rates of reoccurrance of GBS / CIDP
AnonymousAugust 15, 2006 at 9:03 pm
I’m wondering if anyone has information about the rate of reoccurrance of gbs and cidp in patients who receive treatment, versus that in patients who recieve no treatment.
I guess I’m wondering if the treatments have any effect on whether or not this comes back.
AnonymousAugust 16, 2006 at 10:15 am
kelly, it can reoccur. i have had 4 events in the last year. it doesn’t happen very often, but there is 4% of a chance that it will reoccur. a lot of rest is necessary and do not over do things. i have the tendency to over do things sometimes, but i will rest when i listen to my body. after the first event last aug, i was not treated. after the second event in oct, i was treated with ivig and had aseptic menigitis due to the treatment-not good! in dec i was not treated-dr was too afraid to try pp. in may i was not treated-dr wouldn’t try a treatment after my last reaction at that hospital.:( i have not fully recovered after any of my events. i still have numbness, weakness, extreme fatigue issues, and the list goes on. i can walk short distance with a cane, for which i am happy with, for now. 2 weeks ago my husband woke me up after i took a nap, i couldn’t move very well, and my eyelids wouldn’t open. i was in the process of going paralyzed again, but with his help i stopped the process good enough to keep me out of the hospital again. i am still recovering from that event-but i am not counting it as a full event. my neuro can’t explain the way things turned out but at least i didn’t have to go to the hospital again!:)
AnonymousAugust 24, 2006 at 9:52 am
If okay, please allow me to ask a slightly different question (or perhaps worded a bit differently and I am too ignorant to understand the initial inquiry):
Once you have had GBS, do you have an increased chance of a second onset? Also, what are the chances of a second onset?
AnonymousAugust 28, 2006 at 3:13 pm
[QUOTE=angel2ndclass22699]it can reoccur. i have had 4 events in the last year.[/QUOTE]
Cheryl I’m wondering what your symptoms were like during the reoccurances? Were they the same as the first onset of GBS? If not were they the same for each reoccurance? Just curious.
September 5, 2006 at 7:09 pm
I have had GBS three times. I had it first when I was 18 in 1958. I had a viral infection and started having numbness and weakness. The doctor diagnosed me with GBS. They didn’t have any treatments then so I just went home and did exercises myself. It lasted about a year and I recovered and had a normal life until 1989 when I had it again. This time, it took about 2 months to diagnose as the weakness and numbness didn’t show up for a while. I had PP with this episode. I was off work 14 months and went back part-time to my secretarial job. I recovered from this episode and had it again in 2002 when I was under a lot of stress. I knew immediately what it was. I was treated this time with IVIG. I am now 66 years old and get tired easily but am doing most everything I was doing before including mowing my own grass. I am thankful I am as well as I am. I hope I never get another episode.
AnonymousSeptember 9, 2006 at 7:08 pm
I have pain and symptoms ALL the time. The pain is so intense in my knees and ankles. My leg bones hurt so bad that they feel like they are going to break. My arms and hands are becoming more involved than they ever have. I am able to get around for the most part on my own, but if up and about for more than an hour or two I really pay for it the rest of the day. most meds just give me a minor relief if any relief at all. I am doing another round of ivig hope that this works. I have edema in my whole body sometimes feel like i am bloated and belly could explode. ankles swell and they look like elephants feet. I am unable tp keep my bowels going without using a laxative. is there anyone out there that can help so I can become one that has the good days too. I will try what helps diet, exercise etc :confused:
AnonymousOctober 3, 2006 at 11:55 am
A very selfish question:
Is there any information regarding the time of initial GBS onset to the time when the 3-5% of recurrences actually occur? I know that I am probably paranoid (scared is likely more apt). But, after initial GBS attack in early July, I caught pneumonia on ~9/23 and have been very concerned since then(closing in on the two week point). I am counting off each day until I hit the 3 week point past the pneumonia onset. 3-5% doesn’t sound like much, until odds of (a) breaking neck 1/10,000 (b) rebreaking neck 1/10,000 and (c) GBS ~3/100,000. For an engineer, PE, MBA, CPA, and CFO, I understand numbers extremely well … they just don’t seem to understand (or care for) me.
Maybe I should play the lottery?
AnonymousOctober 3, 2006 at 2:16 pm
That is an interesting question. I have heard (not first hand tho) of some relapsers who do so after a few decades. However, I’m trying to think of Cheryl’s experience (angel2ndclass) as she has had replases a few times, with not that long a period in between. I’m sure she will post with all the details.
AnonymousOctober 4, 2006 at 11:53 am
It is a strange thing to be wary of a 3-5% chance of recurrence. I have found myself trying to ensure that everything is taken care of for my family, even if it only reduces the workload on my wife for a couple days.
I have my finance and accounting staff prepped (although they dont know it) with all recourses needed if I am out of work for a length of time. I have documents prepped for my company’s investors, bankers, etc. drafted for the next quarter (dividend payments, interest calculations, financial forecasts, etc.)
I never allow more than a few articles of clothing to remain in the hamper at home. I always have the grass cut short just in case. The dishes are always done. The groceries are always ready. The cars are always gassed up. Cleaned the basement and garage out yesterday.
All finances, insurance, college savings accounts, etc. are all laid out and organized in my home office (although wife is unaware). I have thought through ways to communicate with my wife if I cant talk or even move.
Lots of stupid little things like that are getting done, as if a recurrence could hit again, just to help family for a few days of reduced household work. It truly is laughable. I even have a plan laid out for others (neighbors / friends) to help my wife out throughout her pregnancy (not due until June!!!).
