Getting GBS again???
AnonymousOctober 13, 2006 at 10:08 pm
Hi all, great to see you again and I’m happy this board has finally gotten fixed for the umpteenth time. 😉
I’m not sure what is going on with me. Quick rundown: very quick onset of GBS in March 2002 after surgery, lots of p/t, wheelchair, cane, then almost normal at 2-year mark but still suffering weakness on left side. From 2004 to 2006 I’ve improved, albeit more slowly, but had finally seen the light at the end of the tunnel — thinking I might actually see a near complete recovery soon.
Last weekend I contracted a mild bout of food poisoning that had me staying in bed and/or very close to the bathroom for a few days. I kept expecting to feel better at any moment but instead, I am getting weaker. Today I can barely stand and when I try to walk I fall over. I’m SO tired. I just had 12 hours of solid sleep and right now I’m so drowsy I am falling asleep over the keyboard. Even breathing feels exhausting – like I’m lifting weights every time I inhale.
I’m pretty well educated on everything GBS but I’m not sure what all this is. I haven’t over-exerted myself in any way, other than throwing up a couple of times a week ago. What is scary to me is that each day that goes by I’m getting weaker, even though all I’m doing is lying in bed.
I know you can GET GBS from food poisoning but mine was brought on by surgery. Not only that but it was a very very fast onset. One minute I was bopping around the house, the next minute I was immobile on the kitchen floor. So I’m not sure what it feels like when it comes on slowly.
Is this something I should be worried about or no? Oh God, I’m so tired. Lifting my arms takes everything out of me. I’m almost too exhausted to even be scared. But I’m still scared.
AnonymousOctober 13, 2006 at 10:26 pm
It’s good to hear from you, but I’m worried about what’s going on with you now. I’m wondering if maybe the weakness is from having an empty stomach, or being dehydrated after the food poisoning? Both can make you weak.
Also, from everything I have read, food poisoning is a really harsh punishment on the body. GBS’ers find it harder to recover from any illness than they did prior to GBS. Perhaps it’s just the combination of all of the above making you feel so weak.
I wish I had some advice for you. Do you have a good doctor? Don’t wait too long to consult one, if you are still getting worse.
Please keep us posted on how you are doing.
AnonymousOctober 13, 2006 at 10:50 pm
Over the years, I too have had very bad flu’s and food poisoning ( Post GBS 26 years, dx’d at 18), several times it required hospitalization, and I, like you, was very weak and tired and found it very easy to slepp pretty much non-stop for days on end. But to be sure there is not something else going on, consult you doc, especially if you experience any additional tingling or loss of sensation.
Hope this helps!
Bless you and we will hold you up!
AnonymousOctober 14, 2006 at 12:03 am
birdie, take it from me-been there done that! go get checked out. my first time was brought on by a simple knee surgery, 2nd time-pneumonia, 3rd time-food poisoning, 4th–i’ll have to check my diary, 5th, 6th and 7th-extreme fatigue and over doing it-those were very mild paralysis events. hopefully ivs will get you hydrated and up around again, but its nothing to fool with or put off. welcome back-i just wish you were feeling better!!:( take care.
October 15, 2006 at 5:00 pm
I had GBS in 1989 and in 1994, I got food poisoning on a cruise. I got very weak and was worried I had GBS again. I went to my neurologist and he tested my reflexes and told me no, you do not have it. You would have no reflexes if you did. I had to get IV fluids and was off work for a month. I had three antibiotics and I believe they made me worse. Dehydration can really make you weak. Hope you feel better.
AnonymousOctober 29, 2006 at 10:45 am
Hi all – I’m still alive … 😉
After my little bout with food poisoning set me back about 4 years in recovery, I am finally able to carefully move around without tripping or falling over. The most activity I’ve gotten is when I was finally able to make the bed on Friday. Of course, I then laid in the bed for the rest of the day because I was so exhausted 😮 but it’s getting better.
I think I went through all of my “stages” again, especially the ever-popular ANGER one that I seem to love and cling to, but I think I might finally be moving past the anger & depression (again!) and moving toward just making it through this new life.
Thanks for the support and advice y’all! 🙂
AnonymousOctober 29, 2006 at 7:00 pm
This is little consolation I suspect. I got food poisoning long before I met GBS. I drove to work, felt rotten, decided to go home and threw up in the car whilst entering the motorway (I do not recommend it). I was sick again later. But, I went to bed and even though I stopped vomitting I was very weak and I remember that it did last a number of days – I don’t remember how many but I was certainly off work for at least a week. I tried taking those drinks that replace the necessary minerals – I didn’t actually manage to swallow them (they are disgusting and made we feel sick – again). Thinking back, I felt weak when I got out of the bed.
