A TRANSCRIPT OF THE “SMALL FIBER PAINFUL NEUROPATHY” FACEBOOK CHAT WITH DR. MARC TREIHAFT HELD ON DECEMBER 5, 2012 Neuropathy Association: Welcome! Thank you for joining us today for our “SMALL FIBER PAINFUL NEUROPATHY” Facebook chat hosted by Dr. Marc Treihaft. Dr. Marc M. Treihaft Neuropathy Association: 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 Neuropathy Association: A COUPLE OF TIPS FOR HOW THIS FACEBOOK CHAT WILL WORK: 1). If you haven't been to a Facebook chat before, here's the idea: the chat will take place on www.facebook.com/NeuropathyAssociation. 2). Given the time and technology constraints as well as the high volume of questions asked, we (The Neuropathy Association and Dr. Marc Treihaft) are unable to respond to all questions and comments. Preference will be given to those questions with widest appeal and those focusing on small fiber neuropathy. Please be sure to read through the questions, comments, and responses already posted first before asking a question. 3). Please feel free to post questions for The Neuropathy Association and Dr. Treihaft that you'd like as relates to the focus of this Facebook chat: SMALL FIBER NEUROPATHY. You can also comment on other participants’ posts and comments. Dr. Treihaft will be asking questions and sharing factoids on small fiber neuropathy too. And, be sure to chat with each other as well—make some new friends. 4). We also encourage you to comment, share, and like posts…this helps us all, collectively, to increase public awareness of and understanding for neuropathy. 1 5). Please also remember to hit the refresh button on your browser often to see updated posts and comments on this page. 6). 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. Neuropathy Association: The following articles will help guide this conversation: - Painful Feet: Small Fiber Neuropathies - http://bit.ly/SkQ7c9 - Proceedings of The Neuropathy Association’s Neuropathy Summit-Physicians Conference: A Supplement to the Journal of the Peripheral Nervous System - http://bit.ly/KN3gZx Neuropathy Association: Now, please join us in welcoming Dr. Marc Treihaft! Dr. Marc Treihaft: Glad to be here. Elyse: Are there specific tests to determine whether your SFN is “Are there specific tests to determine whether your small fiber neuropathy is autonomic?” - Elyse autonomic? Dr. Marc Treihaft: Yes, there are specific tests to determine autonomic nerve fiber involvement in patients with SFN 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. Donna: What does SFN mean? I know the neuropathy part, but what's the rest? Neuropathy Association: Donna, small fiber neuropathy (or 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. 2 Lucy: I have idiopathic small fiber neuropathy. I also continuously have positive ANA and double strand anti-DNA, but no symptoms other than painful, burning feet. I have had so many tests, but still there is no cause found. Should I have a test for a genetic cause? Dr. Marc Treihaft: Small fiber neuropathy (SFN) may be associated with inflammatory disorders. Your elevated ANA may indicate an inflammatory process. I do not recommend genetic screening based on this limited history. Jill: That's how my lupus first made its appearance. Painful, swollen, discolored toes and positive ANA. Bernadette: Wouldn't the high ANA and anti-DNA be positive for Lupus? I’m going through the possible lupus causing neuropathy syndrome. Dr. Marc Treihaft: Neuropathy certainly can be associated with lupus. High ANA and antiDNA confirms a lupus diagnosis (a high ANA can also be seen in other connective tissue diseases 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. Jodi: Is ion channel dysfunction a possible cause of SFN? If yes, how are ion channel disorders diagnosed? Lucy: I read recently about a study that showed that a large percentage of people with SFN have a defective gene. Should we have genetic testing if no other reasons have been found for our disease? Dr. Marc Treihaft: You have been keeping up on the current medical literature. 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 3 1.7 ion channelopathy is fairly new. The following is a link to sites that offer this test: http://1.usa.gov/UbC6OO. Michael: You mentioned a study showing a genetic defect in sensory nerves of patients with SFN. Was this study similar to the research previously done by Dr. Bonnie Dunbar of Baylor University? I believe she found two defective genes in SFN patients. Neuropathy Association: The 2011 study showing, for the first time, defects in the gene for sodium channels in small fiber neuropathy, causing hyper-excitability of small pain nerves, was published by a multinational group of medical researchers. For more information on the genetic basis for SFN in some patients, see the Genetics Home Reference discussion on genetic testing at: http://ghr.nlm.nih.gov/condition/small-fiber-neuropathy. Shirley M.: Is there a way to rule out small fiber neuropathy? I have “4th of July” fireworks in my feet after about five minutes and gets more intense the more I stay on my feet. Then, when I sit, the fireworks continue for a time. My doctor is not sure what it is. Is there a clear test for this type of activity? Dr. Marc Treihaft: Initiating an evaluation with a neuromuscular specialist is critical for your care. 