jk

Your Replies

  • jk
    August 1, 2015 at 11:35 am

    To follow up on Jim’s post- The NorthWestern Study Requires:

    “Criteria- Inclusion criteria: Definite CIDP according to the EFNS / PNS criteria (section 3.2.4c) AND Clinically typical or atypical CIDP (section 3.2.4 b)”

    GBS patients are not a candidate for this study. In addition, this is a Phase II trial. Reckon that means participants will be double blinded. As in you may not get the real thing.

    Want a real answer? Call them.

    https://clinicaltrials.gov/ct2/show/NCT00278629?term=cidp&rank=23

    jk
    August 1, 2015 at 11:17 am

    Jim, you already know visitation is down since last year and has stayed down. It’s too bad.

    Nay, it’s a crying shame. I, for one will not enter a site with an expired certificate warning that the site may have been hacked.

    I did send them an e-mail from a good certificate portion of the site.

    jk
    August 1, 2015 at 11:14 am

    Gather as many as you can at one time. Explain that your condition is very similar to ALS. Use Lou Gehrig’s name.

    They might start to listen. It’s sad but it is human nature that some people cannot open their minds and hearts to empathize with anyone else. Of course, some do a good job.

    Consider how all the IED blasted, limb missing Vets, Agent Orange Vets (on and on) are ignored.

    You still look healthy. I’ve gone through this for 45 years. My 2nd wife gets it. No one else, kids included has a clue. they are incapable of grasping it.

    Explain again and again. Good luck.

    jk
    July 16, 2015 at 10:21 am

    The CDC says- “Nasopharyngeal specimens were positive for rhinovirus/enterovirus in six out of eight patients that were tested. Of the six positive specimens, four were typed as EV-D68, and the other two are pending typing results. Testing of other specimens is still in process. Eight out of nine children have been confirmed to be up to date on polio vaccinations. Epidemiologic and laboratory investigations of these cases are ongoing.”

    And there is this from the CDC regarding non-polio enterovirus- “Prevention & Treatment There is no vaccine to protect you from non-polio enterovirus infection.”

    jk
    July 13, 2015 at 6:58 pm

    You say that your mom has gone a long time without the correct treatment? How long?

    Axonal regeneration and muscle tissue recovery are time dependent. And, of course, recovery is reliant on the damage causing insult being stopped. Most cases of CIDP are unique. Treatment may need to be on-going.

    Here is a partial answer to your initial question: “At the point of injury there will be either focal slowing or a sudden change in the waveform configuration. A good-quality EMG report should always include the actual waveforms of sensory, motor, and F wave tests. This is in addition to the numerical data that are usually included. The exclusion of this prevents a more complete interpretation of the report.”

    You may read all about it here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504120/

    On the other hand, I know from experience that fasiculations are observable and do not require any testing. Fasiculations can be an indicator nerve damage.

    jk
    June 1, 2015 at 7:54 pm

    Yes, I have heard of it. But…. There are too many variables including:

    1. Type of CIDP.
    2. time elapsed prior to diagnosis.
    3. time elapsed and type(s) of treatment.
    4. degree and extent of axonal damage- Related to 1 and 2 and 3 above.

    Anyway, no such thing as ‘permanent.’ At least not if you are still kicking.

    I have also heard of other, less positive, outcomes. For example, one study’s outcome includes this: “patients with a relapsing-remitting course with a drug-free period ranging from 6 months to 20 years”

    I suppose the patient who went 20 years prior to relapse initially thought their remission was permanent.

    jk
    April 27, 2015 at 8:13 pm

    I reckon GH put into words along the lines of what I was thinking, but did not speak out, when he said it seems to him that you are not getting very good support.

    This Foundation lists locations of 23 so-called Centers of Excellence. Maybe you can get to one. Mayo Clinic (Rochester, Minn) is one of them and it is a great place. If you are still being seen there you are lucky.

    The Clinical Trial for Stem Cell Transplant (SCT) is still recruiting with a list of inclusion and exclusion criteria. Age greater than 65 and a Prior history of malignancy are two exclusions. However, there have been case-by-case exceptions.

    A doctor at Mayo Clinic Rochester commented to me that he felt the Stem Cell transplant was rather like using a nuclear bomb on an ant hill. Yet, he doesn’t have to live with and deal with the chronic (never ending and inexorable) decline some unlucky CIDP patients experience. There used to be those on this forum stating unequivocally that the STC helped them. Seems like they were laughed off the forum. Too bad.

    My own experience with home based IVIG infusions was a nightmare. First of all, Medicare has specific disability (homebound) criteria that must be met. Those criteria include “If a patient has an illness or injury and a normal inability to leave the home or it is a taxing effort to leave their home, they may qualify. A patient is considered homebound if it is a taxing effort to leave their home and they have any of the following (omitted) and In addition, there must be a medical necessity for the services provided, and the services must be given under a physician’s Plan of Care.”

