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.

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

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.

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.

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.

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.

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.

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:
http://www.disabilitysecrets.com/disability-resources-hawaii.html

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.