Food poisoning is not something to treat lightly – after all, food that you have eaten has poisoned your body – not simply upset your stomach but poisoned you.
Of course you are scared, that is quite natural. I was scared – and I hadn’t even heard of GBS then.
Personally, I would keep an eye on the ‘getting weaker’ bit, otherwise, were I you, I would be in bed.
I would take note of what others have said about food poisoning, dehydration etc.
Whilst I understand the anger you feel, please don’t allow it to become a rod for your own back – anger may force you out of the bed, but it will not make you better, not from food poisoning.
If it helps, stop thinking “food” poisoning and think instead – your body is coping with the fact that it met poison. Given the chance, it will deal with it but it needs the chance and the time and only you can give it that.
AnonymousOctober 29, 2006 at 7:39 pm
yes, i remember your anger from way back when. now, instead, i also see your humor punching through it. way to go. speaking for myself, gbs is a sure way to bring about humbleness. nevertheless, losing 4 years sucks. hope your recovery back to where you were pre food poisoning doesn’t take 4 years. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousOctober 31, 2006 at 12:16 pm
[quote=gene]hi birdie, yes, i remember your anger from way back when. now, instead, i also see your humor punching through it. way to go. speaking for myself, gbs is a sure way to bring about humbleness. nevertheless, losing 4 years sucks. hope your recovery back to where you were pre food poisoning doesn’t take 4 years. take care. be well.
gene gbs 8-99 [/quote]
:p LOL, yeah when I say anger I don’t mean a little ticked off, do I??? “Blind rage” might be more accurate. 😉
I actually thought back then that I had [B]more[/B] of a reason to be angry than some others because I had been an [B]athlete[/B] pre-GBS and my entire life had revolved around sports and activity. [B][I]What an @ss I was!!![/I][/B] Like [I]anyone[/I] wouldn’t have experienced a [U]profound loss[/U] after suffering this horrible life-changing disease!
** Humble pie sure tastes like cr*p, doesn’t it??? 😮
So, I’m still not able to coach my ball team, can’t assist with the cheer stunts, can’t play tennis or bike or swim … but yknow what? I’m still involved with my kids and we actually have more time to [U]just sit and talk[/U] now. They have opened up about so many things that [B][I]I probably would have missed before.[/I][/B]
Of course I’m still sad that I can’t participate in the activities that were so joyful for me pre-GBS, but they are more in perspective now. And I try to focus on all the things I get to experience now due to the fact that I was forced to slow down enough to see what’s going on around me.
You were always so wise, gene. I hope to one day be just like you. 🙂
AnonymousOctober 31, 2006 at 2:24 pm
Glad you are feeling better!!:)
Angry? Back then, with the advice I was giving you…I don’t think you liked me very well.:rolleyes: I kept telling you things would get better, how your recovery at your stage was better than others, GBS takes time…and time was the best medicine for GBS, but you really didn’t want to hear that.:eek:
AnonymousOctober 31, 2006 at 5:24 pm
Let’s talk longterm here…like 26 years post GBS. I too was an athlete, gymnast, cheerleader, head majorette, cross country runner, swimmer, dancer, softball player prior to GBS. I got it 6 months after HS graduation. Didn’t ever think I would do any of those things again. And still have some problems with some of them, but I managed a softball team in 20’s and 30’s, taught aerobics in my 40’s, taught baton for 15 years and still swim regularly. I can run but only short spurts between power walks now. I am not as limber as I was at that age, but I know that I am more limber than most 45 year old women due to the stretching and gymastic routines I have managed to continue to do over the years.
But I have to watch because even today, overdoing can put you back. You will learn or are learning at this point how to listen to your body and gauge what it can and cannot do. You will learn better than anyone when it is time to try all these things again and what you can do and how to get it done.
GO for it babe.
AnonymousOctober 31, 2006 at 6:47 pm
Please don’t be calling yourself an ass. I suspect that the last person to realise the effect on them of a profound loss – is the person concerned.
Actually, I think hindsight can be a pain in the whotsit. Sure, the only way we could have known ‘then’ what we know ‘now’ is to have met GBS a long time before ‘then’!
AnonymousNovember 1, 2006 at 9:02 am
GBSFI Summer 2003 Newsletter, [I]The Communicator,[/I] has the following Article: [B]Can Guillain-Barre Syndrome Recur?[/B] By Joel S. Steinberg, MD, PhD
After patients have recovered from Guillain-Barre syndrome (GBS), it is not uncommon to worry about developing GBS again. Many patients whose GBS was triggered by a respiratory tract infection await the aftermarth of their next URI to see if it will again be followed by GBS. Fortunately, recurrence of GBS is rare.
