No Reason for GBS Onset
AnonymousOctober 16, 2006 at 11:05 am
Just out of curiosity how many people never found any reason for their GBS onset? I didnt have have any type of sickness, surgery, shots, etc prior to getting GBS. I was tested in the hospital for viruses and bacterias including campylobacteriosis and there was never a preceding condition found. Just curious how many other people never had any reason for the onset.
Also, if you did have a reason for your onset, what was the reason? Was it a shot, sickness, surgery, etc?
AnonymousOctober 16, 2006 at 3:05 pm
I also had no reason for CIDP onset. I am 67 and did not expect this in my lifetime. I began falling in Oct. 05 and by April 06 I had a bad fall and landed in ER. The doctor there looked at all the Xrays and history and said “This is a classic case of GBS” I then saw the neurologist, in May, and after all the tests and spinal tap he confirmed it. However with research on here I found it to be CIDP. He just refers to it as chronic.
I was hospitalized 16 days and had OT and PT, but after release I fell and fractured my ankle.I have the cast off now. The pain in my lower legs and feet is still bad, and most of my fingers are numb. I have IVIG next week, so hope it helps this time. I take 30 mg of Cymbalta along with 300 mg of Lyrica. I sort of “walk” on my walker with the use of two AFO’s for my foot drop. So I have a long way to go. I go to PT twice a week. My balance is still awful and weak in my “peg legs”. I agree with all the people on here who stress rest is most important. My goal is to walk!!
AnonymousOctober 16, 2006 at 3:18 pm
I did have the tingling and the pain in my legs less than a month after my hystorectomy.(of course no one in the medical world believed me). so until september while working there were several associates that came in sick with terrible bronchitis and such illnesses. it took less than nine days to become very ill and in the hospital.They taold my family it was viral meningitis and would get better. could not walk had to have help to walk. the next day had bellspalsy in right side of face and less than 8 hours later in my leftside also. the dumb look on all the doctors faces were scary to say the least. they had no idea. I was transfered to university medical center in denver. Where ivig was administerd andi began to get better. but they were sure I had cancer but did not know how to find it. (everytest under the sun).
I was told after three weeks we think you have gbs/mf but we are not 100 percent sure. after was seemed like a million tests.lp emg mri cat scan etc. i went home was recouperating very well slowly but surely. I know that this is very hard for many people even me to know that we are not going to bounce right back after this..
went back in December thought that I was well on my way to recovery and my fifth nuerologist told me dx of CIDP. but seemed to be doing really well..
i took a april trip to las vegas woo hoo!! I was excited, Legs spasms throught the flight but not to bad. we enjoyed the nice weather and walked and enjoyed the sites. I walked so much that my legs split open and bled! OUCH!! ugly and very swollen we finished our five day trip and flew into denver where there was a drastic weather change from 80+ to snowing and 30 degrees. and there were several people around with cold and flu like symptoms. of course I got sick and I am now on a really long road of recovery again. and I am currently in another relapse right now as they say( are theysure of my dx???) and having ivig again did not work. so as to say what started this I dont think that I can.
all I know that is we need to get some fund raisers and corporate sponsors to get some more research and figure this terrible disease out!!!!
AnonymousOctober 16, 2006 at 3:30 pm
I too live in Nebraska right on the South Dakota border. We have a small type hospital in Yankton SD. I feel I have a very capable neurologist with a great PT unit. I met a lady he treated who is in her 80’s. She had GBS so bad she was unable to breath or move. She is now walking and doing just great. She comes in frequently for IVIG treatments. I was luck, I had a milder case, just paralysis in the legs. I am still working hard trying to get back to walking. If you are close to this area and are interested in seeing this Dr. let me know, I will give you info. Love those Huskers……
AnonymousOctober 17, 2006 at 1:56 am
i was still getting over the flu when i came down with GBS very rapidly. It had been lingering for 2 weeks. All the mums and kids in my mothers group had had it (we were all talking about it the day before i ended up in hospital!) There had also been a 24hr stomach bug going around town which one of my sons and i had both had with vomitting and diarrhoea. So in the 3 weeks they talk about as the key period before GBS I had had both the flu and gastro so take your pick which one it was that caused it!
