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Neurology (Expert Forum)
What is this?
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What is this?
by James-Dailey, Nov 09, 1998 12:00AM
I've been diagnosed with GBS. It began 5 or 6 months ago after a camping trip, no viral infection preceeded that I knew about. First, my hands grew very weak, no tingling, just weak, then my legs, then the tingling began, this progressed for 8 weeks. I was then treated with IVIG with immediate and complete recovery of the symtoms, I went from not being able to walk to being 100% in 3 days treatment. Two months later the symptoms came back, this time it only took a week to progress to trouble walking. I again was treated with IVIG, this time the tingling stuck around for a while, maybe a week. Now, its been 6 weeks since my last treatment and again its coming back, tingling in hands first, now in my feet. Soon I won't be able to walk again.
Now as I understand it, many of these symptoms are not typical GBS. It took much longer than normal for the symptoms to advance, it cleared up much, much faster than normal and it keeps coming back after the IVIG treatment. I've never been ill and have a healthy family background. Other abnormalities that recently popped up after treatment(coincidence?) are bumps on my skin around hands that eventually peel off and form again on another part of hand, and a circle of dead skin (oozing rash) on my back about the size of a dime that a dermatologist gave me an ointment to get rid of. Another fact, there was an elevated protein level in a spinal tap.
My question, does this sound like GBS or have I been misdiagnosed? If it is GBS is there anything I can do to prevent another recurrence?
PLEASE help, this has effectively stoped my life for a week every 2 months and destroying my finances at 12 grand a treatment.
Doctor's Answer
by CCF Neuro MD MJD, Nov 09, 1998 12:00AM
_
Well, it's difficult to tell you exactly what this may be without a bit more history plus spinal tap results and EMG findings, but hopefully some information will help. Guillain Barre Syndrome is a problem with the peripheral nerves because of destruction of the myelin or coating of the nerve. By definition, Guillian Barre (GBS) progresses from start to nadir within four weeks. It causes weakness often in a pattern ascending from feet upward (but can progress in a number of ways), sensory complaints but not many sensory findings on exam, and loss of reflexes. It is typically a monophasic course - that is it worsens within 4 weeks then improves slowly but generally doesn't relapse. You describe an 8 week course of worsening which technically means not GBS. You ask if you have been misdiagnosed? The semantics may be the only problem here. There is a disorder called CIDP - Chronic Inflammatory Demyelinating Polyneuropathy - which like GBS affects the myelin coating on nerves - that again causes weakness, more frequently numbness and decreased/absent reflexes again with characteristic spinal tap and EMG findings. CIDP has worsening over 8 weeks and has a more variable course - some keep progressing, some improve slowly and do not recur, some relapse. Treatment for both GBS and CIDP can be similair - IVIg is effective in both. Oral Steroids are a mainstay of treatment in CIDP but not in GBS. Now you may note there is a middle group between the four weeks of Guillain Barre and the 8 week progression in CIDP - this is a middle group which is difficult to define - some have a single-phase course like GBS - others relapse like CIDP - and often it is difficult to tell how these patients should be treated and, importantly, what their prognosis will be. You may have fallen into this group - and so were difficult to define your syndrome - but now your course seems to have defined itself better and perhaps you do have CIDP - Ask your neurologist.
Now note that these syndromes - demyelinating neuropathies - have very clear features that your question did not address. The above answer is based on your exam and test findings, but since you were diagnosed with GBS, I'm assuming that your exam and results did suggest this. Be sure to ask your neurologist. But aside from the terminology - IVIG is used in both as first line treatment - there are other treatments available like oral steroids - if IVIg does not seem to be effective anymore. Again your neurologist would be the best person to discuss this with.
Well, it's difficult to tell you exactly what this may be without a bit more history plus spinal tap results and EMG findings, but hopefully some information will help. Guillain Barre Syndrome is a problem with the peripheral nerves because of destruction of the myelin or coating of the nerve. By definition, Guillian Barre (GBS) progresses from start to nadir within four weeks. It causes weakness often in a pattern ascending from feet upward (but can progress in a number of ways), sensory complaints but not many sensory findings on exam, and loss of reflexes. It is typically a monophasic course - that is it worsens within 4 weeks then improves slowly but generally doesn't relapse. You describe an 8 week course of worsening which technically means not GBS. You ask if you have been misdiagnosed? The semantics may be the only problem here. There is a disorder called CIDP - Chronic Inflammatory Demyelinating Polyneuropathy - which like GBS affects the myelin coating on nerves - that again causes weakness, more frequently numbness and decreased/absent reflexes again with characteristic spinal tap and EMG findings. CIDP has worsening over 8 weeks and has a more variable course - some keep progressing, some improve slowly and do not recur, some relapse. Treatment for both GBS and CIDP can be similair - IVIg is effective in both. Oral Steroids are a mainstay of treatment in CIDP but not in GBS. Now you may note there is a middle group between the four weeks of Guillain Barre and the 8 week progression in CIDP - this is a middle group which is difficult to define - some have a single-phase course like GBS - others relapse like CIDP - and often it is difficult to tell how these patients should be treated and, importantly, what their prognosis will be. You may have fallen into this group - and so were difficult to define your syndrome - but now your course seems to have defined itself better and perhaps you do have CIDP - Ask your neurologist.
Now note that these syndromes - demyelinating neuropathies - have very clear features that your question did not address. The above answer is based on your exam and test findings, but since you were diagnosed with GBS, I'm assuming that your exam and results did suggest this. Be sure to ask your neurologist. But aside from the terminology - IVIG is used in both as first line treatment - there are other treatments available like oral steroids - if IVIg does not seem to be effective anymore. Again your neurologist would be the best person to discuss this with.
