Please help-do I have GBS??5 wks in hospital
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June 23, 2008 at 10:16 pm
Hi-This is my story. I am 30 years old. I am married with 4 Children. I had a neck and shoulder strain 2 weeks prior to ‘getting sick’. I had a cold 1 week prior to ‘getting sick’
5 weeks ago I passed out at church. We had a great day, attended church in the am, then to the movies and back to church. I felt fine other than the normal “I ate too much movie junk” with diareahea a couple of times. I figured it was the butter in the popcorn. I was sitting with my children, getting ready to go home when all of a sudden with no warning, I felt nauseas and as if I was going to pass out. A friend asked me if I was ok and tried to move me. As she did, I went out. I was unable to move or talk. Their first thought was low blood sugar and they tried to give me juice. I was unable to swallow it unless it got to the back of my throat and even then it was difficult. I could not move it to the back of my throat. I was unable to move or talk. I was taken to the ER by ambulance. I could hear everything said but unable to respond by mouth, only in my head. When we got there and the nurse took my temperature, she moved my tounge to the side and it stayed there. At one point I remember feeling as if I was passing out again. I could hear my husband yelling at me and I could feel my heart racing. He said that it was in the 130’s at that time. About 3 hours after the inital passing out at church, I was extremely nauseas and began throwing up. During the throwing up, my entire body was tingling very hard. After I threw up, I was able to move and talk again. My heart rate was flucuating between 110’s and 140’s. I was admitted for tachycardia. The first night I was unable to get up because I was so extremly dizzy. They sent me home the following Wed. In the hospital and at home I was extremely exhausted and weak. I could do nothing without help. I could not comb my hair, my arms were too tired. I could not sit up or walk anywhere because I was so dizzy. I laid in bed or on the sofa. My legs would buckle when trying to walk/stand. My heart seemed to pound and stayed in the 100’s to 120’s. My blood pressure was 80’s over 50’s unless I stood and then it went to 100’s over 70’s but my heart pounded hard and I was very dizzy. My appetite all but disappeared. My bowels did not move without hours of cramping to bring the stool down and I had no control when it did, I was unable to push it out. This would happen about every 5 days. No prior bowel issues. I went daily.
The following Tues. I went back to the DR for a recheck on my neck. I was unable to stand on their scale and had to use a wheel chair. I felt completly exhausted and out of it. They readdmitted me to the hopsital for generalized weakness. The next day I was only able to stand and take two steps with my husband and a doctor, my knees buckling the entire time. At this time they were saying I had mono (the spot test was positive but I had absolutly no symptoms other than weakness) The next day, physical therapy tried to get me up, I could not stand. They put me in a chair. Within 5 minutes I was in tears. I was unable to hold my head up or the trunk of my body. After 15 minutes, they put me back in the bed. I was almost limp as they put me in. I was completly exhausted. I was thinking as they put me in bed, that I would just turn over and go to sleep. I went to turn over and could not move my hips or legs. After about 30 minutes I could move my left leg and after about an hour I could only a little, move my right leg. I still could not move my hips. It was at the time of not being able to move my legs that my lower back (right on the spine) began hurting. Before they put me in the chair, my reflexes were fine. In the chair, before they put me back to bed, I had none in my legs, arms were not checked at that time. Later my reflexes returned.
That night the nurse turned me slightly and put a pillow behind my back because of the pain. I was getting ready to eat dinner. As I lifted my fork to the plate my arm felt weak and I dropped it in the bed. Then my arms began tingling, then my legs. The tingling got harder and harder and my left leg, then the right became paralyzed. My heart was pounding in the 160’s to 180’s. The paraylsis came up my body and into my arms and neck. All of that within seconds. My face was tingling too and my top lip would be paralyzed and then not. I was breathing hard. My chest felt as if it was being hit with a hammer, with my heart rate so high. The tingling was extremly hard and it felt as though someone was squeezing my abdomen as hard as they could. After about 2 hours, the tingling was not quite as hard and my breathing calmed. My heartrate was still high and my chest still hurting. I was not able to urinate and had a catheter placed. The feeling when they put it in, was less painful than normal. (I have had many because of having 4 children) It also felt as if it was in the vagina and uterus. About 4 hours after the intial episode, my heartrate returned to the 100’s to 110’s and the tingling stopped.
