Jim-LA

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  • Jim-LA
    December 24, 2013 at 4:36 am

    GSLM,

    The SCT program is controversial within the GBS/CIDP and neurology communities. I attended the GBS/CIDP conference in Los Angeles two months ago. The speaker was Dr Richard Lewis. Dr Lewis is a member of the GBS-CIDP Medical Advisory Board and a renowned researcher. He identified the “Lewis-Sumner” variant of GBS.

    I asked him what his take was on SCT. He is following the results but was skeptical of it being a lasting cure. The ‘bang for the big bucks’ (my words) may be overrated. There is a need to follow patients over a longer period of time (many years) to better understand the consequences.

    How long it may take the FDA to approve a complicated and controversial procedure such as SCT is anybody’s guess … and, to get our insurance companies to pay for it – well, that’s another story.

    Jim-LA
    December 24, 2013 at 4:04 am

    GBS took 7 days to render me unable to drive, in three more days I was not able to walk anymore. The night before I checked myself into the ER I fell and broke my toe. The only good thing for me was that I was unable to feel any pain from the broken toe due to the numbness from GBS.

    Jim-LA
    December 24, 2013 at 3:59 am

    Flu Shots
    Getting GBS/CIDP as a result of a flu shot is very a controversial issue. Neither side of the argument has proven their case conclusively. I’m a believer that a flu shot CAN trigger GBS/CIDP in some of us because none of us are alike and neither are our immune systems. I will never get another flu shot in my lifetime … I would rather come down with the flu than risk another outbreak of GBS/CIDP!

    I’m not sure the word remission is always appropriate for CIDP; it conjures a sense that one has conquered the disease. Maybe dormant is more descriptive. Once our auto-immune system has learned how to make the bad antibodies that contribute to GBS/CIDP, it can reproduce them again if triggered to do so.

    Lymphocytes (a type of white blood cell) occur in two forms: B cells, which produce antibodies, and T cells, which recognize foreign substances and process them for removal. Things go wrong when a foreign substance is introduced that resembles “self” and changes the immune system’s ability to discriminate between “self” and “non-self.” Flu shots introduce foreign substances in order to trigger the immune system to produce Lymphocites and other cells.

    Stem Cell transplant
    The stem cell transplant procedure (presently in several clinical trials in the US) targets the immune system by shutting it down with chemo-therapy type treatments. This also kills off the Lymphocytes that protect us against disease. Once the chemo has done its work and the bone marrow is no longer producing Lymphocytes (amongst other cells), our remaining blood cells are harvested, stem cells are captured from these and reintroduced (transplanted) into our bone marrow. This essentially re-boots the immune system and it must relearn how to protect us. The hope with this approach, and what the clinical trials are trying to prove, is that the re-booted immune system will NOT remember how to make GBS/CIDP.

    I looked into the procedures earlier this year for myself. I dialoged with a few people who have undergone it and talked with the Admins in three separate clinical trials. I don’t qualify for Dr Burt’s program in Chicago due to age, but I would qualify for Dr Georges’ program in Seattle. One of the things I learned was that my out of pocket cost with Medicare would be around $600K, this is because Medicare does not cover clinical trials (at least thru 2013). The affordable care act is changing Medicare’s coverage for clinical trials in 2014. I have forwarded the link to the new Medicare provisions to Dr Georges’ office so their finance department can look into the costs for me for next year.

    The costs to travel from California to Seattle, with my caregiver in tow, rent an apartment, and pay for all expenses, for a period of about 3 months, is not a trivial matter. Not to mention all the fun things like being sick all the time and losing my hair (due to the chemo). Then I would be the “boy in the bubble” for a year or more while my immune system is relearning how to protect me against all the every day bugs we take for granted our immune system will kill for us. And … there is “no guarantee” that it will even work for more than a year or two.

    For those that want to learn more about stem cell transplant, here are the two trials I applied for:
    http://www.clinicaltrials.gov/ct2/show/NCT00716066?term=NCT00716066&rank=1
    http://www.clinicaltrials.gov/ct2/show/NCT00278629?term=cidp&rank=16

    Urgency
    I circumvented all the doctor red tape (2-3 weeks worth) when I got GBS because I wanted treatment NOW: I checked myself in to the ER and was on IVIg in two days.

    Jim-LA
    December 23, 2013 at 3:49 am

    First thing is a good diagnosis so the doctors can confirm what you have. Once the diagnosis is complete, a treatment program can be put in place. Everyone responds differently to treatments and residual symptoms can last a very long time for some.

