Neuropathy Hope - Western Neuropathy Association
Transcription
Neuropathy Hope - Western Neuropathy Association
Neuropathy Hope Hope through caring, support, research, education, and empowerment A newsletter for members of the Pacific Chapter of The Neuropathy Association (PCNA) January 2013 Issue 1 Volume 11 The Link Between Neuropathy and Shingles Vitamin B12 PCNA Support Groups President’s Message Drug Offers New Pain Management Therapy For Diabetes PN Literature Review Alpha Lipoic Acid Good For Neuropathy A Surprising Cause Of Neuropathy PCNA Board of Directors Dec. 10, 2012 Meeting Update Save These Dates Pacific Chapter of The Neuropathy Association P.O. Box 276567 Sacramento, CA 95827-6567 877-622-6298 888-556-3356 info@pnhelp.org www.pnhelp.org THE LINK BETWEEN NEUROPATHY AND SHINGLES By Russell Chin, M.D. Postherpetic neuralgia (PHN) is a painful condition that often occurs as a result of shingles (also known as herpes zoster). It is estimated that about 10-15% of people with shingles will develop PHN. The risk for developing PHN also increases with age—especially in people over 60—and those who are immunocompromised. Anyone who once had chickenpox is at risk of shingles since the virus may become reactivated years after the initial infection. The varicella zoster virus—which causes chicken pox during childhood and sometimes adulthood— enters the nervous system where it remains dormant for many years. Normally, the body’s immune system stops the virus from becoming active; however, with advancing age or an immunocompromised state, the virus reactivates causing shingles. Shingles is an infection of a nerve and the area of skin around it. Typically, the nerves of the chest and abdomen on one side of the body are affected. Even after the shingles rash subsides the pain can persist or recur in the shingles-affected area and is called PHN. PHN symptoms are usually restricted to the area of skin where the shingles outbreak first occurred. Symptoms include: occasional sharp burning, shooting pains; increased sensitivity to touch and temperature changes; itchiness; and, rarely muscle weakness or paralysis. People suffering from PHN may also develop anxiety, depression, and sleeping difficulties resulting from chronic pain. There are a variety of therapies available to manage the pain associated with PHN. A 2004 practice parameter of the American Academy of Neurology recommends tricyclic antidepressants (amitriptyline, nortriptyline, desipramine, and maprotiline), antiseizure drugs (gabapentin, pregabalin), opioids, topical lidocaine, and capsaicin to treat PHN. (Amitriptyline is noted to have significant cardiac effects in the elderly compared with nortriptyline and desipramine.¹) A high-dose capsaicin patch (Qutenza®) and a once-a-day prescription of gabapentin (Gralise™) offering 24-hour pain control for people with aftershingles pain has recently become available in the U.S. for PHN. Therapy should be individualized and patients should work closely with their doctors to determine which medication or combination of medications can provide maximum pain relief with no or minimal side effects. Russell L. Chin, M.D. is assistant professor of Neurology at Weill Cornel Medical College. He is an assistant attending neurologist at New York Presbyterian Hospital and at the Peripheral Neuropathy Center at Weill Cornel Medical College, which is a Neuropathy Association-Designated Center of Excellence. Used by permission of The Neuropathy Association. VITAMIN B12 One of the known causes of peripheral neuropathy is low B12. This information is a service to you to more fully understand what it is and what foods contain it so you can plan your diet to include some of these. B12 level is something your doctor should include in blood work periodically. Your doctor may encourage supplements as well. However, don’t start taking B12 without consulting your doctor. Some people have a high level of B12 and don’t need supplementation. Check with your doctor on any supplement you think you might like to try. It may conflict with other medications you take or not be recommended because of other physical conditions you may have, Be sure to include all supplements on your medication list you carry with you. Dietary Supplement Fact Sheet: Vitamin B12 Introduction Vitamin B12 is a water-soluble vitamin that is naturally present in some foods, added to others, and available as a dietary supplement and a prescription medication. Vitamin B12 exists in several forms and contains the mineral cobalt, so compounds with vitamin B12 activity are collectively called “cobalamins”. Methylcobalamin and 5-deoxyadenosylcobalamin are the forms of vitamin B12 that are active in human metabolism]. Vitamin B12 is required for proper red blood cell formation, neurological function, and DNA – Continued on page 5 Roster of Our PCNA Information and Support Groups 2012 PCNA Board of Directors CALIFORNIA Alturas Bev Anderson Antioch-Brentwood President Karen Polastri Vice President Pam Hart Secretary Wayne