Some simple calculations indicate the theoretical risk of recurrence of GBS. Each year about 0.5 to 2 people in a population of 100,000 persons develop GBS. The literature suggests that about 3% of patients who have had GBS will get it again. Thus, having had GBS does potentially increase the chance of developing another episode. However, a second case of GBS in a recovered patient is an uncommon event.
Afer a patient has had GBS, it is possible to again develop symptoms that may suggest a recurrence. For example, some recovered patients may start to experience limb weakness and/or abnormal sensations-numbness, tingling, impaired snesations, etc., in the feet, legs and/or fingers or hands, symptoms that they may have had during their GBS. Of course, recurrence of these symptoms naturally raises a fear that GBS, or perhaps its neurologic cousin, a chronic form, is developing. It is certainly well known that chronic inflammatory demyelinating polyneuropathy (CIDP) can develop in a patient who had GBS. But this sequence of events occurs rarely. Rather, it is much more common for newly developed symptoms that are similar to how the patient’s original GBS started to actually reflect some other disorder. There are many examples.
Weakness can be caused by many disorders other than GBS. Examples include damage of the axon of the motor nerve (the nerves that go to muscles), from many causes (diabetes, hypothyroidism [a small gland in the neck that regulates the body’s metabolism], heavy metal poisoning, vasculitis, etc.). Simple blood tests (HbA1c, fasting or random blood sugar; thyroid stimulating hormone [TSH]); analysis of a 24 hour urine collection for lead, mercury, and thallium; sedimentation rate and antinuculear antibody test, etc.) can help to diagnose these disorders. The list of actual disorders and corresponding test for these is longer.
Abnormal sensations can also develop from several disorders other than GBS. Examples include some of the disorders listed above (diabetes, etc.). Tingling and/or numbness of the first three fingers, especially upon awakening, is a typical finding in carpal tunnel syndrome (pinching or compression of the median nerve in the wrist). If the nerve compression progresses, the grip can weaken, often a criterion to surgically release to nerve from entrapment. Pinched nerves at the lower back or neck, even in the absence of pain at these areas, can lead to abnormal sensations and/or weakness in the feet and legs (often called sciatica) or arms.
A larger list of disorders that can mimic GBS is described in the GBS Foundation’s [I]Overview[/I] booklet. The important thing to remember about recurrence of GBS or a variant, it is prudent to perform a thorough diagnostic evaluation for the many possible causes of peripheral neuropathies. The first step is usually a detailed history, to determine the patient’s current symptoms, and family history, followed by an examination. Quite often, an updated nerve conduction velocity-electromyography (NCV-EMG) study is very helpful. And various blood and urine tests may then help to pin point the cause of the patient’s new symptoms. Then appropriate treatments can be instituted. Especially as we get older, many of the disorders mentioned above are more apt to develop. [B]End[/B]
Well, that takes a lot of the guess work out, doesn’t it? As rare as GBS is, and as hard to find a component doctor and neurologist familiar with GBS…if it were me, I would just get plenty of rest, fluids, and monitor the tingling/weakness and other obvious GBS signs – If it got bad enough, I would go to the ER, explain my symptoms of GBS and demand IVIG treatments. But, keep in mind, I am not a doctor.
AnonymousNovember 7, 2006 at 5:55 pm
[quote=Jethro]Hi Birdie, Glad you are feeling better!!
Angry? Back then, with the advice I was giving you…I don’t think you liked me very well. Jethro[/quote]
Actually Jethro, I pretty much didn’t like [B]anyone[/B] back then. 😉 Everything I loved to do and how I identified myself was flushed down the toilet so yeah, I wasn’t happy.
No more hiking, biking, running, swimming, softball, tennis, badminton, gymnastics or dancing. No more coaching the kids softball team, choreographing the dance team, supervising and demonstrating the cheer stunts, or camping out with the girl scouts. I couldn’t even run my regular booth at the church youth group kick off (football toss). Everything I did that made me feel like ME was gone in one minute and has stayed gone for almost 5 years now.
(My my, was that a little residual anger popping it’s gnarly head up again? 😮 Okay, okay, maybe I haven’t [B]completely[/B] embraced the [I]Acceptance[/I] stage but I’m working on it.)
[U]Time[/U] heals the physical and emotional wounds, of course, but sometimes it just takes a lot MORE time for some than others, especially when that person refuses to accept what has happened and stays permanently stuck in the [I]Anger[/I] stage. 😀
Thanks for the article! It’s now been over a month since I got sick and even though I’m very weak and not getting better yet, I [B]have[/B] stopped [U]getting worse[/U] so I count that as improvement!
~ Thanks for the support, y’all ~ 🙂
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