At about 6 am the next morning I awoke to my heart pounding again. Then mintues later, the tingling returned. It was extremly hard. The same tightness around my abdomen. At this time, my body began convulsing like a seizure. My legs “drew” up towards my body and my arms too. My fingers were sort of intertwined and appeared contracted. It was extremely painful. I was short of breath, I felt as though I could not breathe. I felt like I could not swallow, much like the very beginning. My heartrate was near 200. They gave me ativan to calm me. It calmed me fairly quickly but my heartrate remained high about 30 to 45 minutes. The doctor also did vagel massage to try to bring it down. The swallowing came back. At one point in this episode, my lips became paralyzed and I could not talk. It later came back.
That evening I was sent to a University hospital. A lumbar puncture was done and it was in the same spot that my lower back pain was in. The pain from it after they were finished was excruicating, I was screaming and crying. It was a spasm like pain. Bowel and appetite issue the same. I would be exhausted after eating 2 bites and have to take a nap. Talking would exhaust me and cause me to be out of breath.
4 days after being paralized, physical therapy tried to sit me up in bed by propping me up with pillows and a neck brace. I became incredibly nauseas and began dry heaving. I had hard dryheaving several times and after this I was able to move. Immediatly after, I was able to move/lift my leg but only immediatly. My neck and upper body came back. It was about 2 weeks after inital paralysis that I could freely move my hips and legs. After my upper body returned, my hips became very painful. It got to the point that it felt as if they were breaking when I was moved. Meds did not help. The doctors would not give me narcotics. I was taking Motrin and Ultram around the clock on a schedule. I had foot drop, the threrapists could not even bring my foot up. My calves were like jello. I have had pain in my knee joints (still have this) the hipjoint pain is better mostly. I had numbness in my feet and pins and needle sensations. Any touching of my feet hurt. This started mildly the first week after I passed out and got worse. My feet still have the pins and needle sensation when I put then on any surface, though now is not as bad. My feet have been cold ever since I passed out. Like refridgerator cold. The coldness began moving up my legs at the end of week 3. Now, they become warm again while I sleep but as soon as I get up, they are cold again. Throughout the entire thing until week 4 , I was extremely hot all of the time. I am normally an extremely cold natured person (like 3 sweaters, 2 pair of pants all winter and pants all summer)I could not stand blankets, had the thermostat on 55 and still was hot. (Even though my feet were so cold.
As of now I am on a skilled care unit. I had been doing well, walking some with a walker, balance and being able to stand the biggest challenge. Last Wednesday, Physical therapy was working with me. I had weights on my ankles and I just started feeling weaker with the exercises. My legs began tingling, not hard and not for long. I then tried to walk a longer distance, pushing myself until I almost fell. My blood pressure returned to 80’s over 50’s again. After that I felt exhausted and went to bed. That night I could not stand. Thursday, I was completly exhausted, unable to do therapy. Finally at dinner, they got me into a wheel chair to eat. My arms were noticibly weaker. I picked up my glass to drink and dropped it. Friday was worse. I could not walk with the walker and 2 people. I slept for an hour evertime I got up to use the bathroom. They used the wheelchair to take me. After a shower, it took me 2 hours to recover. I was too weak and tired to comb my hair. Today I am back to learning to stand again. No steps yet. My back and shoulder pain seems worse today.I had tingling in my right arm after trying to stand and hold myself with the walker. My bowels are still not normal but getting better. I have been takin 2 colace a day for 5 weeks and milk of mag some. It is as if they don’t help at all.
Bottom line is that the doctors say everthing is normal and I have stress conversion disorder. Another test was done for the mono that was negative. My family and I are not believing the conversion disorder. They say with GBS, symptoms don’t come and go, especially the reflexes. All they told me about the lumbar puncture is that the white cell count was normal. I don’t know about the protein. An EMG was not done. CT, MRI, many labs were done. This is where I am hoping that your experiences will ease my mind, Thanks so much!
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June 24, 2008 at 3:36 am
Wow, I’m stunned at how horrible a time you’ve had with whatever this is that has decided to disrupt your life.
My first thought was – you need to see a neurologist and possibly a rheumatologist get some more testing done. Did they test you for myasthenia gravis? Did they test your B Vitamin level? Your calcium level? (for some reason your symptoms reminded me of a low calcium level but don’t quote me on that) What about your ANA factor? Have they ruled out the hundreds of autoimmune diseases that are out there? Sjogrens? Sarcoidosis? What kinds of infectious disease tests have you had? Have they tested you for Lyme disease? West Nile? There are literally hundreds of diseases out there that can cause transient symptoms – get copies of your medical records from the hospital and figure out what has been tested on you – make a list/chart of the tests that have been run and their results and take that chart with you every time you see a doctor. I finally did this and it helped prevent many repeated tests and gave them a better starting place for ordering new tests, and over time it will show trends.
