Your Replies

  • October 23, 2013 at 7:24 pm

    My neuro recommended not getting flu shots post GBS. Nobody knows with certainty that a flu shot will or will not trigger a new episode of GBS. I think it is prudent not to take the risk. Getting the flu and being miserable for a few weeks pales in comparison to getting a recurrence of GBS.

    October 22, 2013 at 7:22 pm

    Kennedy’s Disease is a geneticaly inherited, progressive muscular atrophy and treatments such as IVIG and PE don’t appear to have an affect. Learn more here: http://www.ninds.nih.gov/disorders/kennedys/kennedys.htm

    October 18, 2013 at 3:43 am

    A mediport type of device is placed under the skin and can last several years without needing to be replaced. Since it’s under the skin, you can take showers, baths, and go swimming (after the initial incisions have healed).

    The Port-A-Cath sounds like a good option for continuing IVIG treatments given your vein situation. The Port-A-Cath is a brand name made exclusively by: http://www.smiths-medical.com/catalog/implantable-ports/port-cath-implantable-venous.html

    I have used 4 different types of implanted central venous access ports, but not the mediport type. All of mine required periodic flushing with a Heparin-Saline solution to keep the blood from clotting and blocking the valve or catheter. Maintenance instructions for the Port-A-Cath can be found here: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=9&cad=rja&ved=0CF0QFjAI&url=http%3A%2F%2Fnursing.uchc.edu%2Finfection_control%2Fdocs%2FPort%2520Care%2520Patient%2520Education.pdf&ei=XZxgUujVMaPgiALj6oHYBA&usg=AFQjCNGuGrNMk4dnzA2SyKbkg_ht66DQ6g&bvm=bv.54934254,d.cGE

    My concerns would include: the number of needle pokes through the skin to access the “port” before the previous poke has healed, and if the skin might be prone to bruising. Consider having the nurse use a clock-dial approach to poking the needle so that the other poke points have a better chance to heal before being poked on again. If the needle pokes bother you, you can anesthetize the accessing skin area using Ethol Chloride spray, or cold spray. It should be sprayed as the needle is being placed or immediately before the needle is placed. If you tend to sleep on your stomach, or roll over frequently, you should probably have the device implanted in your arm to reduce the risk of discomfort and/or damage.

    Another option to consider would be subcutaneously administered IVIG. This is a newer option for those experiencing problems with traditional IV’s. Subcutaneously administered IVIG does not require a port and some patients can give it to themselves, lowering costs substantially. Learn more about it here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783

    October 17, 2013 at 3:27 am

    GH cited an excellent article that I hope you were able to read, I did.

    There is another, much rarer, form of GBS called Recurrent-GBS (RGBS): http://www.ncbi.nlm.nih.gov/pubmed/18931012

    RGBS was discussed at a GBS-CIDP Foundation meeting I attended last Saturday in LA. RGBS can require additional IVIG to lessen the severity of attack and to help the patient return to normal activities as soon as possible.

    Insurance companies can often be reluctant to see IVIG as a ‘clinical necessity’ because of its high cost factor. Getting IVIG in a hospital setting is probably the most expensive. Getting it in an outpatient clinic or through home healthcare are lower cost alternatives.

    I was given IVIG in the hospital as my first line of defense. It didn’t work well for me and I was then given Plasmapheresis, which worked very well for me. About 2 years later my neuro recommended another round of IVIG at home through a home healthcare provider. I stopped it after a couple months because it was having only negative affects for me.

    If you go the home healthcare route, make sure the agency is listed as a ‘contracted provider’ by your insurance and confirm the agency will take your insurance as payment in full.

    October 17, 2013 at 2:26 am

    Harry, I seem to recall in another of your posts that you work in construction. That can be very physically demanding work, especially for someone challenged with CIDP.

    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.

    I was stricken before retirement age and had to fight my way through several disability rejections before finally getting accepted. As soon as I hit retirement age I applied for social security.

    I had my own business consulting service before GBS/CIDP/MFS. I had told friends and family I would never retire, just take on fewer clients from time to time. I had just cut my work schedule to 2 weeks per month and joined a Tennis league, planning to play as often as I could (I was in good shape and used to play semi-professionally).

    Thanks to CIDP, I am now a wheelchair bound paraplegic and in complete forced retirement. I’m not a good example of a typical CIDP patient and I think most CIDP patients recover better than me and quite a few return to work.

