Neuropathy Hope. SMALL FIBER PAINFUL NEUROPATHY FACEBOOK CHAT WITH DR. MARC TREIHAFT, DECEMBER 5, 2012 (A condensation)

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1 Neuropathy Hope Hope through caring, support, research, education, and empowerment A newsletter for members of the Pacific Chapter of The Neuropathy Association (PCNA) June 2013 Issue 6 Volume 11 Small Fiber Painful Neuropathy Facebook Chat PCNA Support Groups President s Message 2013 Walkathon Neuropathy Action Awareness Day Conference PN Literature Review How You Can Help At Support Group Meetings Pacific Chapter of The Neuropathy Association P.O. Box Sacramento, CA info@pnhelp.org SMALL FIBER PAINFUL NEUROPATHY FACEBOOK CHAT WITH DR. MARC TREIHAFT, DECEMBER 5, 2012 (A condensation) Dr. Marc M. Treihaft is medical director of the Colorado Neurological Institute s Neuromuscular and Peripheral Nerve Disorders Center. He is also a professor of Neurology at the University of Colorado Health Sciences Center. Dr. Treihaft also serves as the medical advisor for The Denver Chapter of The Neuropathy Association. DISCLAIMER: The information provided in this Facebook chat is intended for use as general health and wellness information. It is not intended to replace the personal medical advice of your health care provider. Please discuss all treatment, lifestyle, and diet choices with your health care provider. (Through this chat, many people ask questions. This is what was condensed. For the most part, only what Dr. Treihaft said is used as the answer encompasses the question.) Dr. Marc Treihaft is asked, Are there specific tests to determine whether your SFN (Small Fiber Neuropathy) is autonomic? and answers: Yes there are specific tests to determine autonomic nerve fiber involvement in patients with Small Fiber Neuropathy that are available through special clinics. Quantitative sudomotor axon reflex testing (or QSART) measures sweat output. - Tilt table test measures changes in blood pressure and pulse from when you are prone (lying down) to when you are vertical (standing up). - Cardiac beat-to-beat or R interval variation studies the autonomic aspects of cardiac function. Small Fiber Neuropathy (SFN) is a form of neuropathy resulting from damage to the small myelinated and unmyelinated peripheral nerve fibers and/or autonomic nerve fibers that transmit messages to the skin, the cardiovascular system, digestive tract, and bladder, among others. Small Fiber Neuropathy (SFN) may be associated with inflammatory disorders. Elevated ANA may indicate an inflammatory process. I do not recommend genetic screening based on limited history. Neuropathy certainly can be associated with lupus. High ANA and anti-dna confirms a lupus diagnosis (a high ANA can also be seen in other connected disease such as rheumatoid arthritis and scleroderma). The approach to your health issues is to first obtain an opinion with a rheumatologist to establish the diagnosis of lupus and the degree of disease activity; then, determine the relationship of neuropathy to lupus. If your neuropathy is attributed to Lupus, treatment is directed to Lupus with supplemental neuralgic therapies. A study published last year demonstrated a genetic defect, a sodium channel abnormality in sensory nerves of patients with SFN. Approximately 50% of SFN patients may have glucose intolerance. Of the remaining 50%, approximately 1/3 may have this genetic defect. Additional studies are in progress. This is exciting research that has potential for discovering new treatments. The genetic testing for the Na 1.7 ion channelopathy is fairly new. The following is a link to sites that offer this test: Initiating an evaluation with a neuromuscular specialist is critical for someone with pain in their feet upon standing and it goes away slowly when they sit down. This includes a consultation with history and physical examination, followed by laboratory screens, and EMG and nerve conductions studies. Depending on these results, a small fiber biopsy (a small skin punch biopsy) provides important information for this diagnosis. A negative skin biopsy does not necessarily exclude small fiber neuropathy. There are also other causes of numbness, tingling, and pain. I recommend additional evaluation in these cases. Initial screens include glucose tolerance test, liver function studies, blood counts, sedimentation rather, ANA screens, SSA and SSB, B12, Hepatitis screens, immunoglobulin electrophoretic patterns, ACE, HIV, and celiac studies if indicated. Continued on page 5

