Guillain-Barre Syndrome

[Christina30]

On Thursday Aug 28th, about two and a half weeks ago, I woke up with major numbness in my arms. They felt so heavy that I just let them rest in my lap and held on to the steering wheel as I drove to work. Everything around me felt a little dreamy. When I got to work it seemed to take a lot of effort to even talk. I was only there about 30 minutes when I got two very sharp, but quick pains in my head then I was extremely dizzy. I work at a doctor's office and when I stood up there was a nurse near by who sat me down and took my blood pressure. It was 170 over something and my normal is 118, I've never had any blood pressure problems. When she stood me up from there I really could not feel my legs, I could not walk on my own at all. They laid me down, and by then I could not move any part of my body on my own without a great deal of effort, if I could move it at all, I felt like I was in even more of a dream, and it was still hard to talk. I went to the ER where they did a EKG CAT Scan and lots of blood work. Everything came by normal, yet I still could not move anything normally. They said I must just be dehydrated, even though blood test proved that was not true. They gave me an IV and sent me home as soon as I could shuffle around on my own. I drank a lot of water and rested for the next week with no improvements. I was still dizzy when I stood up, my arms and legs still did not move at all naturally and they still felt numb and tingly. I went to a family doctor that Wednesday who said I had major muscle weakness and admitted me to the hospital for more test and to see a neurologist. The MRI electro nerve test and more blood work all came back fine as well. The neurologist told me that I must have GBS and sent me home. I actually felt a bit better just a few days later, not at all normal, but better. I went to work that next Monday and it was difficult to do even the light duty desk work they gave me. By Tuesday around lunch I was heading back to the neurologist. I was getting more and more dizzy again, my blood pressure was back up, and my heart rate was very irregular. I could feel the pressure of my heart pulsing through out my body especially in my head, it kind of made me feel nauseas. I still was not able to walk properly, plus the numbness was getting stronger agian. The doctor said he allowed me to go back to work too soon. He said I must go rest and stay as stress free as possible. Now a week later I'm still at home, still dizzy when I get up, still feel numbness off and on, and for the last four days my chest has been tight and I get short of breath even from talking. And as of last night I have started getting pains though out my body. They feel like zapping nerve pains that come out of the blue and then disappear again just to show up somewhere else. I am now concerned with this new development. I don't understand why my symptoms seem to change and why my body keeps adding new ones. The neurologist just says it's all part of GBS and with time it will go away. I don't like the vagueness of GBS all it's symptoms or how long it will take to heal. Can anyone relate to my symptoms or the way that my body is handling GBS? I do know from the other stories that I have read, that I have a lighter case of GBS and I am so grateful, but at the same time I'm very concerned about the change in symptoms and the length of healing needed. Any comments are so very welcomed, thank you all!

[paula55]

To Christina30,
I was first diagnosed with GBS July 2007. Your symptoms seem to be following the usual course of GBS, and they usually peak around the 3rd to 4th week. I too, was fairly healthy and it seemed my body was having a meltdown. If you are having symptoms of shortness of breath, SEVERE weakness/numbness/tingling sensations in your feet, legs, arms and hands, you should either l) return to your neurologist as soon as possible or 2) find another neurologist who is familiar with GBS treatments!! This is one serious disease and can be life threatening. When you were in the hospital, did they give you any treatments, i.e. intravenous immunoglobulins (IVIG) for 5 days or plasmapheresis? These treatments are usually standard for GBS patients. Please post again soon and let me know how you are doing.

[Christina30]

Thank you so much for your reply! They did not do any treatments on me while I was in the hospital. They just did a bunch of tests and sent me home the next day. I know I have a mild case of GBS, which I guess is why they didn't think I needed treatment, but even this mild case is keeping me out of work and restricting me from my normal life. This hit out of the blue and it was only during the first several hours that I could not walk at all. I quickly started shuffling around, it wasn't pretty but it was enough for them to let me go home. I still walk slow and a little funny. It was a week and a half later when I start getting short of breath, some times it's a bit scary, and then almost another week before I started feeling the pains. I've been dizzy when I get up since day one. I just went back to the neurologist today and he is sending me to get some pulmonary test done for the breathing and more blood work to check on the pain. We'll see if these test show anything new. I don't know how confident my doctor is anymore. Are you still dealing with issues from GBS? Also, did your symptoms fluctuate? One minute I have enough strength and energy to finish a light task, like folding a load of laundry, and the next thing I know lifting a tea pitcher is a struggle and I feel like I could faint just from being up for the 2 mins it takes me to get to the kitchen and then back to bed. Again any input is very welcome, it all helps. It's comforting to know that I'm not alone! Thank you

[horselover]

Christina30

I think you will find that symptoms will improve and then come back. I have found the same thing and I started with my GBS in Nov. of 2007. It has been a long haul but I find that I feel much better if I get at least 10 hr. sleep each night. Only my feet are still numb and tingly and that is where I get my shooting pains. One of my neurologists told me that the feet usually come back last because the most nerves have to regenerate to get there. I have been able to reduce my Neurontin from 900mg a day to 300-500mg a day depending on if I'm having a good day or bad day. I consider this a major triumph as I hate to take medication. I was out of work for 6 wks and then went back for only 2 hrs. each day for 2 weeks, then 4 hrs a day for 2 weeks, then 6 hrs a day for 3 weeks before I was back to full time and that was probably too soon but I was concerned about loosing my position at work, so I pushed myself. I just want to reassure you that it does get better but it is a slow process. Drs. have been telling me that it can take years for the tingling to subside (if it ever does) because nerves take a long time to repair themselves. Most people do make a full recovery though so take it easy and have faith.

[Katie27]

Wow, my experience is ALMOST IDENTICAL to yours. The main difference is that my symptoms developed more slowly (over the course of ~1.5-2wks). I am having trouble getting a diagnosis- I've already seen my family doctor, a neurologist, and a rheumatologist. I've also had an MRI (head & neck), a CT scan, and all of the blood & urine tests they could think of- everything was totally normal. I think the main problem that might be confusing my diagnosis is how much & how quickly my symptoms come and go.
My most alarming symptom- which just developed in the last 2 weeks is shortness of breath & lightheadness. Frequently, when I try to get up and move around I feel like I'm going to black out and I have to lay down again. Also, in the last week or so I've noticed my blood vessels are bright blue & puffy- especially in my hands & wrists (also arms, legs & feet). They have never been anywhere near this visible before. Did you notice any change in your veins? I'm wondering if that might be somehow related to our light-headedness. Also, did you notice any trembling in your arms or achiness in your joints?

Please let me know if you learn anything new from your doctors- whether it's further confirmation that you have GBS or if you're given an alternate diagnosis (I will do the same). Your experience is so similar to mine I would be really surprised if the cause was different. Good luck!