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Old 08-10-2012, 10:52 AM #1
Essie73 Essie73 is offline
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Default Guillain-Barre syndrome? Or something else?

Greetings...I'm new here and have been having an ongoing polyneuropathy issue of some sort since June and am hoping that someone might have some insight as to what's going on. My story might be a bit little long, so please bear with me!

At the start of June I had an absolutely terrible headache that involved pain and sensitivity to light. I don't usually get headaches, much less bad ones like that. Went to sleep and it was gone the next morning.

Two days later I developed a stomach bug, and had swollen glands in my neck. Overall, I just felt flu-ish. It lasted a few days and went away.

A couple of days later I woke up to an odd tingling sensation in my feet and legs. At first I thought that maybe I slept in a strange position, but the tingling sensation starting slowly inching upwards towards my arms and face as well. At that point I knew something was wrong, and called the doctor and went in right away. She wasn't sure what was causing the tingling. There were no other symptoms, so she gave me a shot of of toradol as a temporary fix to help relieve any inflammation and suggested that we follow up if it continued. By the next day the tingling was stronger and I started having numbness and joint pain, at which point, they began to suspect that I might have Lyme disease. But the test came back negative. They did blood work to test for auto immune diseases, thyroid problems and vitamin deficiencies and everything came back within normal range. My sed rate was slightly elevated, though not abnormal.

By the second week of June I began to experience strong, burning pain throughout my whole body and extreme fatigue. A few days later and my arms and legs felt like 500 pound weights, I was in a lot of pain and my muscles really hurt. I was extremely weak and just wanted to sleep all the time. Within hours my gait started to get a little off, and I had to hold the walls when I walked. Walking itself was quite difficult. Other symptoms included pain in my fingertips and toes, as well as numbness and a slight sense of vertigo. I could breathe normally, however, I did find it hard to take a deep breath or catch my breath. Of course, I sought medical help immediately. The doctors suspected multiple sclerosis, and sent me for an MRI of the brain that day. The radiologist found two "areas of concern" that were indicating possible demylination. After that they told me that it looked like I probably did have MS, and that I had a "classic presentation." They set up an appointment with a neurologist, but the appointment was two week away, the soonest they could get me in. In the meantime, they put me on gabapentin and gave me oxycodone for the pain. My husband and family had to take care of our small children because I was having that much trouble functioning. It was all so scary and strange...there I was, in my 30s and totally healthy a few weeks ago and now this, seemingly out of nowhere. It didn't seem to make sense how quickly or how strongly this all came on. I felt like I had been hit by a bus.

A couple of days before my appointment with the neurologist my legs felt rubbery and weak. Then they went almost totally numb and my head hurt. My husband got scared and called an ambulance. At the hospital I explained that the doctors thought I might have MS and all the symptoms. They did a cat scan, the ER doctor examined me and they talked about doing a lumbar puncture but decided against it. Since they didn't see any immediate danger, they sent me home. Shortly after that I had a spinal MRI, which was totally clear and unremarkable.

By the time we finally did see the neurologist at the start of July things had improved a little bit. I was still feeling like utter crap but I could walk better and wasn't as dizzy or weak. My arms and legs didn't feel like lead weights anymore. I was still totally exhausted and I had bad muscle aches in my legs and arms, along with numbness and some random odd sensations in my arms and legs.Still, I was ready to hear him confirm an MS diagnosis. Only he didn't. His exact words were "I am going to have to respectfully disagree with the radiologists findings." He said he didn't see any indication of MS. I asked him what this could be then, and he said he had no idea and did not suggest any tests to find out. Great. Said to go to another specialist and check back with him in a few weeks.

Frustrated, I went to another doctor who said he believed that I had "acute ideopathic polyneuropathy", more specifically, a "mild" or "moderate" variant of guillian barre. When I learned more about the symptoms and realized that all of this began after a stomach bug, it all kind of made sense to me, and the timeline all added up, too. Felt relieved to have a name to the problem, and hopeful that with time I would be mostly back to my normal self.

Went back to the original neurologist for a followup last week and told him that the other doc thought it was a GBS variant, and he strongly and totally disagreed and said if that were the case, I would have been in the hospital because I would be so sick. (Insert forehead slap here. Yeah buddy, no kidding that I should have been in the hospital! Good grief). Didn't believe that I could possibly have a milder case of it. But since he still had no idea what it could be, he ordered a nerve conduction test and an EMG, which I had on Monday. They still haven't gotten back to me with the results and I have called them three times already. Hopefully, they will finally give them to me today.