2 Roster of Our PCNA Information and Support Groups 2013 PCNA Board of Directors Bev Anderson President Karen Polastri Vice President Pam Hart Secretary Sandra Grafrath Director Michael Green Wayne Hewlett Arvin Magusara Casimir Sammanasu Sandra Vinson Dick Ward Please contact your group leader or check your local paper to find out about the topic/speaker for the upcoming meeting. Bev Anderson Editor Newsletter Design by Page 2 Diane Blakley Designs CALIFORNIA Alturas Antioch-Brentwood 3 rd Wednesday, 2PM Sand Creek,1D Kaiser-Permanente 4501 Sand Creek Rd. Antioch L.D. Wright (925) Auburn 1 st Monday, 11:00 AM Woodside Village MH Park Luther Road Sharlene McCord (530) Bakersfield 3 rd Wednesday, 1:30 PM Stockdale Moose Lodge 905 S. Stine Rd. David Wollard (661) Berkeley 3 rd Wednesday, 3 PM N Berkeley Senior Ctr 1901 Hearst Ave. (corner of MLK) Johnetta Smallwood (510) Carmichael 2 nd Tuesday, 1:30 PM Eskaton 3939 Walnut Ave. Karen Robison (916) Call Karen before coming as it is a gated community and sometimes the day/time changes. Castro Valley 2 nd Wednesday, 1:30 PM First Presbyterian Church 2490 Grove Way (next to Trader Joe) Judson Leong (510) Speaker: Bev Anderson PCNA President Clearlake For information, call Barbara Dryden at (707) Concord 3 rd Thursday, 1:30 PM First Christian Church 3039 Willow Pass Road Wayne Korsinen (925) Crescent City Call Bev Anderson for information (877) Davis 2 nd Tuesday 3:30-5:00 PM Davis Senior Center 646 A Street Mary Sprifke (530) Elk Grove 2 nd Tuesday, 1 PM Elk Grove Senior Center 8830 Sharkey Avenue Roger White (916) Eureka Earlene (707) Folsom 3 rd Monday, 1:00 PM odd numbered months Journey Church 450 Blue Ravinme Rd. Fort Bragg Betty Adams (707) Fresno 3 rd Tuesday, 11:00 AM Denny s Restaurant 1110 East Shaw Marvin Arnold (559) Garberville Grass Valley 2 nd Monday, 1:30 PM GV United Methodist Church 236 S. Church Street Salli Hearn (530) Jackson Lakeport 2 nd Monday, 10:30AM Lakeport Senior Center 507 Konocti Avenue Grace Gault (707) Lincoln Call Bev Anderson for information (877) Livermore 4 th Tuesday, 10 AM Heritage Estates 900 E. Stanley Blvd. Sandra Grafrath (925) Madera For information call Leo Trzepowski (559) Merced 2 nd Thursday, 1 PM Central Presbyterian Church 1920 Canal Street (The Hoffmeiser Center across the street from the church) Larry Frice (209) Modesto 3rd Monday, 10:30 AM Trinity United Presbyterian Church 1600 Carver Rd., Rm. 503 Monte Schrader (209) Monterey 3 rd Wed.,10:30 AM odd numbered months First Presbyterian Church 501 El Dorado Street Don & Ann Trout (831) Napa 1 st Thursday, 2 PM Napa Senior Center 1500 Jefferson Street Ron Patrick (707) bonjournapa@hotmail.com Oakland 1 st Thursday, 1 PM Grand Ave. 7 th Adventist Church 278 Grand Ave. Kathleen Nagel (510) Oxnard Kathleen Denson (805) Placerville Call Bev Anderson for info (877) Redding Redwood City 4 th Tuesday, 1 PM Sequoia Hospital Health and Wellness Center 749 Brewster Avenue Stan Paschote (510) Roseville 2 nd Wednesday, 1PM odd numbered months Sierra Point Sr. Res Foothills Blvd. Sacramento 3 rd Tuesday, 1:30 PM Northminster Presby. Church 3235 Pope Street Charles Moore (916) Salinas Contact Bill Donovan (831) San Francisco 4 th Thursday, 10 AM UC-San Francisco Med Ctr. 400 Parnassus Avenue Amb. Care Ctr. 8th Flr., Rm A888 Y-Nhy (e nee) Duong Nhy-y.duong@ucsf.edu San Jose 3 rd Saturday, 10:30 AM O Conner Hospital 2105 Forest Avenue SJ DePaul Conf. Rm. Stan Pashote (510) San Rafael 3 rd Wednesday, 1 PM Lutheran Church of the Resurrection 1100 Las Galinas Avenue Scott Stokes (415) Santa Barbara 4th Saturday, 10 AM odd numbered months No Meeting in June Shirley Hopper (805) Continued on page 3