AnonymousOctober 18, 2006 at 9:30 am
Even after 26 years, the jury is still out on an a clear reason for my onset. I had had Mono about 18 months previous to my major onset, had a short onset about 4 months after mono that was not dx’d at the time. I had an upper respiratory infection 2 weeks prior and also I was pregnant and Rh negative. Could be any or all of the above that brought it on, they were never sure.
AnonymousOctober 19, 2006 at 11:38 pm
I had an extremely bad intestinal virus due to food poisoning that lasted for about a week after eating some forbidden dry sausage direct from Italy. I was okay for a week before I started experiencing what I now know were the beginning symptoms of GBS (before the attack, I attributed the symptoms to from bad fitting shoes to working too hard). Thirteen days after eating the tainted food I knew I was in trouble. My husband also got the food poisoning but not for as long – the difference between us was that I have been on prescribed Prilosec OTC since April for a severe form of GERD. This effectively cuts OUT stomach acid production, thus severely limiting the immune system’s ability to fight off germs. I was never told of this “side effect”. I informed the CDC of this and was told they have heard of lowered immune response in some people but apparently not enough to warrant a warning. I don’t know how many other people out there may be on an acid reducing drug but it seems to me that its kinda scary that maybe a bug you might have been able to fight off in the past gets the best of you in the worst way because of it.
AnonymousOctober 26, 2006 at 1:41 am
I might of had a Sinus infection but it was not bad enough for me to see the doctor and then it went away or did not get any worse. Also had no surgery but did have my teeth cleaned a month before the onset. From time to time I eat something that does not agree with my digestive tract. SO WHO KNOWS! Doctor said Sinus Infection was just a guess.
AnonymousOctober 26, 2006 at 12:18 pm
I had a Hep A/B booster shot on a Friday and dislocated a rib the same day (but the cause of the pain was not known at the time) … by Monday I was pins and needles … 3 weeks later rib was relocated … 3 weeks after that, and still continuing to lose ability to breathe/walk/move/etc., I was diagnosed with GBS (my records say tentatively).
No one knows for sure what was the cause, but this is the combo I believe triggered the whole event.
AnonymousOctober 27, 2006 at 5:24 pm
There are so many factors for developing GBS.
Did you have any dentistry done?
Did you have any cuts on your fingers,etc?
Did you have a urinary tract infection?
Upper respiratory infection
Digestive tract infection
These are just some of the causes.
You could have a virus in your body and not be aware of it. Lots of people do and who knows which thing will set off our immune systems.
AnonymousOctober 28, 2006 at 1:02 pm
I ate some steamed shrimp that was not cooked as well as it should have been. Evidently, not all of it was bad as my wife ate some from the same package. I developed a bad case of diarriea that palm sunday night and was not able to slow it down with over the counter meds. I was on a trip to St Simons Isl Ga. and after being sick for a night-day-night, we decided I needed to be home where I had some lomotial which I have used in the past. I got over the problem and felt fine for exactly one week and got up to take my dog for a walk and could not walk very well. I saw a Dr. that afternoon, but she failed to dx GBS. I got progressively worse wed and thur and finally went to ER on thursday night. I did tests all day friday and started treatment on Friday night ivig. Did 5 nights and came home. Could not walk except with walker for a few days and then could furniture walk to the bathrooom!
I just passed my 6th month and still have a lot of leg and foot pain and cannot walk very long or very well. I hope it will get better soon. I was in good shape and very active for a 70 year old. My hardest problem is remembering what I was used to doing and having to accept those days may be over. My dog sure misses her walks every morning in these beautiful mountains.
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