Hewlett Treasurer Sandra Grafrath Director Michael Green Director Emeritus Arvin Magusara Director Emeritus Casimir Sammanasu Director Emeritus Sandra Vinson Director Emeritus Dick Ward Director Emeritus For information call: Bev Anderson (877) 622-6298 3rd Wednesday, 2PM Sand Creek,1D Kaiser-Permanente 4501 Sand Creek Rd. Antioch L.D. Wright (925) 684-7548 Auburn 1st Monday, 1:30 PM Woodside Village MH Park 12155 Luther Road Sharlene McCord (530) 878-8392 Bakersfield 3rd Wednesday, 1:30 PM Stockdale Moose Lodge 905 S. Stine Rd. David Wollard (661) 663-9406 Editor Newsletter Design by Diane Blakley Designs Page 2 Fresno Placerville 3 Tuesday, 11:00 AM Carrows 4280 N. Blackstone Marvin Arnold (559) 226-9466 rd Redwood City 2nd Monday, 1:30 PM GV United Methodist Church 236 S. Church Street Salli Hearn (530) 268-1017 Jackson Carmichael 2nd Monday, 10:30AM Lakeport Senior Center 507 Konocti Avenue Grace Gault (707) 274-9999 2nd Tuesday, 1:30 PM Eskaton 3939 Walnut Ave. Karen Robison (916) 972-1632 Call Karen before coming as it is a gated community and sometimes the day/time changes. Lincoln 2 Wednesday, 1:30 PM First Presbyterian Church 2490 Grove Way (next to Trader Joe) Judson Leong (510) 581-6697 Madera For information, call Barbara Dryden at (707) 994-0734 Concord 3rd Thursday, 1:30 PM First Christian Church 3039 Willow Pass Road Bev Anderson (877) 622-6298 Call Bev Anderson for information (877) 622-6298 Livermore 4th Tuesday, 10 AM Heritage Estates 900 E. Stanley Blvd. Sandra Grafrath (925) 443-6655 For information call Leo Trzepowski (559) 673-4388 Merced 2nd Thursday, 1 PM Central Presbyterian Church 1920 Canal Street (The Hoffmeiser Center across the street from the church) Larry Frice (209) 358-2045 Modesto Crescent City 3rd Monday, 10:30 AM Trinity United Presbyterian Church 1600 Carver Rd., Rm. 503 Monte Schrader (209) 531-3838 Davis Monterey Call Bev Anderson for information (877) 622-6298 Elk Grove 2nd Tuesday, 2 PM Elk Grove Senior Center 8830 Sharkey Avenue Michael Colozzi (916) 421-8103 Eureka For information call: Earlene (707) 496-3625 Folsom Call Bev Anderson for information (877) 622-6298 Redding Grass Valley For information call: Bev Anderson (877) 622-6298 Lakeport Clearlake Call Bev Anderson for info (877) 622-6298 2nd Wednesday, 1:30 PM Neighborhood Church of Redding 777 Loma Vista John Wright (530) 222-6570` 3rd Wednesday, 3 PM N Berkeley Senior Ctr 1901 Hearst Ave. (corner of MLK) Johnetta Smallwood (510) 841-0239 Castro Valley For information call: Kathleen Denson (805) 746-8090 Garberville Berkeley 2nd Tuesday 3:30-5:00 PM Davis Senior Center 646 A Street Mary Sprifke (530) 756-5102 Bev Anderson Oxnard For information call: Betty Adams (707) 964-3327 For information call: Bev Anderson (877) 622-6298 nd Please contact your group leader or check your local paper to find out about the topic/speaker for the upcoming meeting. Fort Bragg 3rd Wed.,10:30 AM–odd numbered months First Presbyterian Church 501 El Dorado Street Don & Ann Trout (831) 372-6959 Napa 1st Thursday, 2 PM Napa Senior Center 1500 Jefferson Street Ron Patrick (707) 257-2343 bonjournapa@hotmail.com Oakland 1st Thursday, 1 PM Grand Ave. 7th Adventist Church 278 Grand Ave. Kathleen Nagel (510) 653-8625 4th Tuesday, 1 PM Sequoia Hospital Health and Wellness Center 749 Brewster Avenue Stan Paschote (510) 490-4456 Roseville 2nd Tuesday, 1 PM Sierra Point Sr. Res. 5161 Foothills Blvd. Bev Anderson (877) 622-6298 Sacramento 3rd Tuesday, 1:30 PM Northminster Presby. Church 3235 Pope Street Charles Moore (916) 485-7723 Salinas For information call Bill Donovan, M.D. (831) 625-3407 San Francisco 4th Thursday, 10 AM UC-San Francisco Med Ctr. 400 Parnassus Avenue Amb. Care Ctr. 8th Flr., Rm A888 Y-Nhy (e nee) Duong (415) 353-3667 San Jose 3rd Saturday, 10:30 AM O’Conner Hospital 2105 Forest Avenue SJ DePaul Conf. Rm. Stan Pashote (510) 490-4456 San Rafael 3rd Wednesday, 1 PM Lutheran Church of the Resurrection 1100 Las Galinas Avenue Scott Stokes (415) 246-9156 Santa Barbara 4th Saturday, 10 AM First Presbyterian Church 21 E. Constance St. Shirley Hopper (805) 689-5939 Santa Cruz 3rd Wednesday, 1PM Odd numbered months Trinity Presbyterian Church 420 Melrose Avenue Mary Ann Leer (831) 477-1239 maleer@comcast.net Santa Maria 2nd Tuesday, 12:00 Noon Elwin Mussel Senior Center 510 Park Street Wanda (805) 938-1086 Mary (805) 344-6845 – Continued on page 3 President’s Message By Bev Anderson 2013 is here already. It is full of promise and probable problems, but it also is a clean slate to write a new chapter of our lives on. Thirteen has been a special number for me so I have great hope that this will be a banner year for me and for you. If you are like me, one of the first things you think about is that it is time to prepare income taxes again. A member called me recently as she was getting her documents ready for her taxes. She will likely be ready to file in very early January. She wanted to know if dues and contributions were tax deductible. I assured her that they were. PCNA is