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. I hope this information helps. Shirley: I do have L5 nerve root compression and I am having spinal fusion on Friday. My doctors do not think it is related to the L5 spondylolisthesis as I had a nerve root block that was successful for three months, but no change in symptoms in my feet. If after fusion, there is no change, then it is likely I also have SFN or possibly fibromyalgia. Jodi: My neurologist suspects I have SFN based on how I describe my symptoms, but my skin biopsy was negative, as were all the other “My neurologist suspects I have SFN based on how I describe my symptoms, but my skin biopsy was negative, as were all the other battery of tests I had to determine the cause. Does a negative skin biopsy rule out SFN?” - Jodi 4 battery of tests I had to determine the cause. Does a negative skin biopsy rule out SFN? Sicca: My neurologist says that the skin biopsy is a very sensitive test and it is not always accurate. A normal test does not necessarily mean that you don't have SFN. Is this true? I have SFN which is caused by Sjögren’s syndrome. My nerve pain is in my feet, calves, hands, head and face, sometimes even my torso, and recently the hamstring area. I am taking 3,600 mg of gabapentin and 300 mg of venlafaxine hydrochloride extended-release. I also take azathioprine and hydroxychloroquine for the Sjögren’s. Dr. Marc Treihaft: 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. Michael: Please define a full laboratory screen for the presumptive SFN diagnosis? Dr. Marc Treihaft: Initial screens include glucose tolerance test, liver function studies, blood counts, sedimentation rate, ANA screens, SSA and SSB, B12, Hepatitis screens, immunoglobulin electrophoretic patterns, ACE, HIV, and celiac studies if indicated. Kevin: Is there anything that can be done to not run out of energy so fast? Any activity I do makes me exhausted and tired? Dr. Marc Treihaft: This is an excellent question. 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. Neuropathy Association: We recently published a series of articles aimed at helping our patients better understand the link between (and cope with) anxiety, depression, sleep disturbances, and neuropathy. To read this series, visit http://bit.ly/p9UnMl. Ian: I had my second kidney transplant approximately twelve months ago after five years of 5 hemodialysis here in the UK. My neuropathy developed during this second period on dialysis. I have been diagnosed with peripheral neuropathy at my neurology department. I am currently on gabapentin. My feet are the main area affected along with my lower calves. Are there any other medications that may help to ease the tingling/shooting pain/sensations, etc.? Dr. Marc Treihaft: 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 medications 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. Beverly: Is there a causal relationship between fibromyalgia and SFN or is it a case of comorbidity if I have both? Susan: I have idiopathic SFN and was just diagnosed with fibromyalgia. Are the two one and the same or just closely related? Dr. Marc Treihaft: This question comes up in my clinic frequently. While a correlation has not been established between these disorders, 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 http://bit.ly/VTWML4. “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.” - Dr. Marc Treihaft Jodi: Will a PET CT show any possible cause of SFN (excluding the obvious occult malignancy)? For instance will a PET CT show inflammation on or around the dorsal root ganglia? From my understanding injury or inflammation in this area could explain symptoms of SFN. 6 Dr. Marc Treihaft: 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. As you mentioned, imaging may identify an occult malignancy; and in the inflammatory neuropathies—such as GuillainBarré syndrome (or GBS) and chronic inflammatory demyelinating polyneuropathy (or CIDP)--MRI may show inflammation of nerve roots. Janice: My husband has had severe burning of his buttocks upon sitting for twelve years. Needless to say, it has been a real problem. After going to several neurologists who just threw up their hands, he went to a hospital in TX where they put him on 150 mg of pregabalin twice a day and six tramadol pills a day. His pain has really gotten worse lately and he seems to have the symptoms of SFN, similar to what I have read on this site. He has begun to have tight leg muscles and a hard time walking. We haven't been able to find a doctor who can help us. Do you have any recommendations? We live between Austin and San Antonio, TX. Neuropathy Association: If travel is an option, check out our Neuropathy Centers of Excellence for specialists in your area. Be sure to also reach out to the support groups in the TX area (http://bit.ly/lao0C8) for recommendations from the group leaders and patients in your local community. Shirle: I can recommend my doctor who practices in your area: Alamo Pain Center, Dr. Joseph Gabriel, 12709 Toepperwein Road, #300, Live Oak, Texas 78233 (tel: 210-654-7246). Just take 35 South if you live near Austin, exit Toepperwein, turn left, it's the first building on the right. He's a great doctor…I highly recommend him. Neuropathy Association: Shirle, thank you for sharing this information with our community...this helps tremendously! Terry: I recently moved to Macon, GA. I was diagnosed with peripheral neuropathy while I was in NC and was wondering if you know of a good doctor in Macon? 