You need to understand too that the first defense of a doctor who does not understand what is going on is to say that it’s probably just in your head. If they haven’t seen it, can’t figure it out, then it must be you – it certainly couldn’t be them. I’ve been fortunate not to have any doctors do this to me – my first neurologist who couldn’t figure it out admitted he didn’t know what it was and I needed to go to a bigger university hospital – I was fortunate, but many many people are told it’s a conversion disorder to cover the doctor’s ego. Believe in yourself, trust your instincts – do you really believe there is something so bad in your subconscious that you would make yourself violently ill to avoid dealing with it? (pause) No, I didn’t think so either – and apparently your family doesn’t either – give them a big hug for that – they could have believed the doctor you know.
I can’t tell where you live but if there is a major medical school near you I’d think about heading there – I poked around in my rural Virginia getting nowhere for a year until my doctors told me to head up the food chain. Now my husband and I make a 2.5 hour drive to Johns Hopkins once a month where I finally got properly diagnosed and am now getting treated and improving. The difference is in the number of people they see with rare/weird/strange diseases. I have an unusual form of CIDP, so far Kazza on here is the only one who can nearly match me symptom for symptom (thank god for symptom solidarity!!!), but my doctor at Hopkins has seen loads of GBS and CIDP cases and he has the perspective to be able to say “yes it’s an unusual case but I’ve seen something similar…”
Don’t stop trying, it’s discouraging I know, but the answers are out there. It took me 18 months to get a proper diagnosis… others on here have taken even longer.
Good luck,
Julie
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June 24, 2008 at 7:51 am
Thanks Julie.
They did test for Limes Disease, calcium, cancer, aids, & MS. They said something about B vitamins but I don’t know which ones the checked. That is pretty much all the told me. I will definitly be getting all my charts when I am out. I saw many neuorlogists. They all said it was not neurological even though my symptoms are neurological. I too am from VA. I was sent to the University of VA for 5 days. We are from the Lynchburg area, what about you.
Thanks for reminding me about my family, I had not looked at it like that! Have we had stress, yes an enoumous amount in the last year. However, when I read about conversion disorder, I see nothing about what I am going through. What I have read seems sort of like it is a disorder people have. They might wake up one day with a paralyzed arm for a few days or have tremors while they sleep. If I have something in my deep psych, I have no clue what it would be. The UVA psychiatrists disagreed saying that there is usually panic attacks, depression, mood swings, etc. preceeding conversion disorder. I have not had that. I have been stressed but not as much now as say 6 months ago or even 3 years ago. Anyway thanks for your response.
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June 24, 2008 at 10:39 pm
Hi Rusty&Bambi, Welcome to The Family. Has your potassium levels been checked during the start of these events and at the ending stage as well? If they are fluctuating it could be periodic paralysis. Are these paralysis events better in the same day? What type of treatments have you had? Have you noticed any similarities with each event? like right after you eat, a certain food etc? Like a trigger.
I know how you feel about being dxed with a disorder that is unfounded, been there done that. Comb through your records and make notes of anything that is false or wrong, and bring it to the drs attention.
You’re lucky to have such great support. It will help you through to the end. Stay positive also. Take care. -
June 26, 2008 at 7:31 pm
Have you consulted a cardiologist and electrophysiologist yet? If not, you ABSOLUTELY need to. A good deal of what you describe, especially with the heart rate and blood pressure changes upon trying to change to an upright position, dry heaving upon going upright, etc. indicates dysautonomia.
I have learned quite a bit about autonomic nervous system dysfunction because I have a dysautonomic condition (primarily as a result of having GBS) called POTS, or Postural Orthostatic Tachycardia Syndrome. Before I was on medication for it, I would pass out when I stood up. My blood pressure would fluctuate wildly when I changed positions, and my heart rate would go tachycardic at the drop of a hat. It would often change from 60 bpm to 130 bpm in a matter of a few seconds if I went from lying to standing. Sometimes I would faint. And if I did something like get dressed, wrap presents, walk across the room, just any type of simple activity, my heart rate would easily shoot up to 170-200 bpm. I also had random tachycardic episodes, like adrenaline rushes, that were really scary. I also felt AWFUL. I was weak, nauseated, had insomnia and difficulty eating, GI trouble… Generally, the only time I could tolerate anything was lying down completely flat. It’s hard to live your life completely horizontally!