a 501 (c) (3) charitable organization. I didn’t tell her, but I was in total awe of someone that was working on their 2013 taxes before the 15th of December. Maybe some of you are already preparing too. At the beginning of a new year, there are lots of things that could be said. I’d like to give you several pieces of information that could help you and/or your neuropathy this year. Some people seem to think that only those with diabetes have to be careful about their feet and check them daily. I don’t have diabetes. I’ve told my story a number of times in support group meetings, but you may not have heard. I woke up in the night and made the required trip. I stepped on one of those long straight pins that used to come in clothes sent via mail order. It went into my foot – to the bone I later found out. It hurt a little but not hugely. I pulled it out, put some peroxide on it, and went back to bed. It twinged in the morning somewhat but I ignored it. Numb feet can sometimes be an advantage. Some weeks later, I noticed a black spot on the bottom of my foot. It got larger and darker. I showed it to my doctor. He sent me to my podiatrist. It was an abscess. He drained it down to the bone with my barely feeling anything thanks to neuropathy and had it x-rayed. It proved to have osteomyelitis which could soon have taken my foot or my life. They put me in the hospital for a week with several bags of antibiotics hung and dripped the medicine through my IV constantly. I was sent home with a pic line (home operated IV) that failed so I was put on major amounts of one antibiotic for 7-1/2 weeks. Rather soon, the metatarsal bone had to be removed as that was what the pin hit. I’ve had no further problem with it for which I am glad. Please don’t go barefoot or even stocking footed. It is too risky for people with neuropathy. – Continued on page 7 PCNA Information and Support Groups – continued from page 2 Santa Rosa 1st Thursday, 10:30 AM Santa Rosa Senior Center 704 Bennett Valley Road Willie Quarante (707) 544-3236 Sonoma 1st Friday, 10:30 AM Vintage House 264 1st Street Joann Bertolucci (707) 996-8336 Sonora For information call Bev Anderson (877) 622-6298 Stockton 3rd Tuesday, 1 PM St. Andrew Lutheran Church 4210 Claremont Avenue (at March Lane) Jerry Elliot (209) 447-1242 Susanville For information call: Bev Anderson (877) 622-6298 Truckee For information call: Bev Anderson (877) 622-6298 Tulare-Visalia 3rd Tuesday, 2 PM Alternates between Tulare & Visalia Call for location: Cathy Moriarity (559) 686-2351 Esther Hoover (559) 799-2143 Turlock 3rd Monday, 1 PM Covenant Village Adm. Bldg. Classroom 2125 N. Olive Street Dee Muhlenbruch (209) 667-0042 Ukiah Last Thursday, 5:30 PM Selzer Realty Conf. Room 551 S. Orchard, Ukiah Shirley Blattner (707) 621-0208 Carole Hester (707) 972-2795 Walnut Creek 4th Friday, 10 AM Rossmoor, Hillside Clubhouse Las Trampas Room Carolyn Cash (925) 254-8195 West Sacramento No meeting until new leader is found Sandra Vinson (916) 372-6093 slvins11@gmail.com Woodland 3rd Monday, 1:30 PM Woodland Comm. & Senior Center 2001 East Street Beverley Matteoli (530) 662-7631 Yreka For information call Bev Anderson (877) 622-6298 Yuba City-Marysville 2nd Tuesday, 10:30AM St. Andrew Presbyterian Church 1390 Franklin Rd. (next to Winco Shopping Center) Ken Lux (530) 673-3479 NEVADA Reno-Sparks For information call Bev Anderson (877) 622-6298 OREGON Salem 4th Monday, 6:30 PM Community Health Education Center Salem Hospital Campus, Bldg. D 890 Oak Street SE Michael Siebler (503) 857-3508 newsofsalem@gmail.com Brookings For information, call Robert Levine (541) 469-4075 Start a support group in your area: Contact Bev Anderson at (877) 622-6298 or info@pnhelp.org INDEX TOP Help With Health Care Challenges If the number is not in your area, call the one listed and ask for the right number. Medicare www.Medicare.gov ••• The Affordable Health Care Act For current information go to www.HealthCare.gov ••• HICAP Health Insurance Counseling for seniors and people with disabilities. www.cahealthadvocates.org /HICAP/ Call (800) 434-0222 to ask a question or to make an appointment. ••• Health Rights Hotline Serving Placer, El Dorado, Yolo, & Sacramento Counties, regardless where you receive your health coverage. Tollfree (888) 354-4474 or TDD (916) 551-2180. In Sacramento, (916) 551-2100. www.hrh.org. ••• HMO Help Center Assistance 24 hours a day, seven days a week. (888) HMO-2219 or (877) 688-9891 TDD ••• DRA’s Health Access Project Free publications about the health care, insurance rights and concerns of people with disabilities and serious health conditions. For more information, go to http://dralegal.org/ and click on “Projects”. Page 3 DISCOUNTS FOR PCNA MEMBERS The following companies or individuals have agreed to give PCNA a discount to PCNA members. Give them a call or visit. If you choose to purchase the service or wares of any on this list, pull out your PCNA Membership Card and claim the discount. Anodyne Therapy Infrared Light Therapy equipment - $50 off