Does anyone have any thoughts or insight on the situation, or any idea as to what could be going on? Does this sound like a GBS variant to you? Thanks in advance, I really appreciate any help or insight.
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Old 08-10-2012, 07:29 PM #2
rmschaver rmschaver is offline
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Default Nuerologists

I am very sorry for your suffering. There have been several posts I have read where the nuerologists just seemed completely out of touch. Can you get a second opinion from a different nuero?
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Old 08-10-2012, 08:25 PM #3
Dmom3005 Dmom3005 is offline
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Dmom3005 Dmom3005 is offline
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I think if these test come back with no answers. I personally would
keep with the thoughts of the GBS, and find a doctor that will treat
you for this.

Look it up on the internet. See if the symtoms sound correct.

Donna
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Old 08-10-2012, 10:08 PM #4
BobShannon BobShannon is offline
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Default I Survived. Guillaine Barre

I contracted Guillain Barre on Feb 7,2010 and was paralized for 6 months. Today I am still recovering and have recently started to walk unaided. I run a Facebook group of 93 recovering GBS clients, a few medical professionals, including physical and occupational therapists, a few RN's with specialties in neurology, a single MD and my large family, 2 of whom are medical professionals.

I read your post as concerns MS or GBS or what else...it occurred to me that my group could help you through this process whether or not you have GBS, CIDP or other. Feel free to contact me privately, or if you have a Facebook account, you may look up the group name "One Step at a Time; Living with Guillain Barre". You would then request to join the group, as it is private.

Bob Shannon
Spokane, WA



Quote:
Originally Posted by Essie73 View Post
Greetings...I'm new here and have been having an ongoing polyneuropathy issue of some sort since June and am hoping that someone might have some insight as to what's going on. My story might be a bit little long, so please bear with me!

At the start of June I had an absolutely terrible headache that involved pain and sensitivity to light. I don't usually get headaches, much less bad ones like that. Went to sleep and it was gone the next morning.

Two days later I developed a stomach bug, and had swollen glands in my neck. Overall, I just felt flu-ish. It lasted a few days and went away.

A couple of days later I woke up to an odd tingling sensation in my feet and legs. At first I thought that maybe I slept in a strange position, but the tingling sensation starting slowly inching upwards towards my arms and face as well. At that point I knew something was wrong, and called the doctor and went in right away. She wasn't sure what was causing the tingling. There were no other symptoms, so she gave me a shot of of toradol as a temporary fix to help relieve any inflammation and suggested that we follow up if it continued. By the next day the tingling was stronger and I started having numbness and joint pain, at which point, they began to suspect that I might have Lyme disease. But the test came back negative. They did blood work to test for auto immune diseases, thyroid problems and vitamin deficiencies and everything came back within normal range. My sed rate was slightly elevated, though not abnormal.

By the second week of June I began to experience strong, burning pain throughout my whole body and extreme fatigue. A few days later and my arms and legs felt like 500 pound weights, I was in a lot of pain and my muscles really hurt. I was extremely weak and just wanted to sleep all the time. Within hours my gait started to get a little off, and I had to hold the walls when I walked. Walking itself was quite difficult. Other symptoms included pain in my fingertips and toes, as well as numbness and a slight sense of vertigo. I could breathe normally, however, I did find it hard to take a deep breath or catch my breath. Of course, I sought medical help immediately. The doctors suspected multiple sclerosis, and sent me for an MRI of the brain that day. The radiologist found two "areas of concern" that were indicating possible demylination. After that they told me that it looked like I probably did have MS, and that I had a "classic presentation." They set up an appointment with a neurologist, but the appointment was two week away, the soonest they could get me in. In the meantime, they put me on gabapentin and gave me oxycodone for the pain. My husband and family had to take care of our small children because I was having that much trouble functioning. It was all so scary and strange...there I was, in my 30s and totally healthy a few weeks ago and now this, seemingly out of nowhere. It didn't seem to make sense how quickly or how strongly this all came on. I felt like I had been hit by a bus.

