Jim-LA

Your Replies

  • January 9, 2014 at 4:17 am

    Craig, you seem to be a CIDPer like many of us here and I don’t think you are in competition with the kitchen cabinet-showroom guy. So why post the same threads multiple times?

    Ви розмовляєте російські?

    Do you follow Dr Shaoulian’s advice for CIDP (he is on the opposite coast from you)? He had some training from Dr Engel who I unsuccessfully tried to get in to see.

    Sounds like the vegan diet is working for you. Other members have reported success with it too. I cannot get into that for myself.

    I hope you DO get back into sports, even if not at the same level as before. I miss all the physical stuff I used to be able to do. I was a semi-professional tennis player before CIDP (and in my youth), now I only hit volleys from my wheelchair. I hope you get back on the cross-country footpaths running fast and hard again!

    January 8, 2014 at 12:32 am

    GSLM, I’m glad to hear you were able to make it to the ER. Too bad they did not provide a conclusive diagnosis.

    What hospital ER did you go to? I know of only two Miami hospitals that have experienced GBS/CIDP neurologists on staff. See my earlier posts in this thread: http://www.gbs-cidp.org/topic/cidp-doctor-in-miami

    Mount Sinai has two ER’s and the one at 4300 Alton Road is where their Neuroscience Center of Excellence is. They have GBS/CIDP specialists on staff there. If you need to go back into an ER before you see your doctor, maybe this is the better one.

    January 2, 2014 at 11:48 pm

    I have no experience with any doctors in JAX. The Mayo in Rochester seems to have the famous CIDP doctors. I hope a member with treatment experience in the JAX area will chime in. In case they don’t, I have heard favorably about a Dr A. Berger of the University of Florida here: http://ufhealthjax.org/directory/bio.aspx?id=1206

    December 31, 2013 at 10:54 pm

    I made the mistake of NOT going into ER when I came down with GBS/CIDP. I had more nerve damage as a result of waiting. My recommendation would be to go to the ER, tell them about your symptoms, and that you suspect a GBS attack. Request treatment on an urgent basis to stop the progression of nerve damage.

    What a hell of a way to have to spend New Year. I wish you better health in 2014 and please keep us updated as best you can.

    December 30, 2013 at 9:04 pm

    This may be the person you have already contacted, but in case not:
    Tamara Foxen
    Layfayette 70503
    337 371 7386
    tamara.foxen@gbs-cidp.org

    If there is a chance you can get a ride to Houston, there is a Center of Excellence there:
    UT Physicians Neurology Clinic
    6410 Fannin
    Suite 1014
    Houston, TX 66160
    http://www.utneurology.com
    Phone: 832-325-7080
    Appointments: Adult: Cynthia Johnson (Clinic Manager)
    Phone: 832-325-7438
    Email: cynthia.l.johnson@uth.tmc.edu

    December 30, 2013 at 3:12 am

    Learn about the Seattle trial here: http://www.seattlecca.org/clinical-trials/transplant-2260.cfm

    I think one of the keys is longevity. If the SCT demonstrates long-term permanent success, it will go to phase 3. I think the Seattle trial has a better chance of this due to its wider treatment criteria.

    I still plan to enroll in the Seattle trial if I can get past the financial blockades. 2014 should provide me with some answer$.

    December 30, 2013 at 1:18 am

    Both clinical trials are for Phase II. Chicago presently has a “study completion” date at end of 2014. Seattle has a “primary completion” date of mid 2014, the “study completion” would probably be a year later.

    I don’t think either trial will schedule a phase III until after they have sucessfully completed the phase II.

    December 29, 2013 at 10:47 pm

    A Transcutaneous Electrical Nerve Stimulation unit (TENS) is usually for localized use, as are pain patches.

    I have a TENS unit (28VDC, 2500 HZ) and had used it to help wake up my muscles after I was paralyzed by GBS/CIDP. It didn’t really seem to help me much, but my PT said it would help keep some tone in my muscles. I discontinued its use after a few months.

    My wife used the transdermal patches that contain Lidocaine for treatment of her chronic Fibromyalgia pain. She built up immunity to the patches over many months and discontinued using them. They were very expensive and we fought with her insurance to get coverage.

    She briefly tried a stronger patch, but had a bad reaction to it and stopped after only a few days. I don’t remember the name of it.

    Maybe you can share some specifics with the forum members about what you use to help with your pain? (but it might be best to post it under a different topic thread)

    December 29, 2013 at 10:09 pm

    Kirkly, I’m so sorry to hear about your plight, especially with what seems to be a lack of timely responses from your doctor. May I ask what city you live in? Perhaps our forum members can recommend other CIDP specialists in your area.

    Some CIDP sufferers have been helped by taking Alpha Lipoic Acid (ALA). This is a non-prescription dietary supplement that is available in the vitamin section of many stores. I use the following product and take 1200MG per day: http://www.supplementwarehouse.com/viewitem.asp?idproduct=162545

    A clinical trial was completed earlier this year in Oregon to exam how ALA treats CIDP. We are still waiting for the researchers to post their findings here:
    http://clinicaltrials.gov/ct2/show/NCT00962429?term=lipoic+acid&rank=13

    December 29, 2013 at 4:59 am

    I spent a little more time researching the CIDP-Aseptic Meningitis links. According to many posts on the NeuroTalk forums, Plasmapheresis is the treatment of choice for those where IVIg triggers Aseptic Meningitis. SCIg is the other treatment of choice. Perhaps you should consider getting a second opinion from a CIDP specialist?