Model Freedom 300 (single leg at a time) and $50 discount on Model 120 that does both legs at the same time. Contact: 800-521-6664 or www.anodynetherapy.com HealthLight Infrared Light Therapy equipment - 10% off Single Boot System $999 and Dual boot system $1759 Contact: 888-395-3040 or www.healthlight.us Auburn The Footpath 825 Lincoln Way Auburn, CA 95603 (530) 885-2091 www.footpathshoes.com PCNA Discount: 10% off the regular price shoes. Elk Grove Shoes That Fit 8649 Elk Grove Blvd. Elk Grove, CA (916) 686-1050 PCNA Discount: 20% off the regular price shoes. Fortuna Strehl’s Family Shoes & Repair Corner of 12th & Main 1155 Main Street Fortuna, CA 95540 (707) 725-2610 Marilyn Strehl, C.PED is a Certified Pedorthic PCNA Discount: 10% off the regular price shoes. – Continued on page 5 Page 4 DRUG OFFERS NEW PAIN MANAGEMENT THERAPY FOR DIABETES A study from the University of Calgary’s Hotchkiss Brain Institute shows there is evidence to support a new drug therapy called nabilone to treat diabetic neuropathy, or nerve pain. Researchers enrolled 60 patients with diabetic neuropathy in a 12-week placebo controlled clinical study. At the end of the study, patients reported less pain and an improvement in sleep and anxiety when taking nabilone as compared to the placebo. “This is a good option to help treat nerve pain due to diabetes, with very few side effects,” says Dr. Cory Toth, a neurologist and the study’s lead researcher. Toth is a member of the University of Calgary’s Hotchkiss Brain Institute, Department of Clinical Neurosciences and is the research director of the Calgary Chronic Pain Centre Clinic. The medication used in the study has the generic name nabilone, and is currently used in Canada to treat nausea in chemotherapy patients. This study gives doctors more evidence to support its prescription for treating neuropathy pain in diabetics. Nabilone is a synthetic cannabinoid, which mimics some of the chemical compounds of cannabis, or marijuana. It is approved for use by Health Canada and the FDA. “This study is further demonstration of the potential medical benefits of cannabinoids in a difficult pain condition. Dr. Toth and his team have conducted a solid trial which, although small, validates our clinical experience. This study gives physicians support to consider further options in treating this devastating chronic pain disorder,” says Dr. Mark Ware, Association Professor at the McGill University Health Centre. Type 2 diabetes is exploding at epidemic rates all over the world, and Canada is no exception. Recent studies show that type 2 diabetes is present in close to 10 percent of Canadian adults and growing at faster than predicted rates. Diabetic neuropathy is damage caused to the nerves, which results in numbness, tingling, burning and pain. About half of all diabetics suffer from diabetic neuropathy, and about half of the group experiences extreme pain, sleep disturbances, and difficulties walking. Leslie knows firsthand the pain associated with diabetic neuropathy. She was diagnosed with type 2 diabetes five years ago. Having participated in the study, she experienced positive results. “My pain was so severe that I could barely walk a block. After taking nabilone, I can manage my pain and I can function day to day,” she says. (Used from a public domain news release) PERIPHERAL NEUROPATHY LITERATURE REVIEW By William B. Donovan, M.D. We can access the National Library of Medicine (NLM) to obtain information on peripheral neuropathy (PN). There are over 100 medical articles a month written on PN. I review these references and select articles that would appear to be most interesting to us neuropathy sufferers. This is the link to PubMed that will take us to the NLM: www.ncbi.nlm.nih.gov/sites/entrez If you are reading this article on the computer, just click on the above link to go there. If you are reading the print edition of the newsletter, type this link into the address bar of the browser on a computer. If you don’t know how, get a librarian or friend to help you. After you get to PubMed, you will see a line that says “Search _PubMed” followed by “for” and a space. Every article in the NLM is given a PMID, an eight digit identification number. I will give you PMID numbers of the selected articles. Type the PMID into the space after the “for” and click on “Go” at the end of the space, or press the ENTER key on your keyboard. You will then see a one paragraph abstract of the article appear, as well as links to related articles. INDEX This month’s PMIDs: •21775755 This is the four- year, multicenter, randomized, controlled, Nathan I study of alpha lipoic acid in chronic, mild to moderate, diabetic, distal, symmetric, sensorimotor polyneuropathy. Nathan I demonstrated clinically meaningful decrease in the progression of neuropathic symptoms. •21807565 A French study demonstrating that rTMS (repetitive transcranial magnetic stimulation) significantly reduces neuropathic pain in 79% of peripheral neuropathy patients. •21998121 This is a