Your Replies

  • September 26, 2013 at 9:01 pm

    Spencer, you did not mention what country or state/providence you are from and these kinds of benefits vary widely between government agencies. In the USA, to my knowledge, Social Security does not pay partial or short-term disability benefits. It is usually the state or private insurance that covers temporary disability.

    For instance, in my State of California I had a freak work related knee injury (while flying to a job site) that required surgery then time off work to heal. My employer and I had been paying for the California Disability Insurance via payroll deductions. This arrangement, and the fact that my injury was work related, allowed me to get all the medical bills covered along with compensation for lost wages.

    I will assume you have some form of GBS-CIDP or you wouldn’t be posting in this forum. I think it might be difficult to link the cause of your disability to work, if that may be needed to process a claim.

    Maybe if you gave us a little more background we might be able to provide more specific ideas, suggestions.

    September 24, 2013 at 8:19 pm

    This is a duplicate of I post I recently made under another topic, but it is more appropriate for this topic –

    Qualifying for disability is not always an easy task for many of us. I was denied when I first applied and again on my first protest. I used paid help from a person who had experience dealing with Social Security disability to help improve my chances of getting approved. Finally on my third (grievance complaint) attempt, that was conducted via a phone interview with an agent from SSA, I was granted disability.

    I tried to make disability coverage retro-active to when I became disabled with GBS/CIDP, but they wouldn’t do that and I lost several months of income. I found out later they no longer grant retro-active disability coverage.

    Start with the on-line application to help speed things up a bit: http://www.ssa.gov/applyfordisability/ There is a lot of red tape involved in filling and you will have to gather documents, and then wait for their large wheels to slowly turn before you receive a response.

    I would advise filing right away for disability and being persistent in the face of rejection.

    September 24, 2013 at 2:37 am

    I was on Prednisone while doing PE, so CIDP didn’t have much of a chance to become active again. Most of my Myelin damage is pretty severe and I cannot walk or stand. I require a Hoyer lift to get me in/out of my wheelchair.

    Maybe another member (GH?) might have had a similar experience to yours.

    I hope its only a temporary setback for you and the treatments continue to work for you so you can stay off the other drugs.

    September 22, 2013 at 3:54 am

    If you live in California you should read this recent LA Times article about the insurance changes going into effect next month: http://www.latimes.com/business/la-fi-insure-doctor-networks-20130915,0,2814725.story I don’t know if NY insurance companies are up to the same tricks, but probably so.

    Medicare Advantage Plans are discussed here in some detail: http://www.medicare.gov/sign-up-change-plans/medicare-health-plans/medicare-advantage-plans/medicare-advantage-plans.html

    I have Medicare as my primary carrier and Anthem Blue Cross PPO (ABC) as my secondary (Medicare Advantage Plan) insurance carrier. ABC will pay my medical bills (parts A & B) and receive reimbursement directly from Medicare for the portion covered by Medicare. All my medical bills go to ABC’s claims department, none go directly to Medicare.

    I had home IVIG while under Medicare (ABC). Medicare/ABC did not cover all the costs and I had to negotiate with the home health agency to reduce and write-off the several thousand dollars they wanted me to pay. Letters went back and forth for many months before they finally wrote-off my balance. If I had to use home IVIG again, I would make sure they were a “contracted provider” and pre-negotiate the costs, then pick a provider I could afford.

    I hope you get the coverage you need.

    September 18, 2013 at 4:10 am

    As you indicate, there may not be many good GBS/CIDP specialists in Orlando. However, there are in the Tampa area and the GBS-CIDP Foundation has an office in Orlando. They may be able to provide doctor references (or maybe this is one of those you spoke to). Contact:
    Ian Harper
    Orlando, FL 32837
    407 850 9402

    If your friend doesn’t mind driving ~105 miles to Clearwater, this doctor specializes in GBS/CIDP: http://www.tampabayneurology.com/schneider.shtml

    Or this CIDP specialist (considered a CIDP Guru by some) 30 miles closer in Tampa: http://health.usf.edu/medicine/neurology/faculty/gooch.htm

    There does seem to be more specialists in the Tampa area. Maybe you should contact the GBS-CIDP Foundation office there too:
    Nancy Roberts
    Belleair, FL 33756
    813 300 3800

    September 18, 2013 at 2:24 am

    I think it would be nearly impossible for anyone in this forum to differentiate between a ‘money making racket’ or good physician practices. Nor do we know how old her tests really are or how reputable the testing organization was.