    Perhaps you meet those criteria.

    Secondly and Far Worse is the lack of suitably trained IVIG infusion certified nurses to come to your home. You cannot have a just out of needle sticking school someone who knows nothing about IV line size and drip rates, yet alone what to do if you get an infiltrated IV. Or, if you start to have a medical reaction. Or how expensive the liquid is. I once had every available ‘sticker’ from the home care company fail to get a good stick after an infiltration. Their answer? “Oh, you have to throw the rest of this away.” Yeah, right, not my $8,000 worth.

    And then, add IVIG shipping and refrigeration problems on top of that.

    If your doctor were really familiar with infusing IVIG, picking a company would not be a concern. It would be part and parcel of his written prescription.

    You stated “they seem to want to do it at home.” Who is they? Well, it’s irrelevant if the doctor sends you to an infusion center.

    Return to you are not getting very good support.

    jk
    April 27, 2015 at 1:20 pm

    bill,

    If the Mayo doctor did not diagnose CIDP, ‘He used different words never GBS or CIDP’ it is a good idea to have a Neurologist familiar with CIDP run a new set of the EMG and NCV tests because they are often used together to help obtain an accurate diagnosis. There are other conditions and all of them need to be either ruled in or ruled out, if possible.

    Some on this site have suggested taking this report to your doctor. Doesn’t hurt to read and understand it yourself either.

    http://emedicine.medscape.com/article/1172965-overview

    Best of luck to you.

    jk
    April 1, 2015 at 9:33 pm

    It seems to me that a ‘standard’ recommended loading dose of IVIG for CIDP was 2g/kg over 2 to 5 days. So, let’s say you are 75kg (165 lbs). Hence 2*75 = 150g.

    However, the headache part, in my experience, had more to do with the infusion rate and hydration levels than with the levels of Benadryl or Tylenol. Drink water and more water the day before and every day during infusion. At least, that helped me.

    Equally important, is reigning in the nurse(s) desire to get in you quickly and get you out the door quickly. Your doctor should have specified an infusion rate in the initial order. Ask the nurse to see the order. If necessary, call your doctor.

    The Octagam product information sheet lists one suggested infusion rate as: “Administration OCTAGAM 10% [100 mg/mL] should be infused intravenously at an initial rate of 0.6 to 1.2 mL/kg/hour for 30 minutes. If well tolerated, the rate of administration may gradually be increased to a maximum of 7.2 mL/kg/hour.”

    Therefore, the initial rate, for a 75 kg person would be in the range of 0.6*75 to 1.2*75 or 45ml to 90 ml per hour.

    Personally, I was never able to go that high. Flushing was the first warning sign for me.

    Ultimately, the infusion tubing size determines the drip rate and it might behoove you to find out what tubing and what drip rate, that is the number of drops you see falling from the bottle into the tube each minute compared to the doctor’s order.

    Edited to add: It is common now to use electronic infusion pumps. These pumps offer much better control than the old style compression tubing squeeze fitting.

    Of course, every situation and person is unique. If, by a rate of 150, you mean 150 ml per hour there is no chance I would have tolerated that. It sounds as if you don’t tolerate it either.

    However, the headache could have entirely other causes. Please check with your doctor.

    jk
    March 27, 2015 at 10:30 pm

    Treacle? I had to look that one up. Must be a UK thing. The UK has a support group.

    http://www.gaincharity.org.uk/

    CIDP has specific features that an ‘unaware’ EMG/NCV tester may not recognize. And, it is unlikely a patient would understand them either. This is particularly true in the less common variations. In my case “they” missed (at least) the “Absent or prolonged F wave latencies” described by Dr. Lewis. And, nobody mentioned the fasciculations (muscle twitching) for years. Wikipedia says: “Fasciculations arise as a result of spontaneous depolarization of a lower motor neuron leading to the synchronous contraction of all the skeletal muscle fibers within a single motor unit.”

    The muscles will look as if they are shaking. These are not major cramps. They are little twitches that do not go away over time.

    Dr. Lewis discusses EMG/NCV test findings here: http://emedicine.medscape.com/article/1172965-workup#a0721

    In addition, there may other blood, lab, and even genetic testing to be done to exclude other conditions.

    I suggest, and did do it myself, finding a neuromuscular specialist. In my case, it was at one of the Center’s of Excellence recommended elsewhere on this website.