randomized, controlled study of patients with acute sciatica. In the group treated with two subcutaneous injections of adalimubab (a tumor necrosis factor, alpha), 28% required surgery within three years, whereas 56% of the control group required surgery. •22050401 This Kuwaiti study found that those Type 2 diabetics with peripheral neuropathy had significantly lower vitamin D levels than those without. Further study assessing TOP vitamin D as a preventive is suggested. ALPHA LIPOIC ACID GOOD FOR NEUROPATHY I have been reminded recently that I’ve not mentioned Alpha Lipoic Acid in the newsletter recently. I have taken it for several years and can testify that for me it has been a wonderful help. If you are diagnosed in Europe, especially Germany, Alpha Lipoic Acid is the first thing that you are requested to take. Alpha Lipoic Acid is a universal anti-oxidant. It works in all types of cells to put down free radicals. It also helps to refresh other antioxidants like Vitamin E and C, CoQ10, and glutathione. It has been found effective with a variety of types of neuropathy especially diabetic neuropathy as it helps to stabilize blood sugars. The recommended dosage is 600 mg a day - 300 in the morning and 300 at night. It is taken with food. You want to find a 300 mg capsule or pill rather than taking multiples of other sizes. In Europe and in some places in the United States, it is given by injection or by infusion rather than taking it as a daily medication. It is reported be very effective in reducing the pain and disability of neuropathy. Here is what it says about obtaining it in our listing of Complementary and Alternative Treatments for Neuropathy publication. Alpha Lipoic Acid can be obtained in pharmacies and health food stores but possibly at a lower cost via mail order. Here are two examples, but there are other mail order sites that carry it as well. At Vitacost: 1-800-793-2601 or www.Vitacost. com. Two bottles of 120 (240 total) $12.69 each plus $4.95 for shipping no matter the size of your order is $30.33. The recommended choice when asked is NSI Alpha Lipoic Acid, 300 mg. - 120 caps. Swanson: 1-800-437-4148 Item #D4SWU136. This is for bottles of 60 of the 300 mg. capsules. Each bottle is $9.89. You save on shipping and handling by ordering more. So it is $9.89 x 3 - $29.67 - $4.95 (S/H) - #$34.64 is the total. The Vitacost product is reported to be a smaller, easier to swallow capsule. It is important to take the capsules with food and best to not lie down immediately after taking it. Like other vitamins or supplements, you want to let it begin digesting before changing its environment. COSTCO is always a good place to check on the price of medicine and over the counter items due to their patient oriented drug pricing policies. Vitamin B12 - Continued from page 1 synthesis. Vitamin B12 functions as a cofactor for methionine synthase and L-methylmalonylCoA mutase. Methionine synthase catalyzes the conversion of homocysteine to methionine. Methionine is required for the formation of S-adenosylmethionine, a universal methyl donor for almost 100 different substrates, including DNA, RNA, hormones, proteins, and lipids. L-methylmalonyl-CoA mutase converts L-methylmalonyl-CoA to succinylCoA in the degradation of propionate, an essential biochemical reaction in fat and protein metabolism. Succinyl-CoA is also required for hemoglobin synthesis. Vitamin B12, bound to protein in food, is released by the activity of hydrochloric acid and gastric protease in the stomach. When synthetic vitamin B12 is added to fortified foods and dietary supplements, it is already in free form and, thus, does not require this separation step. Free vitamin B12 then combines with intrinsic factor, a glycoprotein secreted by the stomach’s parietal cells, and the resulting complex undergoes absorption within the distal ileum by receptormediated endocytosis. Approximately 56% of a 1 mcg oral dose of vitamin B12 is absorbed, but absorption decreases drastically when the capacity of intrinsic factor is exceeded (at 1–2 mcg of vitamin B12). Pernicious anemia is an autoimmune disease that affects the gastric mucosa and results in gastric atrophy. This leads to the destruction of parietal cells, achlorhydria, and failure to produce intrinsic factor, resulting in vitamin B12 malabsorption. If pernicious anemia is left untreated, it causes vitamin B12 deficiency, leading to megaloblastic anemia and neurological disorders, even in the presence of adequate dietary intake of vitamin B12. Vitamin B12 status is typically assessed via serum or plasma vitamin B12 levels. Values below approximately 170–250 pg/mL (120–180 picomol/L) for adults indicate a vitamin B12 deficiency. However, evidence suggests that serum vitamin B12 concentrations might not accurately reflect intracellular concentrations. An elevated serum homocysteine level (values >13 micromol/L) might also suggest a vitamin B12 deficiency. However, this indicator has poor – Continued on page 6 DISCOUNTS FOR PCNA MEMBERS Continued from