Well — time to draft up preliminary performance appraisals for my staff (not due until January) — hee hee hee.
Strange bug, this GBS, and especially my reaction to it. 😮
AnonymousOctober 5, 2006 at 12:18 am
my house is next in line!!!! i have plenty to keep you busy for at least 2 weeks!!:) i wish i were that organized and had that much energy. everytime i work around my house for more then 1 day of about a total of 2 hours in all, i get knocked on my back for 2 days. if i push it i go paralysed, or like the last 3 times in the last 2 months i go partially paralysed. i just can’t go more then my 2 hours in a day.:( i do get to see what if anything a physio dr can help me with this friday. and i can’t even drive myself to the appt because its 20 mins south of me-over my 15 mile limit right now. soo… just let me know when your finished at ali’s place!:)
AnonymousOctober 5, 2006 at 12:44 am
Doug, you will know when you are having a second attack. aug 3 05 i woke up paralyzed from the neck down, oct 14 i went to the er because i had 1 day of a sore throat and could not breathe easily, 30 mins after i got into the er i was paralyzed from the neck down, brought on by pneumonia, dec 26 woke up with weakness on the leftside mostly, got into the shower to try to relax the muscles-paralyzed from neck down in 5 mins, may 7 06 woke up from nap paralyzed from head down and could not open eyes, aug 4 woke up from nap paralyzed from head down, but my hubby worked with my eyelids and legs and arms and got my connections going again-if he had not have woke me up at the right time i would have been a goner, turned out to be what i call a partial paralysis event, aug 23 woke up from nap-thanks to hubby again)darn glad he has good timing) paralyzed head to toes again-another partial paralysis, sept 16 was awke and visiting with my sister at my parents house when i tried to get up off the couch at 3 a.m. to go home my legs from the knees down were paralyzed-hubby took me home and with my sisters help they got me into my house and in a chair-hubby took my sister back to my parents house(about 1 1/2 miles away) and came back i was paralyzed from my neck down again-another partial paralysis event. the partials were all brought on by long tiring days(could not and would not stop doing some of the things like son’s school open house and family reunion and bar hoping!) all 3 times i was worn out and all 3 times i recovered in about a weeks time, to the same point of recovery each time-not good but not paralyzed either.
i am also dealing with a thyroid problem and other autoimmune diseases acting up, so i can’t totally rule those causes all from exhaustion, but it does come up quite abit. my thyroid can also come into play on the 3 events, as i was low on numbers in july and high on numbers right in the middle of the last event–just adds more to the pot of questions to talk to the neuro about-maybe there is hope yet! i also have to say i am extremely vulnerable to pneumonia and breathing problems.
those are just the highlights of my last year- i would bore you even more if i went into detail about each of the dates and causes.
take care of yourself doug!:)
AnonymousOctober 9, 2006 at 7:51 am
Well, today marks day 15 since onset of pneumonia, and no new tingling, etc. Hopefully I am in the clear!
Angel and Ali, just let me know when you want me to show up for housework … I charge in beer. Don’t worry … it is watery, girly, cheap beer (Coors Light).
Have a great week.
(PS — Sorry for long delay in getting back to you. I traveled with my toddler and wife to Erie, PA Wed-Sun to visit the grandparents before the snow comes. My twin brother even came down from Rochester to visit for a day. Other than airport security making me take off AFO and even making me take off Shaun’s (18 mo.) shoes, we had fairly easy travels — if any travel with a toddler is easy.)
AnonymousOctober 11, 2006 at 5:09 pm
[QUOTE=nebraskafan]I have pain and symptoms ALL the time. The pain is so intense in my knees and ankles. My leg bones hurt so bad that they feel like they are going to break. My arms and hands are becoming more involved than they ever have. I am able to get around for the most part on my own, but if up and about for more than an hour or two I really pay for it the rest of the day. most meds just give me a minor relief if any relief at all. I am doing another round of ivig hope that this works. I have edema in my whole body sometimes feel like i am bloated and belly could explode. ankles swell and they look like elephants feet. I am unable tp keep my bowels going without using a laxative. is there anyone out there that can help so I can become one that has the good days too. I will try what helps diet, exercise etc :confused:[/QUOTE]
Try – Flexseed Oil – Only use the cold seed – I use 2 TB a day in OJ or milk – very good for you and works very well – also very healthy for you.
AnonymousOctober 24, 2006 at 9:06 pm
hI, guess I am not exactly a newbie, been dealing with this issue for 10 years this month. I have found this website and hope to find and give support here. I have had so many repeated attacks and live with pain a lot that I have actually learned to deal 😉 with it! Is there a chat room here to chat with others?
AnonymousNovember 13, 2006 at 9:50 pm
Doug – reoccurrance used to be my biggest fear for my daughter as she had what they called “an early relapse” which was actually worse then the initial onset. I then learned to relax – the one positive thing, if it reoccured – we would know what it is this time. Brandy was mis-diagnoised twice. She was 14 at the time of onset and is now 21, a senior in college. Brandy was very very fortunate and except for a few residuals, recovered very nicely. She is a member of the MSU color guard and last year she collapsed on the field – she was extemely exhausted and had a very stressful week (mid-terms and the passing of her grandma) but she wears a medical bracelet. IVIG, fluids, bed rest and she was back on the mend. It took Brandy a long time but she eventually learned not to keep her medical history a secret but to share it with her friends and roommates – no one panicked, they took her to the hospital first and then called me. Although I pray GBS never rears it’s ugly head again, we no longer stress or worry about it.
I’ve never been and never will be as organized as you – I think we could all use a lesson from you on being organized. Take care of yourself and welcome to this wonderful family.
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