBS??? I even got a tape measure out and it really wasn’t too much bigger than my right leg to my surprise. I was too afraid to check my blood pressure. Several xanax finally did settle me down and I went to sleep. Feel better in the mornings.
The last neuro I went to (this past year) did confirm I have sensory pheripirial (?sp) polyneurpathy. But he was very unsympathtic and just down right mean. So no going back to him. Do you think I should get my regular doc to get me to a cardio guy? This all just really scares me and it does feel good to get to express it. Thanks for listening.
AnonymousAugust 23, 2008 at 3:52 pm
Hey Chrissy! Have they recently checked your urine lately. Sometimes a kidney problem can cause high blood pressure and problems with the legs including fluid build-up. A cardio work-up might be a good idea too. Either way I would get checked. Sometimes we get other problems besides GBS that have nothing to do with GBS at all. So it might pay to see your regular doctor and push the issue with him. Hope you feel better soon!
AnonymousAugust 23, 2008 at 7:22 pm
I have problems with bp also. In the last few weeks my bp can read normal and take it later, it has surged, 160s to 190s. Dr. has done a scan with contrast and can find no reason for it. Have seen 2 Drs. about it. One looked around with the catheter when he fixed my leg blockages, could find nothing that cause the high bp. They put me on clonidine for bp surges over 150. This last week my bp has stayed normal (108/67 right now). Mine could be GBS related.
The xanax help to calm me down when the bp run high and raised my anxiety.
You should see a cardio Dr. You don’t know what is causing this and your bp needs to be under control, even if you need to go to ER. Also had the urine checked, it was ok.
AnonymousAugust 24, 2008 at 1:20 pm
I don’t know how old you are, but I too have been having blood pressure elevations lately, even on blood pressure meds. I am in peri-menopause and am wondering if that is the reason. I have had ekg and echocardiogram which were normal.
My feet are also a problem. One day they are okay, the next day the pain is unbearable, and on another day they are numb. My regular doctor says he wishes there was something to help, but unfortunately there isn’t much we can do but treat the symptoms.
Take Care, boomerbabe
AnonymousAugust 24, 2008 at 10:27 pm
Well I can’t say I have high blood pressure. But…over the years my blood pressure was always low and I would have dizzy spells, etc. I now have “normal” bp so that would be an elevation, right? But still not a concern to my docs. I was in for shingles to the ER and it was really high that day, but he felt it could be the pain and stress.
As to swelling, are you on neurontin? I found the meds made my hands and feet swell really badly. I went off it as I felt it was not good to retain that much fluid. I too, am in my mid fifties so could be looking at menopause (but I have convinced myself I am not doing “that”:D ).
Anyway, it is something to get checked out. As to the pain in your foot….I get a pain as if a stake is being driven through it. Some days it takes my breath away. Is that the type of pain you have?
AnonymousAugust 25, 2008 at 1:31 pm
Jan – The pain I would feel in the bottom and center. It felt like there was a huge rock in it. Strange, but I wore some good walking shoes this weekend and my left foot looks a lot better and feels better. Right now there is a bit of a twinge in my foot, but nothing like it was. I am not on any neuropathy medicine right now as good vitamins with a lot of B complex has really helped this past year. I have gained so much weight over the years taking neurontin, amitryptiline, etc. that I am not real keen on these meds anymore.
Boomerbabe – I am 50 and surely in menopause. Saturday my bp was 180/105 – surely that was from my anxiety.
I made it through a couple of rough nights, so at this point I am going to write these symptoms off to GBS. That of course could change on a moments notice. I figured I would probably get quicker testing if I did go to the ER if it got that bad again.
AnonymousAugust 25, 2008 at 3:23 pm
Hi! to all.
I have a few questions. I do take BP meds. There are times that my BP drops to 80’s/60’s. You can guess what I feel like when that happens.
I take imuron & lyrica & they both cause weight gain. Does anybody have any ideas what I can do to get this weight off?
I do stretching exercises every morning & try to get on bike a couple days a week. But that makes my knees hurt so bad I can’t stand the pain. I try really hard to eat healthy, but this weight gain thing is driving me crazy.
Please any ideas I’m open to anything.
Also, any thing that helps with the numbness & tingling of hands & feet.
AnonymousAugust 25, 2008 at 5:10 pm
Cathy, I didn’t loose any weight until I went off the neurontin. Then I lost about 16 lbs. in 6 weeks. I think most of it was fluid retention as my hands and feet swell. The neurologist said that neurontin/lyrica/etc. slow down your metabolism so you need to get it revving. I am like you. I can’t exercise much as I then experience so much pain.
I talked to a trainer and he told me to try eating more frequently….6 small meals vs. 3 large ones. That doesn’t work for me with my job though so I have difficulty sticking to it. I can gain weight when I am on those meds just by looking at food. As I said, at this point I went off them, but I am still able to manage the pain. I know that at some point that is probably going to change and I do not look forward to it. My pain is not constant, it comes and goes and never stays very long other than at night. The residuals I experience are uncomfortable and annoying but not to the point yet where the pain is unbearable. I am keeping my fingers crossed that it doesn’t get there for a while yet!
I take lots of vitamins etc. I take B complex, Vitamin D, potassium, magnesium, calcium, MSM, chondroitin and glucosamine and when I miss them for a couple days, I sure notice the difference. The magnesium, D, B, and potassium are supposed to help with the nerves. I can’t say one way or the other whether they help the tingling and numbness. I still have them. These vit.s might be worth a try for you. I could PM you the dosages I take.
I have also found foot massages help with the numbness. As long as they aren’t too rough that is!
AnonymousAugust 25, 2008 at 5:21 pm
I am 51 and in what they call peri-menopause. It seems to make everything worse. I have had high blood pressure for 6 years,( runs in my family ), but recently it has gone up and my doctor increased my medicine. I take cozaar, 100 mg once daily. When I had acute GBS all those years ago, my heart rate and BP were affected. I am wondering if something is going on now.
I went to Weight Watchers and lost 35 pounds. It really is just eating healthy. Also, when I am able, I try to walk and do stretches. I use to ride a bike but that is becoming more difficult.
Do any of you have trouble with your hands? I have developed pain in tendons of hands. I have numbness in hands from carpal tunnel.
Hang in there! boomerbabe, AKA Susanne
AnonymousAugust 25, 2008 at 8:38 pm
Thanks for the info. I do take Vit. B-12, B Complex, Calcium, Vit. E, Occuvit(recently diag. with macular degeneration 🙁 ) along with all my meds. I can’t do strenous exercises because I just don’t have the stamia or the balance. There is just no way I can go off my meds. I have so much numbness & tingling I can’t imagine what it would be like off my meds. I have an appointment in Oct. with a Rhumatoligst (sp) my daughter thinks I have mkore going on then just GBS. Who knows. I just know I’m sick and tired of being sick and tired 😮
I would love to do weight watchers but I can’t drive to the meetings. Before I got sick I was dieting & going to curves. Loved curves. I has lost 40 lbs. but I have gained it all back:(
Thanks Guys for your input. It is so helpful to know others are going through the same thing!:p
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