    I hope your neuro is correct and you are able to return to the work that you enjoy.

    October 16, 2013 at 8:00 pm

    Home healthcare may be an option to consider. Ventilator-dependent patients can be treated at home through this approach. Your doctor must write prescriptions for the durable medical equipment, supplies, and the home healthcare services required. Medicare partially covers home healthcare of this type. Coverage may vary depending on what supplemental insurance your Dad has.

    The Medicare website is not being maintained due to the government shutdown, but here is a link to their home health pdf guide: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=1&cad=rja&ved=0CEkQFjAA&url=http%3A%2F%2Fwww.medicare.gov%2Fpubs%2Fpdf%2F10969.pdf&ei=feReUq0VybCJAre3gKAM&usg=AFQjCNEu033rX7W-n2QvuBa1C3GR3bYYlg&bvm=bv.54176721,d.cGE

    I have used 5 home healthcare agencies in the LA area (including 2 for IVIG) and can say that prices and services vary, as do the quality and quantity of equipment and supplies (they tend to give too many supplies so they can bill for them). You may wish to research home healthcare agencies in your area and provide a recommendation to your doctor (or he/she will use whatever agencies they have a relationship with).

    Here is a good article covering things to consider when transferring a ventilator-dependent patient to a home environment: http://www.medscape.com/viewarticle/514735_2

    I was on a ventilator for almost 3 weeks after getting GBS/CIDP/MFS. I could hear almost everything that was said around me, but couldn’t talk or feed myself. Then I was weaned off the ventilator and became able to breath on my own again. Feeding myself took several months longer and I was at risk of getting food in my lungs if I swallowed wrong. I had daily breathing treatments and exercises for nearly a year before I was back on my own.

    I hope your father recovers quickly.

    October 12, 2013 at 3:32 am

    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, except for the very expensive and experimental stem cell transplant treatment.

    I think you may be on the wrong track trying to find some non-scientific cure that rebuilds damaged Myelin. Many very bright scientists have been working on the problem for years and have been running clinical trials to test different treatment approaches.

    I’m not sure anyone on this forum would follow recommendations from a nurse who doesn’t seem to have a scientific grasp of CIDP in the first place. According to your post, it seems you don’t even know if you have CIDP and have no confirmation from a specialist, nor have you sought any of the proven treatments for CIDP.

    B12 and Alpha Lipoic Acid may be some of the only non-prescription supplements that have a fair chance of helping some CIDP sufferers. Newer prescription drugs like Dalfampridine and time-proven treatments like IVIG or Plasmapheresis are much more likely to help treat CIDP than the supplements you suggest.

    Posting your experimental home remedies under “success stories” is misleading to forum readers in my opinion.

    October 12, 2013 at 2:38 am

    Have you called the GBS-CIDP Connecticut chapter for a local referral? There are several folks that may be able to help you find a new CIDP specialist without having to drive into Boston:
    Alberta Amaro – Windsor Locks – 860 623 5893
    George Evanick – Canton – 860 693 2922
    Dorine Russo – Avon – 860 404 8916
    Sibylle DeRosa – New Canaan – 203 966 0085

    Hopefully one of these folks can provide you with a good referral or two.

    October 8, 2013 at 10:48 pm

    The results of the most recent clinical trial using Rituxan to treat some forms of GBS can be read here: http://www.neurology.org/content/80/24/2217.abstract

    These results may or may not apply in your case, depending on the form of GBS/CIDP and variants you may have. One of our forum members reported success using Rituxan just last month. You can perform a forum search and find all posts related to Rituxan.

    October 7, 2013 at 3:04 am

    I too miss getting a relaxing foot or leg massage!

    My nerves are so jumbled now, due to Myelin damage, that I experience pain whenever my feet are even washed and dried. Physical therapy on my feet or calves causes the same painful reaction and I often involuntarily try to pull my foot/leg away.

    My hands are still numb and tingly and I do not have the strength I had prior to GBS/CIDP. But I can feel someone applying pressure to my hands these days.

    I hope your sensory situation improves so you can once again enjoy the massages!

    October 5, 2013 at 1:28 am

    One thing that seems typical about GBS is that none of us seem to have the exact same symptoms and residuals. Nor do we all heal at the same rate or respond to treatments in the same way.

    Because of the wide variety of GBS disorders and our individual body’s ability to fight off these various forms of GBS, each of us ends up with different levels of left over symptoms.