    I would not think that doctors in Orlando, who spent many years in med school at no insignificant cost, would be out to scam her. If they were, they wouldn’t be doctors for very long and the various websites that track doctor performance for the public would be all over it.

    If she has a financial hardship due to lack of income, funds, insurance, etc. most doctors will work with patients and she should try negotiation to reduce fees and establish a payment plan. Maybe this would be a way of convincing the doctor to skip tests that are not that important to HIS diagnosis.

    CIDP, if that is what she has, can be a changing disease that warrants retesting every so often … if for no other reason than trying to establish if she is better, worse, or the same. Nerve conduction studies may need to be made regularly to help determine the extent of myelin damage and help the doctor choose the best treatment plan for her.

    CIDP comes in many different flavors and has several variants. Knowing exactly what she has is important to pick the best possible treatment plan. Perhaps her previous doctor was less experienced with the disease; and his diagnosis, based on incorrectly configured tests and/or incomplete interpretation of test results, has left her new doctors a bit in the dark about the accuracy of the diagnosis.

    September 13, 2013 at 3:09 am

    I’m relatively new to these forums and don’t know when the search function was restored, but I can tell everyone that it’s working now.

    It is only accessible from the main forum page: http://www.gbs-cidp.org/forums . The forums search box is located just above the column header title “Freshness”. Enter your keywords there and click the Search button.

    The other search box “Search Site” in the upper right of your screen is for finding content in other areas of the site and is not intended for Forum searches.

    September 12, 2013 at 3:41 am

    You might find some ideas here: http://www.gbs-cidp.org/topic/muscle-cramping

    September 12, 2013 at 3:13 am

    There should be no problem switching back and forth between PE and IVIG. I did this myself more than once. The only downside is that the effects of IVIG to supress the auto-immune responses will be negated with PE. But it may be more important to remove most of the bad anti-bodies BEFORE going back on IVIG. Please run all this by your doctors, but I think it could give your husband’s disease the ‘kick in the pants’ you mention.

    September 11, 2013 at 10:34 pm

    There isn’t as much writtern about Anti-myelin-associated glycoproteinas (Anti-MAG) as there is about other peripheral neuropathies due to it being so rare. However, the results of a very recent clinical trial can be viewed here: http://www.neurology.org/content/80/24/2217.abstract

    Another article discussing Anti-MAG treatment experiences can be viewed here: http://gbs-cidp.org/newsletters/printer%20versions/treatment%20experience%20in%20patients%20with%20anti-mag%20neuropathy.htm

    September 11, 2013 at 10:06 pm


    MGUS was previously discussed here: http://www.gbs-cidp.org/topic/relationship-between-iga-pdn-and-anti-mag-pdn-mgus-associated-demyelinating-neuropath

    A more comprehensive technical review of MGUS vs. other peripheral neuropathies is available here: http://www.guideline.gov/content.aspx?id=34913

    If you can handle a 6-7 hour drive to Phoenix, there is a ‘Center of Excellence’ that can probably help you:
    Banner Good Samaritan Medical Center
    5090 North 40th St.
    Suite 250
    Phoenix, AZ 85018
    Phone: 623-688-3013
    Fax: 602-258-3368
    Adult Care: Todd D. Levine, MD
    David S. Saperstein, MD

    The GBS-CIDP Foundation has a chapter in New Mexico that may be able to provide a referral to a nearby Neurologist, contact:
    Rose Gallegos
    Fairview NM 87533
    505 929 2815

    You should get treatment right away to reduce the risk of damage to the myelin.

    Hope you find treatment quickly and are feeling better soon.

    September 10, 2013 at 8:13 pm

    If you are in Mumbai side of india, try Dr A.B.Shah at SIR Hurkison Nurrotumdas Hospital and Research Centre. He was reported as a knowledeable GBS/CIDP doctor on another website. You should check to see if the hospital has a special program that provides financial assistance to those in need.

    September 9, 2013 at 7:18 pm


    I wish CIDP and its variants had black and white symptoms and predictable expectations from certain treatments. Some respond well to one treatment, but not to another, and it is not uncommon for some to feel worse before they feel better. There is no standard for recovery and results vary by individual. The good news is that your husband is getting IVIG, one of the most proven helpful treatments for CIDP!

