Was this GBS? (long)
AnonymousJune 18, 2007 at 3:36 pm
Sorry for the long post, but this question has been bothering me for some time.
In the summer of 2005 I was diagnosed with GBS, however, after reading about GBS, I’ve been having doubts about the diagnosis. I’m interested to get some other opinions because I would like to know what really happened. I’ll start by saying that I’m completely back to normal.
I’m male and I was 27 at the time. It was a hot month in the summer and I was working really hard to get ready for a move. I was lifting and moving things up and down stairs no stop at the time. At the same time I came down with a cold that had flu like symptoms (mostly fever and aching muscles). Stupidly, I pushed on with the move and didn’t rest much. Within a week of this cold I started to notice pain in my legs, arms and hands. I put it down to the cold and over working on the move (lots of walking, bending over and grasping heavy things). The pain was the worst at night. After a few days I was having trouble getting up and down stairs and grasping objects (like opening bottles). My trouble was partly from weakness and partly from pain. It was exactly the same kind of deep pain you get a day or two after too much physical activity.
At this point I saw my GP and he told me to take some OTC pain relievers and call him if it got any worse. By the next day it got so bad that I couldn’t do every day activities. It was almost impossible for me to get out of bed and I could hardly stand. I didn’t have the grasping power to even put on socks. I called my GP again and he told me to go to the emergency room. At this point my hands were too weak, stiff, and sore to do anything useful (just holding a phone was difficult). I was able to walk into the emergency room (an improvement from the night before). He met me at the emergency room and said he had talked to a neurologist at a near by hospital. After moving me to the other hospital I saw the neurologist that my GP had talked to. He examined me and said he suspected GBS.
Next they started testing me for everything under the sun. Apparently diagnosing GBS is more of a process of elimination than a simple test. They did a spinal tap to rule out an infection (it was negative). They also did lots of blood work. The first night I was at the hospital, they started me on IVIg and gave me Tylenol for the pain. I was very sore, weak, and stiff that night, but I had improved a lot by the morning. It was enough of an improvement that I was starting to regret going to the emergency room.
They moved me to intensive care for the next 4 or 5 nights. After they moved me I was able to get out of bed and walk around enough to get to the bathroom and take care of other basic needs. They also let me use the Internet on a PC down the hall. My arms and legs were still very weak, but I could do basic things. At no time did I need help bathing, eating, or using the bathroom. I asked if they were sure it was a neurological problem and not a muscular problem. The doctor did mention that one of my blood tests showed some muscle damage, but that he was sure I had GBS. He did a nerve conduction test which he said was inconclusive. I steadily improved over the next 4 or 5 days I was there. I was still very weak and sore, but getting better quickly. I used my laptop a lot, but it was uncomfortable to type, particularly with my arms bent.
When they discharged me (after about 5 nights) I was able to walk out on my own carrying by own bags. I was still weak and aching, but much better. I drove myself back to the hospital (about an hour) for the 1 week follow-up exam. By that time I was about 75% normal. I still got tired easily, but I could do most of my normal routine. The main thing I noticed was that my arms and legs tended to get uncomfortable easily if they stayed still too long, or if I lay with pressure on them for too long. This gradually went away over the next month or two. I went on my vacation (that had to be rescheduled) exactly a month after getting out. By that time I was about 95% normal. I did plenty of walking and didn’t notice any problems. I’d say I was back to 100.00% after 8-10 weeks and I haven’t experienced anything unusual since then. If you could erase my memory of that month I wouldn’t suspect anything had happened to me.
Now that you know what happened, I’d like to hear your opinions.
Here’s what is giving me some doubts:
I was diagnosed by my GP and the neurologist basically over the phone. The first time the neurologist saw me, he said they suspected GBS. He said the symptoms weren’t classic, but that it was close enough and they would treat it as GBS unless something else was found. Nothing else was found, so they continued the GBS treatment.
At no time did I have any numbness, or odd sensations, it was stiffness/weakness and pain that bothered me. I felt like I had run 10 marathons the week before.
While the pain and weakness was by far the worst in my hands and lower legs, it did not start at the tips and progress up my arms and legs.
I never had any weakness, or pain outside my arms and legs. I never had any trouble breathing, or speaking.
My symptoms started while I still had the cold and it only took a few days to get to its worst. It seems that with GBS there’s typically several weeks between the triggering illness and the onset of symptoms. Also, the symptoms normally happen more gradually.
My recovery seemed much faster than most of the stories I’ve read about here and I have no residual problems (not that I’m complaining).