3 PCNA Information and Support Groups continued from page 2 Santa Cruz 3 rd Wednesday, 1PM odd numbered months Trinity Presbyterian Church 420 Melrose Avenue Mary Ann Leer (831) maleer@comcast.net Santa Maria 2 nd Tuesday, 12:00 Noon Elwin Mussel Senior Center 510 Park Street Wanda (805) Mary (805) Santa Rosa 1 st Thursday, 10:30 AM Santa Rosa Senior Center 704 Bennett Valley Road Willie Quarante (707) Sonoma 1 st Friday, 10:30 AM Vintage House 264 First St., East Joann Bertolucci (707) Sonora For information call Stockton 3 rd Tuesday, 1 PM St. Andrew Lutheran Church 4210 Claremont Avenue (at March Lane) Jerry Elliot (209) Susanville Truckee Tulare-Visalia Cathy Moriarity (559) or Esther Hoover (559) Turlock 3 rd Monday, 1 PM Covenant Village Adm. Bldg. Classroom 2125 N. Olive Street Dee Muhlenbruch (209) Ukiah Last Thursday, 5:30 PM North Coast Opportunities (NCO) 413 N. State St. Shirley Blattner (707) Carole Hester (707) Walnut Creek 4 th Friday, 10 AM Rossmoor, Hillside Clubhouse Las Trampas Room Carolyn Cash (925) West Sacramento No meeting until new leader is found Sandra Vinson (916) slvins11@gmail.com Woodland 1 st Tuesday, 1:30 PM Woodland Comm. & Senior Center 2001 East Street Elizabeth Chaudhry (530) President s Message By Bev Anderson Last month, I mentioned the trip to Oregon. This month I want to tell you about it. We, my friend Ginny and I, enjoyed the trip and meeting many wonderful people who have neuropathy. They all wanted to know about what it is and what they can do about it. Our first meeting was in Yreka, CA on April 18. This group hasn t met for many months as the leaders couldn t continue and no one stepped forward to take their place. I am hopeful that the group will soon reactivate. Several people volunteered. In Medford, OR we have a team starting to organize a support group as is also true in Roseburg, OR. (Here we met at Elmer s Restaurant and discovered this chain, mostly in Oregon. We recommend it.) I think there is a good chance for a support group to form in Eugene, OR and Corvallis, OR. In Salem, OR we met Michael Siebler, the leader of our group and what a delight that was. He knows much about neuropathy and works well with people. A sizable group came who may be a good deal of help for him in building the group. From here, we went on to Portland, OR. Not many people found the ad in the Oregonian, but we have had some inquiry since. It looks like Portland, OR may be the first group to form of all those currently organizing. Thanks to Terry Thompson who was leader of a small group and is serving as a resource person for the gentleman who is taking the lead. We left Portland, OR and headed to Astoria, OR. In Astoria, OR we had a challenge we hadn t faced before or after the newspaper lost track of the days and had it ready to print on the day of the meeting. The meeting was at 10:00 AM, the paper was delivered in the afternoon. Needless to say, no one attended. We hope to find a way to have a meeting there before too long. My companion, Ginny, has studied the explorations of Lewis and Clark for many years. The Lewis and Clark National Park including the fort he used is in Astoria, OR. Yreka For information call Yuba City-Marysville 2 nd Tuesday, 10:30AM St. Andrew Presbyterian Church 1390 Franklin Rd. (next to Winco Shopping Center) Ken Lux (530) NEVADA Reno-Sparks For information call Continued on page 7 OREGON Salem 3 rd Monday, 6:30 PM Community Health Education Center Salem Hospital Campus, Bldg. D 890 Oak Street SE Brookings For information, call Robert Levine (541) Portland For information, call Joe Mozena (503) Start a support group in your area: Contact Bev Anderson at (877) or info@pnhelp.org Help With Health Care Challenges If the number is not in your area, call the one listed and ask for the right number. Medicare The Affordable Health Care Act For current information go to HICAP Health Insurance Counseling for seniors and people with disabilities. /HICAP/ Call (800) 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) or TDD (916) In Sacramento, (916) HMO Help Center Assistance 24 hours a day, seven days a week. (888) HMO-2219 or (877) 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 and click on Projects. Page 3

4 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: or HealthLight Infrared Light Therapy equipment - 10% off Single Boot System $999 and Dual boot system $1759 Contact: or Auburn The Footpath 825 Lincoln Way Auburn, CA (530) PCNA Discount: 10% off the regular price shoes. Elk Grove Shoes That Fit 8649 Elk Grove Blvd. Elk Grove, CA (916) PCNA Discount: 20% off the regular price shoes. Fortuna Strehl s Family Shoes & Repair Corner of 12th & Main 1155 Main Street Fortuna, CA (707) Marilyn Strehl, C.PED is a Certified Pedorthic PCNA Discount: 10% off the regular price shoes. Continued on page 5 Page 4 STEP UP FOR NEUROPATHY The Pacific Chapter of the Neuropathy Association 2013 Walk-A-Thon 2013 Inaugural Walkathon...beautiful day...tranquil setting...plenty of shade and seating Sunday May 19th 2013 Walkathon s youngest walker, Riley Sparks, was all smiles. Thank you to our walkers! Walkers enjoyed the mini-health fair! Thank you to our sponsors! Dawson Services Occupational Therapy Association of California Orangevale Glass Co. Sierra College/Rocklin Tracy Brown/ARC