    Please study the entire Dr Lewis report. It is over 9 pages long and includes a page on differential diagnoses.

    jk
    March 26, 2015 at 9:55 am

    CIDP has some generally accepted diagnostic criteria including clinical presentation, spinal fluid analysis and EMG/NCV. As noted, each case of CIDP has it’s own variations.

    In my own case, I was ‘misdiagnosed’ with carpal tunnel and, possibly cubital tunnel. I subsequently underwent some useless surgeries.

    Here is a good description on CIDP courtesy of Dr. Lewis: “Signs and symptoms- CIDP typically starts insidiously and evolves slowly, in either a slowly progressive or a relapsing manner, with partial or complete recovery between recurrences; periods of worsening and improvement usually last weeks or months. Most experts consider the necessary duration of symptoms to be greater than 8 weeks for the diagnosis of CIDP to be made.”

    It takes someone familiar with CIDP, and it’s variations, to make an accurate diagnosis. Sensory symptoms are common, such as tingling and numbness of hands and feet, but usually motor symptoms predominate.

    Again, from Dr. Lewis, “EMG is a critical test to determine whether the disorder is truly a peripheral neuropathy and whether the neuropathy is demyelinating.” And, “Sensory symptoms are common, such as tingling and numbness of hands and feet, but usually motor symptoms predominate..”

    Here’s my laypersons take- sensory nerves are smaller, they go first, thus the tingling, numbing and burning sensations. Motor nerves are larger and it takes longer for the myelin sheath and then axonal damage to occur.

    Do yourself a favor, ask your neurologist about their experience with CIDP.

    jk
    March 19, 2015 at 8:10 pm

    hiba24, So sorry to read this news about your father. I noticed you said “here in the uk cidp is quite rare.” There is a support group in the UK, maybe you know of it.

    http://www.gaincharity.org.uk/

    do not let the ‘gain’ discourage you. It seems to stand for Guillain-Barré Associated Inflammatory Neuropathies

    It is certainly discouraging to be in the minority and get the disease, even worse to respond so poorly or not at all. Some studies suggest that some patients still have severe disability (unable to walk) or treatment dependent relapses no matter which treatment regimen they are given.

    I hope you find a treatment program that works for your father.

    jk
    March 18, 2015 at 6:26 pm

    I’ve never heard of that either. At least in conjunction with CIDP.

    Having said that, there is this: “Refined grains are high-glycemic, meaning they have a dramatic impact on your blood sugar. According to the Neuropathy Association, glycemic control is the No. 1 strategy for preventing the progression of neuropathy associated with diabetes, which is one of the most common causes.”

    And then, “According to the Mayo Clinic, a healthy diet may help prevent or reduce symptoms of neuropathy for those at greatest risk.” Vitamin B-Rich Foods for example.

    Reckon this means to make sure your blood sugar is under control. Check with your doctor on other things to look for that cause peripheral neuropathy.

    There are probably peripheral neuropathy support groups in your area. For more on neuropathy resources go here:

    http://www.neuropathy.org/site/PageServer

    jk
    March 16, 2015 at 9:58 pm

    I have back pain. I also have CIDP. In my opinion, and only for whatever that is worth, there is absolutely no correlation between my back pain and my CIDP. With the exception of the low back fatigue my bilateral foot drop causes.

    NINDS, the National Institute of Neurological Disorders and Stroke says this about CIDP: “What is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?

    Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.”

    There is no mention of back pain in that discussion. Of course, every case is different. However, the nerve damage caused by CIDP usually does not affect the torso.

    There is a 2010 website link from a GBS-CIDP forum user (yes, the link still works) back in 2010 to this article by Dr. Richard Lewis. Dr. Lewis is considered an expert on CIDP. The user suggested printing this article to give to your doctor.

    http://emedicine.medscape.com/article/1172965-overview

    don’t overlook the next section link at the bottom of each page. There at least 9 pages of wonderful information.

    Your comment about “cidp is not on most doctors (even most neurologists) radar” is accurate. Do yourself a favor and find a doctor who has years of radar with CIDP. This website lists several Centers of Excellence. I would do whatever it took to get to one.

    Don’t delay. It is diagnosis time as GH stated. Some damage from CIDP is irreversible and takes place over time. Time you don’t have.

    jk
    March 14, 2015 at 9:37 pm

    When you say “despite my autoimmune problems (type 1 DM, )” What is DM an acronym for? Type 1 Diabetes Mellitus, maybe?

    In that case, there is a chance that you may have diabetic related peripheral neuropathies having nothing to do with CIDP. Neuropathies for which IVIG is not known to help.

    The NDIC, National Diabetes Information Clearinghouse has a good discussion on

      Diabetic Neuropathies: The Nerve Damage of Diabetes

    http://diabetes.niddk.nih.gov/dm/pubs/neuropathies/