7 Dr. Marc Treihaft: I hope you enjoy Macon…I grew up there. Please visit The Neuropathy Association’s website for its designated Neuropathy Centers of Excellence (http://bit.ly/mzOdeo) as well as a listing of neurologists: http://bit.ly/X3CJu8. Jodi: What is the best facility for finding the root cause for SFN? I have heard mixed reviews for Mayo in Rochester, Johns Hopkins, and Cleveland Clinic. Some people have good experiences; others not so much. Would you recommend one facility over another? Carole: I have been (hate to use this term but it fits) suffering with this condition now for over a year...it started in one foot and moved to the other. From all indications, it sounds like SFN... I have had no real focused diagnosis on this except the general "peripheral neuropathy"... where can I go to find a place to help me with a real diagnosis. I live in Idaho. 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: http://bit.ly/mzOdeo. Feel free to also reach out to our local support groups (http://bit.ly/j2eJAT) to connect with the group leaders and patients for local recommendations for physicians. Liz: After five years of being told I had a mental problem, I was finally sent to a professor at RPA in Sydney who did a punch biopsy and autonomic tests, following which I was diagnosed me with SFN with autonomic involvement. My symptoms started in my feet and hands, but have progressed to include my digestion, and I now have numbness in increasing patches all over. My main problem though, “My symptoms started in my feet and hands, but have progressed to include my digestion, and I now have numbness in increasing patches all over. My main problem though, and the one thing that I have the most difficulty with is hyperhydrosis all over. Are there any treatments for this symptom?” - Liz and the one thing that I have the most difficulty with is hyperhydrosis all over. I sweat profusely from everywhere, even in the middle of winter. I'm constantly wet and it's getting harder and harder to handle. Are there any treatments for this symptom? Janet: Is there anything that can be done for heat intolerance? Neuropathy Association: Read this “Ask the Doctor” feature addressing excessive sweating associated with autonomic neuropathy written by Dr. Jasvinder Chawla http://bit.ly/vb2t2l. 8 Liz: Thank you, I'll certainly check that out! Of all the symptoms this is the one id get a genie to take away if I could. It's debilitating, especially living here in Australia in summer. I no longer leave the house during the day. Brenda: Can't some of those symptoms also be a result of the medications? Dr. Marc Treihaft: Yes, some of these 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 medication, 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. Janice: My husband wakes at night dripping wet with sweats. Anyone else? Bill: The pain has been in my feet for six years since I suffered a heart attack. Will other areas be affected later, such as the cardiovascular system, digestive tract, and bladder? Michael: You mention that SFN affects “the skin, cardiovascular system, digestive tract, and bladder, among others.” Can you expand upon what other organs are affected and how so? Dr. Marc Treihaft: To address several 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. 9 - 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. - When the urinary tract is affected, symptoms may include difficulty beginning to urinate, feeling of incomplete bladder emptying, and urinary incontinence. - Other symptoms include sexual dysfunction, abnormal sweating, heat intolerance brought on by activity and exercise, and thinning of the skin (with susceptibility to bruising and poor healing). Karen: Are muscle cramps in the calf region a symptom of small fiber polyneuropathy? “Are muscle cramps in the calf region a symptom of small fiber polyneuropathy?” - Karen Neuropathy Association: There are many causes for muscle 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. Erin: I have autonomic neuropathy, and bowel dysfunction is a problem for me as well as the light-headedness from the heart rate/low blood pressure. Is there something that can help with that? Dr. Marc Treihaft: There are therapies for these symptoms you describe, Erin. I suggest speaking with a gastroenterologist for managing bowel motility issues using medications and dietary modification. The light-headedness can be managed with “I have autonomic neuropathy, and bowel dysfunction is a problem for me as well as the light-headedness from the heart rate/low blood pressure. Is there something that can help with that?” - Erin with that? - Karen adjustment of salt intake and special steroids and pressor medications under the care of your neurologist / cardiologist. Liz: Thanks for this! I've only recently found out that my bowel problems were a symptom of my SFN…I always assumed it was the meds. I'm on gabapentin and strong painkillers as well as various other medications. My disease is progressing rather quickly at the moment 10 and I am wondering if this is making me feel exhausted all the time or it's the other way around. David: My SFN and autonomic neuropathy arrived along with two sleep disorders: periodic limb movement disorder (PLMD) and hypopnea (or shallow breathing). If you have been diagnosed with SFN and/or autonomic neuropathy, I suggest getting a sleep study. While everyone is different, narcotic medication helped me sleep better. This doesn't cure SFN or autonomic neuropathy, but it eliminated some of my symptoms and the need for several other meds that I was on. Mary Kay: My husband has SFN and has been on tramadol. His neurologist has just taken him off the tramadol and started him on tapentadol extended release. Charlotte: I have hereditary sensory neuropathy for the last 13 years. My doctor suggested a spinal stimulator and pain pump because I am in constant pain. I was curious if this has been successful for others. Are people able to work after having this treatment procedure? Dr. Marc Treihaft: This is a difficult question. 