GBS relapses, residuals? When does it become CIDP?

    • Anonymous
      April 27, 2014 at 7:40 pm

      Hello all,

      I have posted on this forum before about my GBS/MFS diagnosis in January ’14, improved slightly since then but have been having a whole lot of new symptoms for a month or so. Here is a timeline (sorry for the length, I tried to keep it as brief as possible):

      Early/mid-December 2013:
      – Week-long case of flu/bad cold i.e sore throat, fever, aches & pains etc
      – approx. a week/ten days later, numbness in hands and feet followed by entire body

      Late December 2013
      – numbness in face: lips, inside of mouth, gums
      – altered sense of smell
      – fatigue and heavy feeling in limbs
      – weak legs (but still able to walk without assistance)
      – extremely cold feet in cold temperatures

      Early January 2014
      – increasing fatigue
      – dizzy spells
      – occasional “tight throat” feeling
      – loss of knee reflexes (they were still there on 05/01 and gone on 09/01)
      – GBS/MFS diagnosis (supported by presence of GQ1b antibodies)

      January – mid-March
      – altered vision in right eye: slight blurriness, intensified colours
      – numbness in face and body recedes to a certain extent, still very much there in hands and feet
      – bad fatigue

      Mid – Late March
      – vision: seeing translucid spots in right eye, followed by black spots over about 10 days
      – improvement in hand and feet numbness
      – improved energy levels

      Early April
      – headaches, mostly on right side of the head, occasionally top of head, sometimes whole head
      – inconstant numbness down right side of body including face (excluding lips)
      – pain in back of neck
      – nerve pain in fingers and toes

      – migraine with aura diagnosis
      – numbness in face (mainly lips) returns, but not as severely as in January, comes and goes
      – back pain (sometimes feeling like neck pain radiating down)
      – vision issues in the other eye (black spots, flashes, vertical lines in peripheral vision)
      – breathing problems (difficulty breathing in) but not severe
      – occasional “tight throat” feeling
      – inconstant and fleeting loss of sense of smell
      – “electric shocks” in left knee and right elbow
      – slight problems swallowing

      I was back in hospital for some tests in the first half of April, mainly because of the eye and headache issues. They did an MRI and nerve conduction test and told me I had hemiplegic migraine with aura that was unrelated to my MFS (which I find strange as I never had a migraine before and neither has anyone in my family). Triptans didn’t make much of a difference.

      They dismissed my constant “migraine” and other symptoms as stress-related, which I suppose *could* be true but at bit strange as I already have a neurological condition – wouldn’t it be more logical to at least wonder if they were correlated?

      At this point, I am starting to get worried. I know residuals can take a lot of time to throw off, but having brand new symptoms fours months in surely isn’t quite normal? I asked at the hospital about CIDP but was told that they would have seen it “in the lab results”. Not sure how that is possible – I thought CIDP only differed from GBS in duration?

      Would be interested to hear members’ points of view on this. My faith in doctors is rapidly eroding!

    • April 28, 2014 at 1:13 am

      When our autoimmune systems remember how to make antibodies that can attack “self”, we have a chronic form of Peripheral Neuropathy (PN). This is usually CIDP or one of its variants.

      GBS, usually a single event unless RGBS is involved, comes-on over a 2-4 week period, peaks, and then improves over several months. Residuals can last for years. CIDP can occur again multiple times over the course of years. Most doctors agree that CIDP is indicated when there are 2nd and 3rd attacks similar to the original GBS attack. The severity of additional attacks varies by individual and CIDP symptoms differ greatly between those of us afflicted.

      CIDP can usually be distinguished from GBS through the following tests:
      • Diminished or absent deep tendon reflexes.
      • A spinal tap, to analyze cerebrospinal fluid for elevated protein levels.
      • Complete Blood and urine tests.

      More info about CIDP can be found here:

      Regarding the headaches, did you have IVIg treatments? Although rare, it is possible to get Aseptic Meningitis, a type of brain inflammation with symptoms of severe headache, stiff neck, fatigue, fever, sensitivity to light, painful eye movements, nausea, and vomiting … from IVIg. One can get this from other sources too. More info here:

    • Anonymous
      April 28, 2014 at 8:53 pm

      Thanks for your answer Jim.

      No, I didn’t have any treatment at all. I’m rather worried that the eye and headache issues might be optic neuritis, which would open up a whole new can of worms. I didn’t know about ON when I was in the hospital, or I might have been a bit more vocal about challenging the migraine diagnosis. Time for a second opinion I think…

    • jk
      May 4, 2014 at 6:32 pm

      The link Jim gave is an excellent resource, one of many available directly from the GBS-CIDP organization.

      Above you said, ” I thought CIDP only differed from GBS in duration?

      According to some, the National Institutes of Health (NIH), for example, that is true- “CONCLUSIONS: The diagnosis of acute-onset chronic inflammatory demyelinating polyneuropathy (CIDP) should be considered when a patient thought to have Guillain-Barré syndrome deteriorates again after 8 weeks from onset or when deterioration occurs 3 times or more…”

      The medical establishment’s reply to your question, “they would have seen it “in the lab results”” sounds preposterous to me, nay it is beyond preposterous it is disingenuous at best, depending on their definition of “lab results.” Refer to Jim’s link above for an understanding of how CIDP is diagnosed.

      The standard disclaimer ‘everyone is different’ and the standard recommendation ‘seek a neuromuscular specialist’ particularly one at a GBS-CIDP center of excellence still apply. It is of paramount importance that EMG/NCV testing be performed and evaluated by an expert. Not any ole somebody who took a weekend seminar.

      My view of the television series ‘Mystery Diagnosis” is that the first 1-10 doctors, although perhaps well intentioned, never get the ‘correct’ diagnosis and we patients are too often content to heed their mistaken advice.

      good luck obtaining a definitive and accurate diagnosis with appropriate treatment

    • GH
      May 5, 2014 at 2:51 pm

      I don’t see what in particular you believe to be suggestive of CIDP. It is best not to fixate on a diagnosis which you have arrived at by yourself. Self-diagnosis is generallt wrong.

      If your doctors are having trouble reaching a definitive diagnosis and prescribing effective treatment, then it is reasonable to seek more expert diagnosis elsewhere, but you should recognize that there is considerable variation in symptoms and effectiveness of treatments in neuropathies. Uncertainty is inherent, so your doctors may be doing an excellent job of meeting the standards of care, yet still leave you feeling unsatisfied.

    • Anonymous
      May 7, 2014 at 8:33 am

      Thanks for your answers.

      I am not attempting to self-diagnose. I did not go into details of my hospitalisation as I don’t think anyone is interested, but suffice to say my primary care doctor was not satisfied either and referred me for a second opinion. The reason I ask about CIDP is quite simply because of the link with GBS (my first diagnosis).

    • GH
      May 7, 2014 at 3:53 pm

      And what was the second opinion? Does a neurologist think you have CIDP?

    • Anonymous
      May 7, 2014 at 9:33 pm

      Seeing a neurologist in two weeks time!