    Have you had nerve conduction and velocity tests? Did they test for elevated protein levels in your spinal fluid? Have you had any treatments with IVIg or Plasmapheresis? Are you taking any Immunosuppressant medications such as Prednisone?

    If you recently came down with symptoms, it may be GBS. GBS usually peaks in the first 2-4 weeks, and then gradually fades away over several months, or longer. Body functions return slowly over this time, but may not return to pre-GBS levels in some cases. GBS is not likely to reoccur after its initial attack (RGBS is extremely rare).

    CIDP may be suspected when GBS does not seem to fade away quickly enough. There are other diseases that contribute to peripheral neuropathy and your doctor must rule these out to confirm a diagnosis of CIDP. Immune-Mediated Small Fiber Neuropathy is a treatable condition that can mimic GBS or CIDP. Lewis-Sumner and MFS are other variants and symptoms can be very similar to CIDP.

    CIDP damages the Myelin sheath surrounding the nerve fibers. Myelin is like the insulation on electrical wire and without it; the nerve signals short out and don’t reach their destination. Myelin can grow back at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is extremely slow but there has been little that can be done to speed up the process. Unlike GBS, recovery from CIDP can be very slow and many of us never get back to where we were physically before being stricken with CIDP.

    There is a newer alternative to the traditional IVIg transfusion – Subcutaneously administered IVIg does not require an IV or a port and some patients can give it to themselves, lowering costs substantially. Use of this method would have less impact on your work schedule, maybe no impact if you can administer it yourself. Learn more about it here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783

    My CIDP has been in remission since 2009. Others on this forum have reported great progress on beating the disease and some feel cured. According to a recent survey only 5% of CIDP patients end up wheelchair bound. Put down those fiction books about CIDP horror stories and read the survey results here: http://www.gbs-cidp.org/topic/patients-survey-results-into-gbscidp

    It is normal for each of us to feel scared while not knowing exactly where the disease is taking us. I hope your anxiety lessens as you learn more about GBS/CIDP and the possible outcomes. I especially hope you get well quickly.

    Jim-LA
    December 23, 2013 at 1:34 am

    Dr. Ram Ayyar and Dr. Steven Resnick, both in Miami, have been recommended elsewhere in this forum. I have no first hand knowledge of either.

    Please contact your local GBS/CIDP Chapter office for doctor referrals here:
    Caroline Morrison
    Miami, FL 33133
    Phone – 305 498 3147
    Email – sunsetclm@earthlink.net

    I hope you get the best treatment available so you are fully in ‘recovery mode’ soon.

    Jim-LA
    December 22, 2013 at 8:44 pm

    I almost made that statistic. While hospitalized for GBS and undergoing breathing treatments, I went “Code Blue”. They rushed a team to my room to keep me alive. I remember uncontrollably loosing coconsciousness, and then everything went black. After they resuscitated me, I was very groggy and had no comprehension about what had just happened. All I can remember is seeing light and it got brighter as my brain began to function again. I was lucky the team acted so quickly to save my life.

    I’m saddened to hear your friend was not able to be kept alive.

    Jim-LA
    December 19, 2013 at 1:25 am

    Imuran (azathioprine) is currently being discussed here: http://www.gbs-cidp.org/topic/inmuran and there are other threads that talk about it too. You can view all the threads if you do a search from the main forums page.

    Here are two publications that address Imuran/Azathioprine, the 1st one also reviews Prednisone:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635
    http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682167.html

    Prednisone has been discussed here (and elsewhere if you do a search): http://www.gbs-cidp.org/topic/prednisone-2

    Here is a publication that addresses Prednisone: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601102.html

    Jim-LA
    December 15, 2013 at 2:44 am

    SPAM

    Jim-LA
    December 15, 2013 at 2:39 am

    I have friends who lived in Ireland several years while the husband attended graduate school. The wife had symptoms of a neurological disease and, while trying to get diagnosis and treatment, was confronted with all the red tape and delays of the health system. It took her 2-3 months before she could get treatments. My friend and his family have now moved back to the USA and the doctors here are questioning the diagnosis of Lupus that the Irish doctors gave his wife.

    I have no first hand knowledge of the Irish system, but I would say to expect delays.

    Jim-LA
    December 4, 2013 at 12:24 am

    Harry, I was on a high dose of Prednisone for about 18 months. I did experience a number of side affects, but none that you mention. I have not heard about anyone’s speech being affected by taking corticosteroids. Maybe you have a cold coming on that is starting to affect your throat?

