GH

Your Replies

  • GH
    April 24, 2012 at 6:18 pm

    Except that the original post counts, too. You represented one voice when you made the original post, even had you not replied later on.

    GH
    April 24, 2012 at 5:34 pm

    A “voice” is just a member of the forum, so all of your posts in one thread amount to one “voice” for that thread.

    GH
    April 22, 2012 at 11:26 pm

    In my case, the neurologist ordered a complete spinal MRI to rule out other causes. Would spinal surgery ever be done without this?

    GH
    April 20, 2012 at 2:22 am

    It’s good to read that you are looking at the positive side. I don’t think you should give up hope on further improvement. This can take a long time. I thought my hands had reached maximum recovery, as I no longer notice any improvement. But a friend who hadn’t seen me in a few months told me they looked better. In any case, one must do the best with what one has. I, too, can do almost anything I want or need to do, and that’s the main thing.

    GH
    April 18, 2012 at 2:39 pm

    “Everyone is different.”

    True, that. With regard to shingles, there is some evidence that GBS can be triggered by the virus, but the virus is already within you, but dormant. The vaccine for shingles is a live-virus type. I have not taken it for that reason, as I am on an immune system suppressant (for CIDP).

    GH
    April 17, 2012 at 4:49 pm

    brendale, the reasons for relapse cannot be understood from the brief description given by Barbara Watts. Parry and Steinberg give three cases in their book, which must be distinguished:

    1. true relapse of GBS (rare)
    2. recurrence of symptoms, but without a renewed GBS attack on the nerves
    3. misdiagnosis of CIDP as GBS

    GH
    April 15, 2012 at 7:27 pm

    Took, you should probably start a new thread for this, but hete’s the word on Cymbalta from the NIH:

    http://www.nlm.nih.gov/medlineplus/druginfo/meds/a604030.html

    I’ve never taken it, and refused all antidepressants while hospitalized. I have constant neuropathic pain and I just live with it.

    GH
    April 9, 2012 at 11:17 pm

    If you can run at all, I’d say that’s an excellent recovery! I walk without a cane now, but wouldn’t think of trying to jog. I use a bicycle on a training stand at home to exercize my legs. It’s the only way I can move fast enough to get my heart rate up.

    GH
    April 9, 2012 at 8:02 am

    It might be due to an interaction with medications.

    GH
    April 9, 2012 at 4:16 am

    The compensation fund, by the way, has a political aspect. It’s purpose is to increase vaccination rates, to compensate people who MAY have been injured by a vaccine in furtherance of that purpose, and to avoid costly litigation. This program is justifed in awarding compensation even when the causality is only speculative.

    I don’t have any problem with the compensation fund. I think everyone should be covered for catastrophic illness, anyway.

    GH
    April 9, 2012 at 4:05 am

    Dawn Kevie’s mom:

    A prior history of GBS is considered by the CDC to be a contraindication for the live, attenuated influenza vaccine, but only a precaution for the inactivated influenza vaccine.  It is also a contraindication for meningococcal vaccines (Menactra), however it is still allowed for certain persons at high risk.

    If someone is saying Menactra is “known to cause GBS,” that is an exaggeration.  It is listed as a contraindication because of associations reported through the Vaccine Adverse Event Reporting System, as a precaution.  Here is the statement on Menactra from the FDA:

    http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm152369.htm

    Excerpt from linked document:

    “While the cases reported suggest a small increased risk of GBS following immunization with Menactra, the limitations in VAERS, and the uncertainty regarding background incidence rates for GBS require that these findings be viewed with caution. At this time, CDC and FDA cannot determine with certainty whether Menactra does increase the risk of GBS in persons who receive the vaccine and, if so, to what degree. …”

    Perhaps it seems like I’m nit-picking, but I think it better to refer to the official statements from the CDC, FDA, and NIH, for consistency.  Then, of course, to discuss these statements with your personal physician if you are considering whether to take a particular vaccine or not.

    My degrees are both Computer Science.  In some universities this is an Arts and Sciences degree instead of Engineering.  Most people who call themselves “Software Engineer” are not degreed engineers at all, or CS A&S.  

    The computer field is much more crowded today than when I entered it.  I’m not sure if the opportunities are as good as they used to be.  The main thing, however, is to choose the discipline in which one has the most interest and talent.  Mechanical Engineering will not have the problem of unqualified people calling themselves “engineer.”  I wish your son the best of success in his chosen field.

    GH

    GH
    April 8, 2012 at 9:48 am

    I don’t think you are insensitive at all, and thanks for the input.

    GH
    April 8, 2012 at 9:03 am

    Emilys_mom:

    Your remark is inaccurate.  I do not say people are wrong for believing that their GBS was caused by a vaccine.  If you review the posts above, you will find that I wrote to Haynes that he may be right on that point.  I do not know the cause of GBS or CIDP for anyone, and do not presume to diagnose anyone else’s medical condition or to give medical advice.  All I do on the question of causality is to call attention to the statements of the Centers for Disease Control and Prevention, the Institute of Medicine, and other similar bodies.  This is consistent with the mission of the Foundation to “heighten awareness and improve the understanding and treatment of GBS, CIDP and variants.”