page 4 Sacramento Midtown Comfort Shoes 3400 Folsom Blvd. Sacramento, CA 95835 (916) 731-4400 PCNA discount: 15% on the regular price. West Sacramento Beverly’s Never Just Haircuts and Lilly’ Nails 2007 W. Capitol Ave, West Sacramento, CA Hair–(916) 372-5606 Nails–(916) 346-8342 PCNA discount: 10% off the regular price Additional Discounts Do you know a business that might offer our members a discount? Tell them that they will be listed each month in our newsletter and on our website so our members will know of their generosity and patronize their business. Call (877) 622-6298 or e-mail info@pnhelp.org. We ’ l l m a i l a n agreement form to the business, and once we have it, we’ll add them to this list. Page 5 Vitamin B12 - Continued from page 5 specificity because it is influenced by other factors, such as low vitamin B6 or folate levels. Elevated methylmalonic acid levels (values >0.4 micromol/L) might be a more reliable indicator of vitamin B12 status because they indicate a metabolic change that is highly specific to vitamin B12 deficiency. Intake recommendations for vitamin B12 and other nutrients are provided in the Dietary Reference Intakes (DRIs) developed by the Food and Nutrition Board (FNB) at the Institute of Medicine (IOM) of the National Academies (formerly National Academy of Sciences). DRI is the general term for a set of reference values used for planning and assessing nutrient intakes of healthy people. These values, which vary by age and gender, include: Recommended Dietary Intake Recommended Dietary Allowance (RDA): average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals. • Adequate Intake (AI): established when evidence is insufficient to develop an RDA and is set at a level assumed to ensure nutritional adequacy. • Tolerable Upper Intake Level (UL): maximum daily intake unlikely to cause adverse health effects. Sources of Vitamin B12 Food Vitamin B12 is naturally found in animal products, including fish, meat, poultry, eggs, milk, and milk products. Vitamin B12 is generally not present in plant foods, but fortified breakfast cereals are a readily available source of vitamin B12 with high bioavailability for vegetarians. Some nutritional yeast products also contain vitamin B12. Fortified foods vary in formulation, so it is important to read product labels to determine which added nutrients they contain. Several food sources of vitamin B12 are listed in Table 2. Dietary supplements In dietary supplements, vitamin B12 is usually present as cyanocobalamin, a form that the body readily converts to the active forms methylcobalamin and 5-deoxyadenosylcobalamin. Dietary supplements can also contain methylcobalamin and other forms of vitamin B12. Existing evidence does not suggest any differences among forms with respect to absorption or bioavailability. However the body’s ability to absorb vitamin B12 from dietary supplements is largely limited by the capacity of intrinsic factor. For example, only about 10 mcg of a 500 mcg oral supplement is actually absorbed in healthy people. In addition to oral dietary supplements, vitamin B12 is available in sublingual preparations as tablets or lozenges. These preparations are frequently marketed as having superior bioavailability, although evidence suggests no difference in efficacy between oral and sublingual forms. Prescription Medications Vitamin B12, in the form of cyanocobalamin and occasionally hydroxocobalamin, can be administered parenterally as Page 6 TABLE 2: Selected Food Sources of Vitamin B12 Food Micrograms Percent (mcg) DV.* per serving Clams, cooked, 3 ounces 84.1 Liver, beef, cooked, 3 ounces 70.7 Breakfast cereals, fortified with 100% of the DV for vitamin B12, 1 serving 6.0 Trout, rainbow, wild, cooked, 3 ounces 5.4 Salmon, sockeye, cooked, 3 ounces 4.8 Trout, rainbow, farmed, cooked, 3 ounces 3.5 Tuna fish, light, canned in water, 3 ounces 2.5 Cheeseburger, double patty and bun, 1 sandwich 2.1 Haddock, cooked, 3 ounces 1.8 Breakfast cereals, fortified with 25% of the DV for vitamin B12, 1 serving 1.5 Beef, top sirloin, broiled, 3 ounces 1.4 Milk, low-fat, 1 cup 1.2 Yogurt, fruit, low-fat, 8 ounces 1.1 Cheese, Swiss, 1 ounce 0.9 Beef taco, 1 soft taco 0.9 Ham, cured, roasted, 3 ounces 0.6 Egg, whole, hard boiled, 1 large 0.6 Chicken, breast meat, roasted, 3 ounces 0.3 1,402 1,178 100 90 80 58 42 35 30 25 23 18 18 15 15 10 10 5 *DV = Daily Value. DVs were developed by the U.S. Food and Drug Administration (FDA) to help consumers determine the level of various nutrients in a standard serving of food in relation to their approximate requirement for it. The DV for vitamin B12 is 6.0 mcg. However, the FDA does not require food labels to list vitamin B12 content unless a food has been fortified with this nutrient. Foods providing 20% or more of the DV are considered to be high sources of a nutrient, but foods providing lower percentages of the DV also contribute to a healthful diet. The U.S. Department of Agriculture’s Nutrient Database Web site [13]) lists the nutrient content of