5 Small Fiber Painful Neuropathy Facebook Chat With Dr. Marc Treihaft continued from page 1 The pain of neuropathy may keep you awake at night. This is one thing that contributes to the feeling of exhaustion. This in turn can affect your energy, concentration, and mood. Review your sleep patterns with your physician for other causes of sleep disturbance. Side effects of pain medications may contribute to fatigue. The omnipresent pain also saps your energy. (The Neuropathy Association recently published a series of articles aimed at helping patients better understand the link between (and cope with) anxiety, depression, sleep disturbances and neuropathy. To read this series, visit Treatment of neuropathy in the setting of renal disease is approached cautiously. The amount of gabapentin prescribed is lower (compared to the amount prescribed to a person who does not have chronic kidney disease) depending on kidney function tests. Anti-inflammatory medication may affect kidney function and are therefore not indicated. Talk with your doctor to determine if antidepressant medications and topical agents will help provide additional pain relief. While a correlation has not been established between SFN and fibromyalgia, many patients with fibromyalgia complain of sensory symptoms, certainly raising this question. A new research study was presented at the recent American College of Rheumatology s annual meeting showing majority of patients with fibromyalgia and neuropathic pain were diagnosed with small fiber neuropathy based on reduced epidermal nerve fiber. To read more about this study, visit Dorsal root involvement is implicated in the more widespread small fiber ganglionopathy. This is felt to be inflammatory in some cases and treated with immune therapies (IVIG). Herpetic neuralgia is caused by a virus in the DRG. Imaging is not sensitive enough in most instances for the DRG involvement. Imaging may identify an occult malignancy; and in the inflammatory neuropathies - such as Gullain Barre syndrome (or GBS) and chronic inflammatory demyelinating polyneuropathy (or CIDP) MRI may show inflammation of nerve roots. (Neuropathy Association: We have a network of 15 Neuropathy Centers of Excellence across the U.S.; you may want to consider accessing one of them for a second opinion in evaluating and treating your small fiber neuropathy. Feel free to also to reach out to our local support groups ( to connect with the leaders and patients for local recommendations for physicians. Read this Ask the Doctor feature addressing excessive seating associated with autonomic neuropathy by Dr. Jasvinder Chawla Some symptoms can be a side-effect of medications as well. That is why it is important to share new symptoms any symptoms you feel are new, resulting possibly from starting new medications, etc. with your doctor so he/she can determine if it results from the medication, or from neuropathy, or from something else going on in the body. To address questions related to what areas of the body SFN affects, it is important to understand what small nerve fibers are and which parts of the body they send messages to (small nerve fibers transmit messages to the skin, the cardiovascular system, digestive tract, and bladder). Small fiber neuropathy refers to disorders of the peripheral nerves that primarily affect the small unmyelinated nerve fibers, autonomic fibers, or both, resulting in sensory changes and autonomic dysfunction when both types are involved. The symptoms vary depending on the degree and type of nerves affected; they usually develop gradually over time. When the digestive system is affected symptoms include constipation, diarrhea, feeling full with only a few bites after eating, and vomiting of undigested food. When the heart and lungs are affected, symptoms may include blood pressure changes with position causing dizziness when standing and shortness of breath with activity and/or exercise. Other symptoms include sexual dysfunction, abnormal