    You are quite fortunate to have the ‘residuals’ you have stated. Some of us have considerably worse symptoms and have been dealing with them for much longer periods of time.

    I’m not too sure that all GBS nerve damage can be completely reversed, maybe for a few. Maybe I’m overly pessimistic, but it’s more likely that we won’t fully regain ALL the abilities we had before GBS. I have experienced a great deal of improvement since 2008, but still have tingling and numbness from head to toe.

    Many sufferers still have pain many months and years post-GBS. I’m fortunate to not have had much pain at all; others can have bouts of bad pain.

    The flare ups you mention could be the result of your nerves reconnecting as the Myelin are being rebuilt. It could also mean that you may have a more chronic version of GBS or one of its variants.

    Symptoms of GBS often start with tingling or numbness in the extremities of the body. The hands, feet, and face are often affected first.

    People with GBS suffer from a wide range of symptoms that may include:
    – weakness in leg, arm, and facial muscles
    – tingling, numbness, creepy/crawly feelings
    – problems with speech and swallowing
    – pain in the muscles of the back
    – shortness of breath
    – decreased ability to move the eyes

    Symptoms typically progress over a period of a few days and are usually at their worst 2 weeks after onset. Then they slowly decrease over time. According to the NIH, about 30 percent of those with Guillain-Barré still have a residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack. Ref: http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm

    You didn’t mention what treatments you were given for your GBS. Did you have IVIG? Plasmapheresis? Take medicines like Prednisone? Did they test for elevated protein levels in your spinal fluid? How all this was dealt with might provide some insight into whether you have something other than GBS.

    October 1, 2013 at 1:37 am

    The GBS-CIDP Foundation has a chapter in Victoria and maybe they can provide some referrals. Contact info:
    Melva Behr
    Beaconsfield, Victoria
    03 9707 3278
    Email: behrsden@optusnet.com.au
    Website: http://www.ingroup.org.au

    September 30, 2013 at 11:33 pm

    If you don’t mind a 9 hour drive to Dusseldorf, Germany, there is a “center of excellence” there. Details here: http://www.gbs-cidp.org/home/get-support/centers-of-excellence

    Ventura is close to Los Angeles and there are two “centers of excellence” a few miles from each other. Drive time from Ventura to either UCLA or Cedars (Cedars is where my Neuro is located) is approx 90 minutes.

    September 30, 2013 at 7:31 pm

    According to WebMD, Endip belongs to a class of medications called tricyclic antidepressants. It may be used to help alleviate symptoms associated with GBS, but does not appear to treat GBS itself. I think a good Neuro who is experienced with GBS/CIDP should be involved, if for no other reason than to provide a 2nd opinion.

    I tend to agree with GH that it sounds like you might have the chronic form of GBS called CIDP, or one of its variants. There are other tests that can help determine GBS, CIDP and a good Neuro would know how to administer them for proper results.

    Are you near one of the “centers of excellence” listed here: http://www.gbs-cidp.org/home/get-support/centers-of-excellence ?

    September 27, 2013 at 2:56 am

    If you meet the age requirements, there is typically a 5 month waiting period (unpaid) in order to qualify for SSA Disability and you must meet ‘blue book’ criteria. The blue book contains a list of “severe” disability impairments and can be found here: http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm Info about the waiting period can be found here: http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/151/session/L3RpbWUvMTM4MDI0OTM1Ni9zaWQvUzM1NE1rQmw%3D

    Neither GBS nor CIDP are specifically listed in the blue book meaning, I believe, that you would have to go through a longer evaluation process to determine if your condition warrants coverage. More info about that here: http://www.disabilitysecrets.com/page9-8.html

    Once SSA-mainland determines your ‘conditions’ meet their criteria of “severe”, they will pass the final decision onto their state offices in Hawaii. Hawaii will use medical evidence to evaluate your ‘impairment’ vs. the ‘conditions’ and make a decision that you qualify, or not. The evidence must show that the impairment is severe and has lasted or is expected to last for a continuous period of at least 12 months, or result in death.

    Another approach, if you qualify, is to use the State of Hawaii TDI program and tap into its benefits without affecting your SSA benefits. You must file the form TDI-45 within 90 days of the disability. Learn more about Hawaii’s TDI program here: http://labor.hawaii.gov/dcd/home/about-tdi

    Here is more info about filing for disability in Hawaii:

    You have a tall task in front of you and I hope it all works to your advantage. Keep us informed about what you learn so others here can gain from your experience.