    Your husband’s pain may be better controlled if the CIDP is treated more directly without triggering Aseptic Meningitis.

    December 29, 2013 at 3:40 am

    Pain seems to be fairly common with us GBS/CIDP sufferers. I’m lucky to not have had too much pain. Following is a summary of what some other members have reported:

    Some say 150 MG of Lyrica (Pregabalin) can do wonders for pain. This is similar to Gabapentin (Neurontin), but members believe they get better results with the Lyrica.

    Another member reported that this spray has helped greatly: http://www.amazon.com/Salonpas-Pain-Relieving-Spray-Ounce/dp/B00759WR7I/ref=pd_sim_hpc_18

    Fibromyalgia pain can sometimes be similar to CIDP pain and a new medicine called Savella (Milnacipran) has proved successful in reducing that pain: http://www.mayoclinic.com/health/milnacipran/AN02019

    A few members have looked into this device: http://www.gbs-cidp.org/topic/spinal-cord-stimulator

    According to what I just read on-line, Aseptic Meningitis is usually caused by viruses (e.g., enterovirus) and most people can recover from it. It does have implications for treatment with IVIg. SCIg is said to be a better alternative for those with Aseptic Meningitis AND suffering from CIDP. Please see the following publications for more information:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296420
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783

    Perhaps some of the above is worth exploring to help your husband better manage his pain and get treatment for his CIDP. I hope he can improve soon so you two can have a little more normality back in your lives.

    December 26, 2013 at 10:23 pm

    Adding a profile is optional. Some leave it blank. Some fill it in with a mini resume. Others just add an overview of their GBS/CIDP journey or condition. The choice is yours.

    I think the best way to use this forum is for research. To do research, you have three main choices:
    1. Browse the categories and topics listed in the forums, and then read the threads that look interesting to you.
    2. Login, then “Search” for forum threads by keyword on the main forums page. Use the Search feature located just above the column titled “Freshness”, not the “search site” box in the upper right corner.
    3. The other way is to pick a category and start a new thread to ask a question. I would use this approach if I could not find what I was looking for in the existing threads.

    I often copy a keyword from a thread, open a new tab to the main forums page (or Google search) then paste and search. I sometimes have 5-10 tabs open at once as I bounce around doing research.

    Hope you find info that helps you!

    December 24, 2013 at 8:53 pm

    GSLM, If you become serious about SCT, you may find Alice’s website of interest: http://www.alicedicroce.com/index.html

    I saw you signed up at the CIDP Survivors group. Its great that you are diligently educating yourself about the disease!

    I wish you the best!

    December 24, 2013 at 8:23 pm

    Plasmapheresis versus IVIg/SCIg
    From my non-medical view, the bad (GBS/CIDP) antibodies are already in your bloodstream while you are being treated with IVIG/SCIg. IVIG stops your auto-immune system from releasing more into the blood stream, but it does little or nothing to kill the bad guys already released. Unlike IVIG, Plasmapheresis will remove (filter out) the bad guys from your blood stream, but won’t do much about stopping your system from producing more. One pass of Plasmapheresis won’t get all the bad guys because some are too deep in the veins at the time. Since the blood is always circulating, the bad guys will soon show themselves again and that is why Plasmapheresis works better after several treatments.

    PE can be summarized as the removal of units of whole blood anticoagulated with heparin followed by centrifugation to separate the blood into the cellular elements and plasma. The cellular elements are then mixed with a replacement for the discarded plasma and reinfused.

    Plasma Exchange helped me more than IVIG. I had approx 75 PE sessions over about 18 months, mostly outpatient. I noticed improvements 2-3 days after my first PE treatment. I never had any noticeable improvement with IVIG, although it may have helped limit the severity of my GBS/CIDP/MFS when I first came down with it.

    The outpatient PE exchange takes ~3 hours, longer if using a PICC line or other slower infusion method, and they replaced approx 4 quarts of fluids during each session, in my case. They will administer 4 to 6 bottles of the replacement plasma, depending on doctor recommendations. The fluids removed from my bloodstream were very gross (dark and dingy looking) when I first started, then changed to yellowish, and then became clearer towards the end.

    The PE always made me very sleepy and I was weaker when I left than when I started. I always slept well the night after. I started outpatient PE at twice per week for several weeks, than dropped to once per week. Then every other week, then every two weeks. I stopped for a few months then started up again at every 2-3 weeks.

    Prednisone
    I had many side affects after Prednisone took my immune system off-line. I got the typical puffy face plus diabetes, pneumonia, shingles, thin skin, cataracts, and a very rare fungal infection that required neurosurgery to remove (left me with vision loss in one eye).

    Other folks report tolerating Prednisone well. I recommend you discuss alternate immunosuppressants and cortisteriods like Imuran, Cellcept, etc. with your doctor before deciding what is best in your particular situation.

    December 24, 2013 at 7:15 pm

    The University of Miami Hospital and the Mount Sinai Medical Center have experience with GBS/CIDP, according to posts from other forum members:
    http://umiamihospital.com
    http://www.msmc.com