sweating, heat intolerance brought on by activity and exercise, and thinning of the skin (with susceptibility to bleeding and poor healing). (Neuropathy Association: There are many causes for muscles cramps (e.g. overuse of a muscle, dehydration, nerve and muscle disorders, too little potassium, calcium, or magnesium in your diet ) It is important to check in with your doctor to determine what s causing the muscle cramps and treat them accordingly. In some instances a cause for the cramps will not be identified. Equally frustrating is the lack of a good treatment.) There are therapies for these symptoms. I suggest speaking with a gastroenterologist for managing bowel motility issues using medications and dietary modification. The light-headiness can be managed with adjustment of salt intake and special steroids and pressor medications under the care of your neurologist/cardiologist. Many patients at the end of their ropes pain is intolerable and nothing seems to work. Spinal stimulators purportedly provide pain relief as a last resort. This has been reviewed with mixed results for many pain syndromes. (Neuropathy Association: Take a look at our transcript from our Neuropathic Pain Facebook chat hosted by Dr. Corey Hunger for additional insights on pain treatment options: I am sure that many patients with severe pain from small fiber neuropathy and other painful syndromes such as CRPS are interested in getting Continued on page 7 DISCOUNTS FOR PCNA MEMBERS Continued from page 4 Sacramento Midtown Comfort Shoes 3400 Folsom Blvd. Sacramento, CA (916) 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) Nails (916) 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) or info@pnhelp.org. We ll mail an agreement form to the business, and once we have it, we ll add them to this list. Page 5

6 NAF 7TH ANNUAL NEUROPATHY ACTION AWARENESS DAY CONFERENCE Thursday, June 20, 2013 Mr. C Hotel Beverly Hills, 1224 Beverwil Drive, Los Angeles, CA About the NAF The Neuropathy Action Foundation (NAF), a 501(c)(3) nonprofit, is dedicated to ensuring neuropathy patients obtain the necessary resources, information and tools to access individualized treatment to improve their quality of life. The NAF increases awareness among physicians, the general public and public policy officials that neuropathy can potentially be a serious, widespread and disabling condition, which may be treatable when appropriate medical care is provided. The NAF s goals include: Patient Empowerment: The NAF educates and assists neuropathy patients on how to become informed advocates for their healthcare. Public Awareness and Physician Education: The NAF actively supports programs that create public and physician awareness of neuropathy, the use of IVIG and other remedies to improve patient care. The NAF will cover valet parking for all attendees. Please let the valet attendant know you are a guest of the Neuropathy Action Foundation. 9:30 10:00 Registration and Exhibits 10:00 10:15 Welcome and Overview TBD 10:15 11:00 Partnering with Your Doctor: Asking for Help Mazen Dimachkie, MD, Professor, University of Kansas Medical Center 11:00 11:30 Making Sense of Medicare Anita Chun, Center For Health Care Rights 11:30 12:00 Break and Exhibits 12:00 1:15 Lunch Program Living With and Beating Diabetic Neuropathy: A Hollywood Celebrity s Journey Jerry Mathers, American television, film, and stage actor. Best known for his role in the television series Leave It to Beaver, in which he played Beaver Cleaver. Neuropathy Action Foundation Update Dominick Spatafora, President, Neuropathy Action Foundation Pacific Chapter of the Neuropathy Association Update Bev Anderson, President, Pacific Chapter of the Neuropathy Association You Are Our Hero Award and Legislator of the Year Award TBD 1:15 1:45 Diet, Health & Nutrition: Tips From a Hollywood Celebrity Nutritionist Lisa De Fazio, MS, RD, Hollywood Media Dietitian, Television Host and Spokesperson 1:45 2:15 The Whole Body Experience: Neuropathy from Head to Toe Todd Levine, MD, Clinical Assistant Professor, University of Arizona 2:15 2:45 The Human Element: No Excuses for Blood or Plasma Shortages Elaine Rock, Director of Plasma Recruitment, BloodSource 2:45 3:15 Refreshments and Exhibits Break 3:15 3:50 Neuropathic Pain and Pain Treatments Sean Mackey, MD, Ph.D., Chief, Division of Pain Management, Stanford University (Invited) 3:50 4:30 Traumatic Neuropathies and Nerve Repair Jeffrey Ralph, MD, Associate Clinical Professor, University of California, San Francisco Several full information registration forms will be sent to each group leader. If more are needed they can be copied. You can find all the information on our website While there you can also check out the PCNA Annual Conference and the PCNA Walka-thon s information pages as well. All are listed on the Events tab. 