I’ve had a few of the neurological issues you mentioned, but again, I have a history of GBS, so I’ve always kind of assumed they were related. I have had problems with temporarily being unable to swallow (but really just for maybe 30 seconds at a time), an arm or leg not moving well temporarily, tingling and numbness that comes and goes… including in my lips. I have several overlapping issues (GBS, POTS, and an abnormal brain MRI that resists any real diagnosis), though, and the doctors have a hard time unravelling the conditions to diagnose what is causing which symptom, so we really just focus more on symptom management than anything else. And I’m okay with that for now, mainly because it’s under control.
As I said, you need to see not just a cardiologist, but also an electrophysiologist. Because you’re obviously having orthostatic and autonomic symptoms, one things you definitely need is something called a tilt table test. That helps the doctors understand the changes that happen in your body with changes in posture and position. A diagnosis of several different forms of dysautonomia can be made via tilt table test (POTS and neurocardiogenic syncope come to mind; I’m not sure about mitral valve prolapse). You also need to have an echocardiogram (an ultrasound of your heart) to determine if your heart rate problems are related to some structural problem. Have you worn a holter monitor yet? That is also something that would be wise.
There are multiple causes and variants of autonomic disorders, and I guarantee you’ll see a lot of yourself in the descriptions if you take the time to peruse the websites I am about to list:
[url]http://www.dinet.org/[/url]
[url]http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm[/url]
[url]http://www.mvprolapse.com/dysautonomia.html[/url]
[url]http://www.medicalnewstoday.com/articles/76785.php[/url]
[url]http://www.potssupport.org/what_is.html[/url]
[url]http://en.wikipedia.org/wiki/Dysautonomia[/url]Much like GBS, it can be difficult to find a doctor who truly understands dysautonomia. You must be willing to keep asking and perhaps to receive multiple opinions from different medical professionals. If you have a tilt table test and a cardiac workup, though, your records should speak for themselves. Even if you have to take them to several doctors for different interpretations, don’t stop until someone can give you an answer.
Treatment for dysautonomia can be tricky, though, and it’s all just trial and error. Some people have great results, and others just don’t. For me, my primary treatment involves taking a beta-blocker medication every day. It keeps my heart rate from getting too high, stabilizes my blood pressure, and keeps me from fainting. I still battle some symptoms, but the medication keeps them manageable. Without it, I can barely get up off the couch without falling, fainting, going tachy, and feeling like all the blood just vanishes from the top half of my body. I am so grateful for my medication. I hope to never stop taking it, ever. Now I’m working full-time again and am living a relatively “normal” life for the first time since I got GBS.
Some people also benefit from taking a drug like florinef, which is meant to boost your blood volume. Something like this can also be helpful if taking a beta-blocker brings your blood pressure down too low as it addressed your tachycardia. Based on your heart rate fluctuations, though, it seems like at the very least a beta-blocker would be a natural thing to try. Pain medication like you described (as well as any of the neuro drugs like neurontin or lyrica) is useless against something like this.
Please feel free to send me a private message if you’d like to discuss this further. I suffered for months with POTS, undiagnosed, after my recovery from GBS was well underway. The doctors kept looking at neurological sources because of my personal history, so I ended up getting treated with medications that only made my condition worse. It wasn’t until I finally got referred to a cardiologist that I got the POTS diagnosis, got proper treatment, and started to feel better.
Oh, that that’s one other thing I should mention… People with dysautonomia tend to be very sensitive to medications, and I was taking several things that exacerbated my autonomic problems (Lyrica, Pamelor, and Sudafed were some of the worst); also, those with dys tend to be hypovolemic (meaning low blood volume), so it’s harder to replenish lost fluids, like CSF after a spinal tap. It’s easy to unintentionally make your condition spiral out of control just by going through standard medical tests and treatment (the worst I’ve ever been was after a host of new meds coupled with a spinal tap)…
Please come post your questions here:
[url]http://ndrf.org/eve/forums?cdra=Y&s=2701035343[/url]
Perhaps you will get some helpful insight from people on that board as well.
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