many foods and provides a comprehensive list of foods containing vitamin B12. a prescription medication, usually by intramuscular injection. Parenteral administration is typically used to treat vitamin B12 deficiency caused by pernicious anemia and other conditions that result in vitamin B12 malabsorption and severe vitamin B12 deficiency. Vitamin B12 is also available as a prescription medication in a gel formulation applied intranasally, a product marketed as an alternative to vitamin B12 injections that some patients might prefer. This formulation appears to be effective in raising vitamin B12 blood levels, although it has not been thoroughly studied in clinical settings. Disclaimer: This fact sheet by the Office of Dietary Supplements (National Institutes of Health) provides information that should not take the place of medical advice. We encourage you to talk to your health care providers (doctor, registered dietitian, pharmacist, etc.) about your interest in, questions about, or use of dietary supplements and what may be best for your overall health. Any mention in this publication of a specific brand name is not an endorsement of the product. (Information from material in the public domain.) INDEX TOP PCNA BOARD OF DIRECTORS DECEMBER 10, 2012 MEETING UPDATE Board Meeting Minutes and Financial Reports – At every meeting, the Board reviews and approves the minutes from the previous meeting supplied by Secretary Pam Hart as well as PCNA’s financial reports. At this meeting, Treasurer Wayne Hewlett also led the discussion on drafting a budget for 2013. One of our primary financial goals for 2013 is to be able to maintain funding for the secretarial support that we have found so valuable. Strategic Plan Update – Treasurer Wayne Hewlett also volunteered to update our strategic plan – remove goals that we have completed or may no longer be appropriate. The Board will now begin identifying specific tasks needed to accomplish the remaining goals as well as time lines and who will responsible for the related activities. The Board had reviewed the suggestions submitted by attendees at the 2011 Annual Meeting and we found that our members’ suggestions were all in-line with the major goals identified in the strategic plan. 2013 Annual Meeting – Board director Sandra Graforth has been researching locations for our 2013 Annual Meeting and Mini-Medical Conference. After several years of holding the meeting in Woodland, CA, we anticipate holding the 2013 Annual Meeting in Livermore in April. Look for a ‘save the date’ announcement soon. This is always a very worthwhile event. Raising Funds for PCNA Is Easy through iGive. com – If you haven’t visited our website lately, we invite you to click on the iGive.com button on our home page. This is a reputable sight that has signed on more than 1,200 stores who will give back to PCNA as a donation a percentage of the price of items you purchase online. The percentage donated varies by store. According to iGive, the average iGive shopper raises $30 to $60 a year for their cause. Wouldn’t that be wonderful? You purchase items and gifts you already need, and PCNA benefits as well. PCNA Planning Inaugural Walk-a-Thon (and Mini-Health Fair) – In recognition of May as Neuropathy Month, the PCNA Board is planning to launch the organization’s first walk-a-thon to raise funds for the organization and awareness about neuropathy. The walk-a-thon will be held in the Sacramento area. We’ll use this year as a learning opportunity so that we can later mentor our support groups to organize their own mini-walks in their local areas so that everyone can participate in some manner. If you live in the Sacramento area we hope that you will plan to participate. ‘Save The Date’ announcement on page 8. Raising Awareness for PN – Three ‘campaigns’ we are working on to raise awareness about PN include sending information about PN and Support Group Meeting locations to: 1) all libraries in California to post on their community boards and have as a reference for patrons, 2) certified/licensed pedorthic professionals, and 3) neurologists. Professional Memberships and Corporate Sponsorships – We have updated the professional membership brochure and developed corporate sponsorships. We will be reaching out to various audiences to recruit their membership as well as corporate sponsorships to support our mission. President’s Message - Continued from page 3 helps a great deal to lose some pounds. I’ve lost 25 pounds in the last few months and have much more energy. My neuropathy is better too. Strict limiting of salt and portion size helps. My doctor gave me some assistance as well. I wish you and your family a very Merry Christmas, the happiest of new years, and enjoyment of any other holiday(s) you celebrate this time of year. A rather recent problem that I want to alert you to is that Microsoft does not call anyone. If you get a call that says they are from Microsoft or Windows Technical Department or some other line, just hang up. They are up to no