A couple of days before my appointment with the neurologist my legs felt rubbery and weak. Then they went almost totally numb and my head hurt. My husband got scared and called an ambulance. At the hospital I explained that the doctors thought I might have MS and all the symptoms. They did a cat scan, the ER doctor examined me and they talked about doing a lumbar puncture but decided against it. Since they didn't see any immediate danger, they sent me home. Shortly after that I had a spinal MRI, which was totally clear and unremarkable.

By the time we finally did see the neurologist at the start of July things had improved a little bit. I was still feeling like utter crap but I could walk better and wasn't as dizzy or weak. My arms and legs didn't feel like lead weights anymore. I was still totally exhausted and I had bad muscle aches in my legs and arms, along with numbness and some random odd sensations in my arms and legs.Still, I was ready to hear him confirm an MS diagnosis. Only he didn't. His exact words were "I am going to have to respectfully disagree with the radiologists findings." He said he didn't see any indication of MS. I asked him what this could be then, and he said he had no idea and did not suggest any tests to find out. Great. Said to go to another specialist and check back with him in a few weeks.

Frustrated, I went to another doctor who said he believed that I had "acute ideopathic polyneuropathy", more specifically, a "mild" or "moderate" variant of guillian barre. When I learned more about the symptoms and realized that all of this began after a stomach bug, it all kind of made sense to me, and the timeline all added up, too. Felt relieved to have a name to the problem, and hopeful that with time I would be mostly back to my normal self.

Went back to the original neurologist for a followup last week and told him that the other doc thought it was a GBS variant, and he strongly and totally disagreed and said if that were the case, I would have been in the hospital because I would be so sick. (Insert forehead slap here. Yeah buddy, no kidding that I should have been in the hospital! Good grief). Didn't believe that I could possibly have a milder case of it. But since he still had no idea what it could be, he ordered a nerve conduction test and an EMG, which I had on Monday. They still haven't gotten back to me with the results and I have called them three times already. Hopefully, they will finally give them to me today.

Does anyone have any thoughts or insight on the situation, or any idea as to what could be going on? Does this sound like a GBS variant to you? Thanks in advance, I really appreciate any help or insight.
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Dmom3005 (08-12-2012), rmschaver (08-11-2012)
Old 08-11-2012, 06:54 AM #5
glenntaj glenntaj is offline
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glenntaj glenntaj is offline
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Default Welcome to Neurotalk--

--and yes, both Guillain Barre syndrome and MS are distinct possibilities here, depending on what the MRI's and some other tests show (they really should be doing MRI's of your brain and upper spinal cord on a high Tesla machine, to really check for demyelination).

Guillain Barre is analogous to demyelinating disease of the peripheral, as opposed to the central, nervous system, and there are a number of variants, though tests that definitively lead to the diagnosis can be equivocal at times. And there is considerable variation as to the severity of the presentation.

See:

http://neuromuscular.wustl.edu/antibody/gbs.htm

http://www.nlm.nih.gov/medlineplus/m...sclerosis.html
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Old 08-11-2012, 09:41 AM #6
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Yes, GBS is different for people. Two of our friends had it. One had lasting effects and he was pretty much paralyzed to start with.
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Old 08-11-2012, 09:47 AM #7
BobShannon BobShannon is offline
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Default Yes

I can tell you this much...the quicker the better for GBS..the definitive test is for anti-bodies which requires a spinal tap. then IVIG or plasma exchange needs to be started as spoon as possible. I am shocked neuros didn't do a tap as soon as it was suspected. GBS is NOTHING to play around with.

I went through 6 months in hospitals all of which were treating me for GBS...then the next 2 1/2 years I have been relearning to walk. I am teh poster boy for the GBS/CIDP society. My videos online total in the hundreds. We have documented each and every things that has happened...you would not believe the files, pictures and videos we have. We have been running training seminars for folks including medical professionals for months now...
Bob Shannon
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Old 08-11-2012, 09:25 PM #8
Essie73 Essie73 is offline
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Thank you all so much for your responses as well as the links!

I've been reading up on MS, GBS and CIDP and am hoping to have some answers from the doctors soon. At this point I'm just waiting until Monday to get the nerve conduction and EMG results, then I'll be seeing a different neurologist for sure. The one I have been going to has been abysmal and doesn't seem care or listen, much less have a clue.

Bob, I'm so glad to hear that you're starting to walk unaided, that is wonderful news! And thank you for the invitation to join your group, I appreciate it... just sent you a request on facebook.
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