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. “I have hereditary sensory neuropathy for the last 13 years. My doctor suggested a spinal stimulator and pain pump because I am in constant pain. I was curious if this has been successful for others. Are people able to work after having this treatment procedure?” - Charlotte Shirle: I had the neurostimulator implant done. My experience was not good. I tried it a year ago and my doctor is suggesting I try it again, but in a different location. I'm willing to try it again. Try the trial period. It may help for you. Jackie: I have hereditary SFN and had a spinal cord stimulator implanted a year ago. I have to say, I am a little disappointed in the results. I receive about 20% relief and take narcotics too. Patti: I know several people who have neurostimulators and love them; they wouldn't be able to do half the things they do without them! I also know a few people for whom the 11 neurostimulator didn't work. I think it really depends on the type of pain you have and how well the leads are placed; also, if you are very careful post-surgery to ensure that they do not move before they can stabilize. I think the most frustrating part is just having to keep trying different treatments to find the one that works best for you after others have failed. But you do have to keep trying because everyone responds so differently to each treatment. Good luck! Connie: I have had one for three-and-a-half years. It is a process of learning how to adjust it and seeing the reps from the company that make your stimulator. I wouldn't want to be without mine, but I waited too long to see the representative this time. Now, I can see my mistake. It is working much better at controlling my pain. I believe that I was told that it will take care of about 60% of the pain. This may be on the high side, but it is difficult to know how much it does. Donna: I have peripheral polyneuropathy; I was diagnosed in 2006. I had a spinal cord stimulator implanted…very grateful for this device. Now, my disease is spreading and I hope to find treatment for my spreading pains…neuropathy is so cruel. Lisa: I am the rare patient that had a successful trial with the stimulator and an unsuccessful surgery. This happens in about one in a thousand. I got a pain pump in August. It's helping, but I'm still using oral meds too. Neuropathy Association: Take a look at our transcript from our “Neuropathic Pain” Facebook chat hosted by Dr. Corey Hunter for additional insights on pain treatment options: http://bit.ly/LR30rI. Marla: I'm newly diagnosed. I also have CRPS (complex regional pain syndrome) and Sjögren’s. How do you feel about the use of opioids for excessive pain? I also take high doses of pregabalin and milnacipran. Dr. Marc Treihaft: I am sure that many patients with severe pain from small fiber neuropathy and other painful syndromes such as CRPS are interested in your question. Opioid medication, under close observation, may be used for severe pain symptoms in 12 conjunction with anti-depressants and anti-convulsants. Attention to dosing and side effects is critical. Bernadette: How common is SFN and erythromelalgia? Is the burning just a symptom of the SFN? Dr. Marc Treihaft: An excellent question! Erythromelalgia is a form of SFN. By definition, erythromelalgia 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 erythromelalgia. Dr. Marc Treihaft: To address several questions posed about SFN being progressive: This is a concerning question. The pain may progress for several years then stabilize. Symptoms may involve the hands and feet in a ‘stocking glove’ distribution. In some instances the pain may actually improve, but numbness persists. Unless the larger fibers become involved, weakness and imbalance are not associated with SFN. Ambulation is only affected by the pain. Laura: I have SFN. Sometimes my right hand and forearm, the one that feels like it has a glove on, gets cold as ice. I had a vascular work-up that showed the blood flow is good. Could the temperature change be related to SFN? Also, both hands and arms ache to the bone sometimes for no reason…makes me want to cry. Lora: So far my SFN is considered idiopathic by my neurologist. I do, however, have low IgG levels. Could this indicate anything? Marc Treihaft: I would direct that question to a hematologist-oncologist. The specific level and additional clinical information are important. Fiona: I have SFN. I have been taken off pregabalin due to fluid retention/ weight gain and changed to gabapentin, but I am continually knocking things over like cups of tea, dropping things and losing my balance. Would this be due to the neuropathy itself