good. It is a scam for which you will pay dearly. I think I’ve been called about five times in recent weeks. In this issue, please note the information on B12 and Alpha Lipoic Acid. Be sure the test for B12 level is included in your annual blood work. You and your doctor should know whether you need supplementation or not. We don’t absorb B12 as well when we are older. Low B12 is one of the causes of neuropathy. If you are not taking Alpha Lipoic Acid and have never tried it, I recommend you check with your doctor before you to take it. It is purchased over the counter but your doctor should know you are taking it. One further hint I’d like to pass along to consider in the new year is that if we are overweight, it By Karen C. Polastri, Vice President P.S. You have recently received a letter from The Pacific Chapter of The Neuropathy Association over my signature. You are a member so you either received the one saying your dues are due or the one that let you know your dues are paid. Nonmembers received a letter that offers them the opportunity of joining. All letter mentioned dues and the need for donations. It is a good opportunity to give end of year contributions. If you just joined, you may receive the incorrect letter as the lists were compiled one day and memberships could have been received after that before the mailing is sent out. INDEX TOP Video Program PCNA DVDs Available $5 each Gentle Yoga Spring Meeting 2010 Spring Meeting 2010 Special Material Dr. Ezekiel Fink on Small Fiber Neuropathy Neuropathy Action Awareness Day 2009 #1 Neuropathy Action Awareness Day 2009 #2 Neuropathy Action Awareness Day 2009 #3 Spring Meeting 2009 Dr. Peter Skaff Dr. Jeffrey Ralph For details about the program on each DVD, an order form, and handouts for some of the presentations, see our website www.pnhelp.org/resources/ audio-and-video/ Page 7 The Pacific Chapter of The Neuropathy Association NONPROFIT ORGANIZATION U.S.POSTAGE A California public benefit, nonprofit, tax exempt corporation PAID P.O. Box 276567, Sacramento, CA 95827-6567 PERMIT NO. 25 AUBURN, CA 95603 Call PCNA using Our Toll Free Phone Numbers: (877) 622-6298 • Email: info@pnhelp.org • PN Information/Advice • Support Group Inquiries (888) 556-3356 • Email: donnad@pnhelp.org • Membership Information/Inquiries • Sponsorships • General Organizational Inquiries • www.pnhelp.org A SURPRISING CAUSE OF NEUROPATHY A question was sent to Dr. Jeffrey Ralph, Director of The Neuropathy Center at U.C. - San Francisco that a member of a support group asked, “Can anesthesia, if one has multiple operations, be a cause for neuropathy?” Dr. Ralph’s answer was, “General anesthetics are not known to cause neuropathy, except for nitrous oxide (which is not widely used anymore). This is otherwise known as “laughing gas.” It was sometimes offered to patients in dentist offices as a light anesthesia. This has also been used during labor as a child is being born or for light surgery. Another use has been during major surgery in combination with oxygen and other more potent drugs. It might be likened to mercury. Children, and even adults, have been known to enjoy playing with it. However, it is highly toxic and could be the reason some have neuropathy.” The Pacific Chapter of The Neuropathy Association (PCNA) A California public benefit, nonprofit, tax-exempt corporation. Bev Anderson, Editor P.O. Box 276567 Sacramento, CA 95827-6567 (877) 622-6298 • (888) 556-3356 info@pnhelp.org • www.pnhelp.org PCNA Headquarters: donnad@pnhelp.org Our mission is to provide support, information and referral to people with neuropathy and to those who care about them, to inform and connect with the health care community, and to support research. Dues - $30 a year All contributions and dues are tax-deductible. SAVE THESE DATES The Pacific Chapter of The Neuropathy Association - Annual Conference Date: Thursday, April 11, 2013 Location: Asbury United Methodist Church, 4743 East Ave., Livermore, CA PCNA Inaugural Walk-a-thon (and Mini-Health Fair) Date: May (specific date to be determined) Location: Sacramento Area The Neuropathy Action Foundation Annual Neuropathy Action Awareness Day Date: Thursday, June 20, 2013 Location: Mr. C Beverly Hills Hotel, 1224 Beverwil Dr., Los Angeles, CA INDEX We are supported by dues-paying members, contributions by members and friends, and occasionally, small grants. This newsletter is designed for educational and informational purposes only. The information contained herein is not intended to substitute for informed medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting a qualified health care provider. The Pacific Chapter of the Neuropathy Association (PCNA) does not endorse any treatments, medications, articles, abstracts or products discussed herein. You are strongly encouraged to consult a neurologist with any questions or comments you may have regarding your condition. The best care can only be given by a qualified provider who knows you personally.
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