AnonymousJune 18, 2007 at 4:31 pm
It sounds like what I described as a nerve condition test was actually and EMG (I don’t remember him referring to the test by name). Unfortunately, I never saw a detailed list of the test results. They certainly never told me about any conclusive test results. When they said I could leave, I didn’t feel like sticking around to ask any questions, I just wanted OUT!
AnonymousJune 18, 2007 at 5:16 pm
I think the timeframe for my symptoms may have been similar to yours, though I’m not sure I understood that clearly from your story. My trigger was a bad cold/mild flu that started during a very stressful few days. Within a week I noticed some weird aches, but thought that I had strained muscles to explain each of those aches. The progression went on with mostly what I thought was muscle pain and slowly increasing weakness, though it included some tingling in my feet, one thumb, and my lips, over another week before I recognized that something was really wrong. Ended up in emergency about 14-16 days after initial triggering illness & stress, I think.
At my worst I could still walk, just couldn’t step up steps or get up easily. No breathing problems. After 1 week in the hospital and 4 plasmapheresis treatments I went home walking just fine, no physical therapy needed – just lots of sleep and rest for the next few weeks, while my energy came back.
Anyway – your story of a mild flu that hit during a stressful event, that you didn’t even really slow down for because there was so much going on, sounded very familiar. And not all of us ended up completely paralyzed, or with breathing problems. And, it sounds like your turn-around happened right after starting the IVIG, that probably says something…
AnonymousJune 18, 2007 at 7:34 pm
It sounds like they did do a ton of tests on you. When you said your spinal test was negative, i gather it means it didnt have elevated protein? Spinal results sometimes come back as a false negative, I’ve heard it said that sometimes if they do the test relatively soon into the attack it could show up a false negative.
Reading your post makes me think that you could very well have had GBS. Time frame wise, pain and weakness – even if it didnt affect anything besides your limbs. Some people take a matter of hours to get to their worst, and others unfortunately linger for those 4 weeks to get to that point. The fact that you didnt have funny weird feelings, or that you werent numb etc could possibly be explained by the varient that you had. I am still learning so much about the different varients and what they all mean, including the way you recover and residuals you have. Having said this, remember that this is just an opinion. Remember, patients have so many different symptoms, some dont even have pain:eek: ! ….. that one was unbelievable to me when I first heard, however, over the years I have come to realize how different our ‘combinations’ are.
Having read your story, I have to say that I think your GP and neuro were on the ball. The fact that they got you in to hospital and also started IVIg was fantastic!
AnonymousJune 18, 2007 at 8:44 pm
Thanks for the feedback. I guess I was lucky to have a mild case that was quickly diagnosed.
The scary part was how little involvement in decision making, or feedback I got. As soon as I entered the hospital I pretty much lost control of everything. It’s not at all like they show on ER where everyone spends lots of time with you explaining what’s happening and you get to approve every action. I was lucky to see the neurologist for 10 minutes a day. I only knew which tests, or treatments were going to happen when they happened. I got no feedback on test results unless I specifically asked (which wasn’t easy in the 2 minutes of conversation I had a day with the neurologist).
Anyway, I’m fine now, which is all that really matters.
AnonymousJune 19, 2007 at 10:26 am
I must say your ER worked quickly and you are lucky. Your right it is not like what you see on TV.
10 Years ago when I had GBS my mom got sick of the run around with GPand she took me to ER. Hoping this would bump my visit as first time patient with neurologist. They ran test on me…got nothing sent me home and told me to call my Doc to see if they could get me in any sooner. Yeah it moved it up a week. In the mean time I got worse. Could harldy walk. When I would stand I would almost lose control of my bladder. Because I was trying to find what ever muscle power I could find.
I seem to be fine now…but I have noticed 10years later being under stress some residuals come back.
June 19, 2007 at 12:17 pm
it is amazing the different ways GBS can manifest. I was “mild” as well and it took about 3-4 weeks for me to reach the peak of my weakness, pain, etc. I was on my own since the dr’s blew me off and I couldnt get in to see anyone else for 3 months. I was very very aware of my body and symptoms and I knew when I stopped getting worse. The pain and most symptoms hit my left side (still affected to this day), my right side was weakest at the peak. GBS really and truly does affect everyone differently, and a “classic case” is jsut something that they wrote as a guideline. It isnt how everyone will present and I think that is one huge reason dr’s blow us off.
Yes stress causes residuals big time. And they can hit you even if you arent aware of your stress. Your body knows. It can suck, but hey we are alive and moving and have come so far! We are strong and brave and we have MOXIE!
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