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: 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 Page 6 see a one paragraph abstract of the article appear, as well as links to related articles. This month s PMIDs: A French study demonstrating that rtms (repetitive transcranial magnetic stimulation) significantly reduces neuropathic pain in 79% of peripheral neuropathy patients 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% 0f the control group required surgery This Kuwaiti study found that those Type 2 diabetics with peripheral neuropathy had significantly lower vitamin D levels than those without. Further study assessing vitamin D as a preventive is suggested This review article presents evidence from a number of studies revealing (Lyrica ) and an opioid, cox inhibitor, or antidepressant greater than with any of these agents singly.

7 Small Fiber Painful Neuropathy Facebook Chat With Dr. Marc Treihaft continued from page 5 help. Opioid medication, under close observation, may be used for severe pain symptoms in connection with anti-depressants and anti-convulsants. Attention to dosing and side effects is critical. Erythromelagia is a form of SFN. By definition, erythromelagia is a condition characterized by episodes of pain, redness, and swelling in various parts of the body, particularly the hands and feet. Treatments are similar for the pain; a cool environment and NSAIDS may also be used for erythromelagia. To address several questions posed about SFN being progressive: This is a concerning question. The pain may progress for several years and then stabilize. Symptoms may involve the hands and feet in a stocking glove distribution. In some instances the pain may actually improve, but numbness sensory symptoms in your feet. persists. Unless the larger fibers become involved, weakness and imbalance are not associated with SFN. Ambulation is only affected by the pain. genetic. Treatments, like IVIG, are most effective when directed at an without guessing what it is. identified cause, e.g., Sjogren s syndrome, or acute and post Neuropathy Association: infectious ganglionic forms of small fiber sensory, chronic inflammatory demyelinating polyneuropathy (or CIDP), and multifocal motor neuropathy (MMN). There are reports of response to IVIG in the idiopathic group, but the evidence is inconclusive. Some patients respond to one (or a combination of) medication(s) better than others, even though they are similar in action. You can consider adding an antidepressant or topical agent. SFN does not just involve the hands and feet. Some patients experience widespread involvement indicative of a variant of SFN frequently overlooked (and unfortunately misdiagnosed as a psychiatric problem). The SFN biopsy is useful for this form of SFN or ganglionopathy. Capsaicin and lidocaine patches/ointment are two examples of topical agents. Be sure to read through the transcript from The Neuropathy Association s Neuropathic Pain Facebook Chat with Dr. Corey Hunter for additional information about topical agents and corresponding therapies that help provide pain relief. The diaphragm paralysis may be related in the form of a phrenic mononeuropathy. Pulmonary and neurology evaluations are important. It is not too unusual to have two problems affecting your legs and feet. The neuropathy itself will be unaffected by the surgery (for a surgery in L4, L5 involving the sciatic nerve), but the surgery may alleviate back and leg pain and some of the There are some forms of neuropathy that are genetic. A percentage of idiopathic neuropathies are also felt to be An indication of neuropathy must be evaluated Dr. Treihaft, thank you for giving your time and expertise to speak with our community and raise awareness of small fiber neuropathy and neuropathy/ neuropathic pain in general. Dr. Mark Treihaft: Thank you for joining us on this evening for this important chat. I wish I could