    Myelin can grow back to some extent at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is agonizingly 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 (not covered by Medicare for CIDP). Myelin regrowth can be even slower if your husband’s blood still has the anti-bodies present that caused the attack on the myelin in the first place. Plasmapheresis filters these from the blood, IVIG and Prednisone keeps the auto-immune system from producing more.

    One of the newer medicines that have the potential to help treat CIDP is Dalfampridine (Ampyra). Loss of potassium can disrupt the nerve’s ability to conduct messages. Dalfampridine has been shown to help stop potassium leakage from the nerve fibers. This strengthens the signals that the brain sends through nerves whose myelin has been lost or damaged. Unfortunately it is very expensive and not yet covered by Medicare for use on CIDP patients (only for MS). What is needed is a clinical trial using Dalfampridine to treat CIDP. Without such, Dalfampridine is considered experimental for CIDP.

    Another treatment option is Alpha Lipoic Acid which is available over the counter. There was a recent clinical trial using this treatment and we are waiting for the results to be posted. The clinical trial is listed here: http://clinicaltrials.gov/ct2/show/NCT00962429?term=CIDP&state1=NA%3AUS%3AOR&rank=1 you can also perform a search in the GBS-CIDP forums to see what others are saying about Alpha Lipoic Acid.

    I hope your husband responds favorably to IVIG and begins to regain some of his lost abilities quickly.

    September 6, 2013 at 10:20 pm


    It almost sounds like you have some Fibromyalgia symptoms in addition to a mild GBS. This combination is not unheard of and diagnosis can be more difficult when both are present.

    Have you had any testing (nerve conduction study, elevated CSF protein test, etc) for GBS to help confirm it? How are your reflexes? According to recent research, less than 5% of GBS patients retained all reflexes during the illness. The presence of intact reflexes should suggest an alternative diagnosis other than GBS.

    I had Miller-Fisher that seems to affect the face and surrounding areas. I had blurred vision, difficulty speaking, swallowing problems, neck weakness, tingling and numbness on my face. I also had some lightheadedness, but that may have had to do with other aspects of my particular GBS/CIDP. Treatment of MFS is similar to treatment of GBS/CIDP: Plasmapheresis, IVIG, and Prednisone seem to be most prescribed.

    My wife has had a severe case of Fibromyalgia for many years and she has gone from specialist to specialist. Fibromyalgia symptoms usually include fatigue and a burning sensation in the muscles, often in the neck and shoulders. Sometimes shooting or throbbing pain is present. Physical therapy is more likely to provide benefit for Fibromyalgia, fairly quickly when compared to GBS. Prescriptions of Gabapentin and Savella are often prescribed to treat Fibromyalgia.

    Whether you have anything other than a mild case of GBS is up to your doctor’s to determine. If it is a mild GBS, you might find Alpha Lipoic Acid helpful. Although there is no definitive medical research on its usefulness yet, some have reported beneficial results from taking it. Search the forums here for more info about it.

    Hope you get better quickly.

    September 4, 2013 at 11:30 pm

    Hi Harry,

    There are several different types of catheters that can be used for PE treatments.
    1. Standard IV line – this is installed for every treatment and removed when done. It has the slowest infusion rate.
    2. PICC Line – this can stay in for a few months, depending on how many PE treatments are needed. It has a medium fast infusion rate. You must keep the insertion area clean in-between PE treatments. You can usually enclose it in a plastic bag so you can take a shower.
    3. Central Venous Catheter – most of these can stay in for over a year and provide the highest infusion rates. They advise against showering with this installed to reduce the risk of infection. Check this link for additional info: http://en.wikipedia.org/wiki/Central_venous_catheter

    I had the 2-line tunneled catheter installed in my neck and the connection tubes went under my skin and came out (~2”) in my upper chest. Both lines were capped and taped to the outside of my chest in-between PE’s. If you sleep on your stomach, that could be a problem. It would itch from time to time, but I never had any pain while wearing it. I flushed it and changed the bandage every week. They tell you to flush the lines and change bandages daily, but for me, that would have created more risk of infection.

    I did try the PICC line once, but it almost doubled my PE infusion time. It was fine for IVIG though. I opted for fastest infusion rates while I was doing PE.

    I wish you the best of luck with your PE treatments!