jk

Your Replies

  • jk
    July 1, 2014 at 4:41 pm

    Literally tons of tests, yet none whose results would change the recommended choice of treatment for CIDP. Refer to the GBS_CIDP webpage for more.

    http://www.gbs-cidp.org/home/cidp/cidp/

    According to one expert you would diagnose as follows:

    Diagnostic criteria — There is general agreement that the following criteria support the diagnosis of the classic form of CIDP:

    ●Progression over at least two months

    ●Weakness more than sensory symptoms

    ●Symmetric involvement of arms and legs

    ●Proximal muscles involved along with distal muscles

    ●Reduced deep tendon reflexes throughout

    ●Increased cerebrospinal fluid protein without pleocytosis

    ●Nerve conduction evidence of a demyelinating neuropathy

    ●Nerve biopsy evidence of segmental demyelination with or without inflammation

    for more on this you can click on-

    http://www.uptodate.com/contents/chronic-inflammatory-demyelinating-polyneuropathy-etiology-clinical-features-and-diagnosis

    good luck

    jk
    June 13, 2014 at 1:10 am

    Fortunately, I had very little sensory problems with my version of CIDP. I did not try paraffin baths. That’s way too much hassle for me.

    However, I did buy more than one of those electric bath foot heat, vibrate, massager thingees at garage sales. They do feel good. But, I am too lazy to fill and then pour out the water for what little benefit I gained.

    Try it, if it works for you, great.

    jk
    June 5, 2014 at 6:46 pm

    From the NIH: “…The standard IVIg dosage is a loading dose of 2.0 gm/kg administered intravenously over 2–5 days, followed by 1 g/kg over 1 day every 3 weeks.”

    Now 2.0 gm = 2 grams = 2,000 mg. My math is a little rusty, anybody double check- Let’s assume you are 90kg.
    Therefore 2,000mg times 90 = 180,000 mg. Are you sure the 900mg you reported is correct? Perhaps you mistyped/misremembered?

    One expert later told me, “You did not get enough (IVIG) often enough.”

    Let me think, I recall receiving about 50g per day each day for 5 days. 250g = 250,000 mg. Hmmm, so I weighed more than 90kg at that time!

    Following my initial 5 days dose I had an immediate response as measured by the p/t dynamometer (I have discussed this elsewhere). The doctor discounted the improvement as ‘random.’

    During this time I also received an ALS diagnosis. When I confronted the Dr, the reply was. “I don’t know what else to put on the form!!!”

    For more from the NIH- An update on the management of chronic inflammatory demyelinating polyneuropathy:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533/

    This study reports “…Patients with a progressive course or predominantly sensory deficits with tremor may be less likely to improve and, that 76% of IVIg-treated patients had improved strength [Mendell et al. 2001]. Improvement was noted as early as 10 days after therapy..

    Every case is different. Get yourself out of the hospital and into a neuromuscular Center of Excellence.

    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

    jk
    March 7, 2014 at 6:14 pm

    I also encourage you to go to a Center of Excellence.

    Specifically, you need to find a neuromuscular specialist. A run-of-the-mill neurologist does not meet this criteria. How did GH put it? “…experienced with acquired peripheral neuropathies generally.”

    In some cases, the nerve and muscle testing will neither rule in nor rule out CIDP. However, when the IVIG is effective there will be noticeable physical improvements, usually within 1-3 weeks, which may not last. EMG and Nerve conduction (NCV) velocity values may not immediately improve.

    Consider this: “IVIg has been introduced as the main therapy for CIDP over the last two decades. Multiple well-controlled studies have demonstrated that approximately 50–70% of patients respond to IVIg.”

    So, the conclusion could be drawn that 30-50% of patients do not respond to IVIG. You can read lots more simply by searching “cidp does not respond to ivig”

    For example- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635/

    You say you’ve had infusions for 7 months. How much IVIG and how often can make a difference in treatment outcomes.

    I’ve heard (or read) about people getting IVIG every week to maintain status quo and prevent progressive losses.

    I have not heard of vision problems with IVIG. If this only happens during or shortly after infusion be sure to check with your doctor and the Infusion center about the infusion rate prescribed for you. Huh? Some, less experienced, infusion centers will blast you as fast as possible to get you in out sooner.

    Good luck

    jk
    February 12, 2014 at 6:46 pm

    That’s good news. Congratulations. One lesson for all of us to learn from this is to try to find out our own test results. Perhaps too many doctors and too many patients accept the somewhat standard “All your tests are normal.”

    Some of my providers’ offices are now using on-line records, including Lab results. And, some of those providers’ workers have stated “It’s required by Medicare.” Regardless of the reason, some of this move to electronic record keeping benefits us in the end.

    jk
    February 7, 2014 at 1:56 pm

    Hello Jim-LA. Yes, the person referred to did have both of those tests, and many others. And, some of those tests were performed at GBS-CIDP Centers of Excellence. (go to one if you are able) All the test results were negative. Thank you for the links. Some patients and their doctors might consider a stem cell transplant to be too high risk.

    It’s been said on this web site before . (what was said before?) It turns out that a stem cell transplant is risky and that Each patient is different, and a treatment that’s good for one someone may be a poor choice for someone else have been said before.

    bny806- thanks for your input. With leukopenia it seems to be a trade-off between your personal tolerance for infection susceptibility and the choice of a suitable treatment.

    jk
    February 5, 2014 at 7:12 pm

    I read online about such a case. A patient with chronic inflammatory demyelinating polyneuropathy (CIDP) developed Evans syndrome (hemolytic anemia/thrombocytopenia) 17 months after onset of symptoms.