answer all of the questions hopefully, we have offered some insight. Neuropathy Association: To receive a copy of the transcript, as well as upcoming neuropathy events and programs offered by The Neuropathy Association, be sure to sign up for our notices here (Used with permission of The Neuropathy Association) President s Message - Continued from page 3 She had dropped me off for the meeting and went to explore. When no one appeared for the meeting, she came back to get me and we had a chance to explore a bit. From there we went down the coast to Tillamook, OR for an afternoon meeting. (They do make cheese in Tillamook. We visited the tourist frequented factory.) It was on to Newport, OR for a morning meeting and, then, to Florence, OR. It looks like there will be a great group in Florence, OR as several volunteered to form the leadership team. Coos Bay, OR was our next stop. A good group came, but no one indicated a desire to help get a group started. That may change. The grand culmination of the Oregon portion of the trip was in Grants Pass, OR on April 29. A large group turned out and eight people stayed to talk about a support group. I m confident that we ll see a group there. On the April 20, Ginny went home to Eureka, CA and I held a meeting in Redding, CA (where I had left my car). The leader there had had to resign due to health reasons. We listed the meeting in the newspaper. A fairly small group came and I was pleasantly surprised when it turned out that almost everyone there said they could come together to form a group. These were retired and active business people from the community that know how to lead a group. So I came away encouraged. I drove home from Redding, CA on May 1. It took me five hours. I hadn t remembered it had taken that long to get there. Without a leadership team a group cannot start or continue. It is very important that you be ready to help whoever is in a leadership position. Keeping your group going and growing is the responsibility of each one that attends. You get out of something what you put into it, and more. I have found this very true of support groups during the past 15 years that I have been starting groups and working with the people in them. See how you can help at Support Group Meetings page 8 Page 7

8 The Pacific Chapter of The Neuropathy Association A California public benefit, nonprofit, tax exempt corporation P.O. Box , Sacramento, CA Call PCNA using Our Toll Free Phone Numbers: (877) info@pnhelp.org PN Information/Advice Support Group Inquiries (888) donnad@pnhelp.org Membership Information/Inquiries Sponsorships General Organizational Inquiries NONPROFIT ORGANIZATION U.S.POSTAGE P A I D PERMIT NO. 25 AUBURN, CA MARK YOUR CALENDARS FOR THIS GREAT EVENT! Thursday, June 20, 2013 The Neuropathy Action Foundation s Annual Neuropathy Action Awareness Day Los Angeles, CA How You Can Help at Support Group Meetings Every little bit helps offer to contact and make arrangements with a speaker serve as greeter to be sure everyone is welcomed and pass out name tags (if these are used) as the sign-in sheet is passed around, encourage people near you to sign it with complete contact information be sure the container for contributions is put out and picked up after the meeting (if your group asks for optional donations) purchase and/or coordinate the snacks (if your group offers such) call to remind members about the meetings ask the Support Group Leader what they most need help with NEUROPATHY ACTION FOUNDATION CONFERENCE A few more days remain to register for this conference being held this year in Los Angeles. The schedule has been in the last several newsletters plus it is on page 6 so you can easily review it again. The whole package is also on our website: Please check it out if you are interested in attending. Thursday, June 20, 2013 Mr. C Hotel Beverly Hills, 1224 Beverwil Drive, Los Angeles, CA The Pacific Chapter of The Neuropathy Association (PCNA) A California public benefit, nonprofit, tax-exempt corporation. Bev Anderson, Editor P.O. Box Sacramento, CA (877) (888) info@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. We are supported by dues-paying members, contributions by members and friends, and occasionally, small grants and fundraisers. 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. Page 8

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