    Numbness and tingling are very rare side affects of Prednisone. If you suspect this is Prednisone related, you should see your doctor right away.

    I think must of us probably over did it during Thanksgiving and need a little extra rest to help us get back to normal. Here’s hoping that is your case.

    Jim-LA
    December 1, 2013 at 9:08 pm

    Carliam,

    GBS is a very rare disease and getting it a second time from a cold is even rarer. There’s no reason to worry that a typical cold or sore throat is going to trigger an autoimmune response and lead to a recurrence of GBS. Colds, sore throats, and the occasional bout of diarrhea are fairly predictable parts of everyone’s lives before and after GBS.

    In the very, very unlikely event you get tingling or numbness in the hands or feet in next couple weeks following the cold, you should get a routine checkup by a GBS doctor.

    Jim-LA
    November 29, 2013 at 9:23 pm

    A doctor (Neurologist or otherwise) who has experience treating GBS/CIDP may or may not be a “specialist”. I think it is important to get treatment from an experienced practitioner, especially at the onset of the disease.

    I am paralyzed today because I didn’t have an experienced doctor when I was first diagnosed in the ER. The neurologist that got assigned to me had no prior hands-on experience treating GBS/CIDP patients. Had I been given the proper treatments immediately, I would be walking today.

    I am now a wheelchair bound paraplegic because I didn’t have a “specialist”. I believe the chances of improving your quality of life, while living with CIDP, are greatly enhanced by having a good specialist managing your care from the start.

    It is never too late to get a second opinion from an expert to make sure you know all the options and potential outcomes. The Centers of Excellence listed here http://www.gbs-cidp.org/home/get-support/centers-of-excellence have expert specialists who may be able to help improve your life. There is more hope for us CIDP sufferers in the proper hands of an expert.

    Jim-LA
    November 28, 2013 at 12:08 am

    I got Diabetes from taking Prednisone (one of the possible side affects of the drug). If you are just starting Prednisone, there is little need to test your blood sugar until after a few months.

    I have been off Prednisone since 2010, but still have Diabetes. I HATED pricking my fingers and never liked the devices that had that built-in.

    I started with the Acu-Chek system and my PPO insurance paid for it and the supplies (strips and needles). I didn’t like the way the Acu-Chek ‘pricked’ and ended up buying a TrueTrack because it had a separate pricker that had a very narrow replaceable needle and a better adjustment for depth. Medicare paid for the TrueTrack and its supplies.

    I started with the conventional insulin syringes and drew the insulin from a vial. I switched to a NovoLog FlexPen system (shorter and narrower needle) where you just dial the dosage and don’t have to worry about getting air in the mix, etc. Doctors seem to get NovoLog samples often and you might ask if your doctor has some.

    Fortunately, I don’t need to check my blood sugar daily anymore since I went on Metformin.

    Enjoy your Thanksgiving Meal!

    Jim-LA
    November 27, 2013 at 6:59 pm

    Helga, are you saying that you think your GBS is still active after 7 years? If so, it is probably CIDP. If not, it is not uncommon for many of us to have residual symptoms many years after the onset of GBS.

    A bad cold can, in very rare circumstances, trigger a recurrence of GBS-like symptoms. This is because the immune system has already learned how to make certain anti-bodies that could again wrongly attack the nerve fibers.

    I am 6 years post onset (GBS then CIDP/MFS) and still have paralysis, numbness and tingling. I had vision loss and got Diabetes from taking Prednisone. Surgery fixed my vision loss, but I am still diabetic. It took 2 years before I could use a computer again.

    You should see your neurologist if you think the disease has become active again. Perhaps s/he would recommend some treatments (IVIg, PE, etc) to help you get better.

    Jim-LA
    November 25, 2013 at 9:38 pm

    Did you read the 2012 GBS-CIDP Foundation article “Immune-Mediated Small Fiber Neuropathy: A Treatable Condition That Can Mimic GBS or CIDP” by Dr’s Saperstein and Levine? You can read it here (scroll down to page 7): http://www.gbs-cidp.org/wp-content/uploads/2012/07/Summer-2012-Medical-Newsletter.pdf

    There are also many forum discussions about it. Go to the main forum page and perform a search, then read through the member threads of interest to you. Here are a couple threads:
    http://www.gbs-cidp.org/topic/small-fiber-neuropathy
    http://www.gbs-cidp.org/topic/small-fiber-peripheral-neuropathy

    Hope this info helps.

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