    It does not matter what the cause of any particular case of GBS actually is, or what anyone believes is the cause, because the treatment and prognosis are the same, and because those who suffer from peripheral neuropathy deserve the same care and sympathy whatever the cause of their ailment.

    That does not mean that differences of opinion should not be expressed, particularly when the facts are misstated, and where this could lead to conclusions which are harmful to others, as this would be contrary to the mission of the Foundation.  It is in the nature of an open forum that differences will arise and be expressed, and people who participate should expect this.  I make an effort to express my differences politely, and if others are “upset” as you say by a mere difference of opinion, then I see it as their problem, due to unreasonable expectations of a public forum.

    Others are not so polite.  In this thread Haynes has accused me of being on someone’s payroll merely for expressing a different point of view.  This is offensive, but I shrug it off as it means nothing when it has no basis in fact.  More offensive, however, is that he has impugned the integrity of the many medical researchers who work on vaccines by implying that they are in it for the money rather than out of a sincere desire to contribute to the betterment of the human condition.  I find it an odd standard that allows many dedicated medical professionals to be maligned indiscriminately while objecting to statements which offend merely for being contrary.

    By the way, the JAMA article to which you linked was linked by me in a recent thread in this forum.  I found it interesting because it offers an explanation for the 1976 anomaly.  The report is the work only of its authors, not the AMA.  In any case, its conclusions are consistent with those of the Institute of Medicine.  I do not draw my own conclusions on this subject — I defer to the IOM.       

    GH
    April 7, 2012 at 9:55 pm

    Haynes, that is a question better directed to the Health Resources and Services Administration.  Here are a couple of links to help you.

    A statement from the HRSA in the Federal Register: 

    https://www.federalregister.gov/articles/2011/04/08/2011-8395/national-vaccine-injury-compensation-program-statement-of-reasons-for-not-conducting-rule-making

    Institute of Medicine — Adverse Effects of Vaccines: Evidence and Causality: 

    http://www.iom.edu/Reports/2011/Adverse-Effects-of-Vaccines-Evidence-and-Causality.aspx

    A document from the HRSA-CDC Task Force on the 2011 IOM Report: 

    http://www.hrsa.gov/vaccinecompensation/taskforcedeliberations.pdf

    Quote from the preceding document:

    “The evidence is inadequate to accept or reject a causal relationship between influenza vaccine and GBS.”

    I am sure there are more documents to be found, but I can’t do everybody else’s homework.  Why don’t you find them and post links? 

    I will say that I support the National Vaccine Injury Compensation Program, and that GBS is certainly a condition which should be considered by the HRSA as a possible adverse effect.  

    GH
    April 7, 2012 at 6:09 pm

    No, i am not employed by any government agency or pharmaceutical company. I am retired and not employed by anyone, and have never been employed in any aspect of medicine. I am an engineer.

    It is not possible to say what illnesses a person would have contracted, had their past experiences been different. It is likewise not possible to say with certainty what caused any particular case of GBS or CIDP — there is no test for it — although there is a strong association with infection by campylobacter jejuni, so it is reasonable to infer causality when that pathogen is known to have been present.

    In the case of influenza, the connection is much less clear. There are a few thousand cases of GBS in the US each year, and many millions of doses of influenza vaccine administered each year, so many people who acquire GBS in any given year will have been vaccinated. Some of those cases of GBS will coincide in time with vaccination purely through chance — temporal coincidence is not proof of causality — so studies looking for a link between GBS and vaccination must determine whether the incidence is significantly different than that expected by chance.

    The possibility of a link between influenza, influenza vaccine, and GBS is looked at every year by health agencies in several countries. All studies, with the sole exception of those for the 1976 H1N1 vaccine in certain populations, give similar results: there is no significant difference in incidence of GBS between those who have been vaccinated for influenza and those who have not. If there is a causal relationship between an influenza vaccine and GBS, it is on the order of about one case per million vaccinations over what is expected by chance alone. You don’t have to take my word for this; I have posted links to several studies in this forum.

    So there are two possibilities which must be considered:

    1. There may be no causal relationship at all, as this is consistent with the incidence being the same for those vaccinated and those not vaccinated.

    2. There may be a causal relationship. This requires further explanation of two facts: first, that the vast majority of those vaccinated do not develop GBS; second, that those who are not vaccinated develop GBS at the same rate as those who are.

    Hypothesis two can be explained in this way: A very small segment of the population are susceptible to acquiring GBS from some strains of influenza, for reasons that are not known. Such persons may acquire GBS either from infection from the influenza virus or from a vaccine derived from the virus.

    If you have another explanation which supports hypothesis two, I invite you to state it.

    Despite the statistics, most people who develop GBS within a few weeks of receiving a vaccination will believe the vaccine caused it, whether that is true or not. This is understandable and harmless in itself, however there is a great potential for harm in other people concluding that, because some people (supposedly) have been harmed by a vaccine, therefore they should not be vaccinated or have their children vaccinated. This is an invalid and dangerous conclusion, yet some people reach it. Examples can be found in the older threads on this website. This has led to a decline in childhood vaccination in the US, to a resurgence in childhood diseases which were nearly eradicated by vaccination, such as Pertussis, and increased childhood mortality.

    So to sum up, believe what you like about the cause of your own case — it doesn’t matter — but misinformation about the safety of vaccination generally will get an argument from me.

    Respectfully, GH