or the meds? “I have SFN. I have been taken off pregabalin due to fluid retention/ weight gain and changed to gabapentin, but I am continually knocking things over like cups of tea, dropping things and losing my balance. Would this be due to the neuropathy itself or the meds?” - Fiona 13 ” Charlotte: Fiona, I get cups with lids, I watch with my eyes when I put anything down otherwise I spill, drop, trip...I feel it is the neuropathy; we lose our sense of touch. My neuropathy is in my hands, wrist, feet, legs, up to my knees. Also, balance is a problem …we have to use our eye sight to compensate for the loss of senses, in my opinion. Marian: Do you know if this Association has a division in Canada? Neuropathy Association: Marian, we have support groups we work with in Canada, though we could use a few more support group leaders up there to help us reach all the people who are suffering...here's a list of the ones we work with: http://bit.ly/odkhQ7. Jacqueline: I am 47-years-old with diabetes and painful neuropathy. I used to walk with a walking stick, hobble to the toilet…now, I walk much better from using a light therapy, LED warmer, that I bought with a pad from Amazon. Patricia: I take no meds, drop things a lot and have horrible balance. Meds don't work, so I don't take. No need for side effects. As for pain, it is there and will always be there for me. I accept what I cannot change. Jodi: What are your thoughts on immunoglobulin (IVIG) to treat SFN? Dr. Marc Treihaft: Treatments, like IVIG, are most effective when directed at an identified cause. E.g., Sjögren’s syndrome, or acute and post-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. Dan: Pain seems to be the main issue involved with this disease and similar peripheral neuropathies. Other than simply identifying the underlying disease do you have any insight on any treatments coming down the research road concerning dealing with the horrible pain? Neuropathy Association: Neuropathic pain is a common symptom for many patients with neuropathy. The good news is that there are several pain management treatment options to 14 consider. Identifying the underlying cause of neuropathy is critical because it allows the doctor and patient to not just manage the pain of neuropathy, but also manage the underlying disease and thereby minimize the neuropathy. E.g., People with diabetes who have diabetic neuropathy can manage their neuropathy in several ways: pain management therapies specifically for diabetic neuropathy, but also with lifestyle changes that help normalize the blood sugar levels (which is what ultimately causes the nerve damage in diabetic neuropathy). WE are hopeful about the clinical trials currently in progress/recruiting volunteers to bring the next wave of therapies to our broader community. To learn more about neuropathy clinical trials, visit www.clinicaltrials.gov. Theresa: Should everyone with SFN have special glucose tests or is the fasting overnight sufficient? Neuropathy Association: Diabetes is one of many risk factors for SFN and neuropathy in general. Diabetic neuropathy and pre-diabetes is the most common identified cause of neuropathy. The estimates are that 50-70% of people with diabetes will develop neuropathy. And, many patients develop neuropathy much before they get diagnosed with diabetes because the biochemical changes that cause diabetes probably go on for years before the blood sugars reach that level. For some people, during that time, it may be enough to damage their nerves. A 2-hour glucose tolerance test is a much more sensitive measure of pre-diabetes and should be performed on anyone with an otherwise idiopathic neuropathy. Sicca: My neurologist said that gabapentin is pretty much the same as pregabalin. I am on 3,600 mg of gabapentin. Would switching to pregabalin be better as I do not think there is a higher dose of gabapentin as I believe I am on the maximum dose? Dr. Marc Treihaft: Some patients respond to one (or a combination of) medication(s) better than others, even though they are similar in action. Have you tried adding an antidepressant or topical agent? Elena: I have often experience electric shock like pain. They occur sporadically all over my body. It lasts a short time. But last week, it lasted for about 30 minutes in the same area. Is this also a symptom of SFN? 15 Dianne: I have neuropathy, and every night I have severe burning on my back…it feels like it is on fire. I can’t have clothes or covers touching it as it makes it more painful. Is that part of SFN? Dr. Marc Treihaft: This question brings up an important point about SFN. 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." Michael: What topical agents would you recommend for SFN pain? Dr. Marc Treihaft: 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 compounding therapies that help provide pain relief: http://bit.ly/O38Hmq. Modgling: I have Diabetes and peripheral neuropathy. Bad in feet and legs. I also have found out I have a paralyzed diaphragm. Can this be caused by the neuropathy? It is the only thing I can think of that would have caused it? Dr. Marc Treihaft: The diaphragm paralysis may be related in the form of a phrenic mononeuropathy. Pulmonary and neurology evaluations are important. Gary: I have polyneuropathy. I will soon be having back surgery. I have a large extrusion at L4-L5. It mainly involves the sciatic nerve. Will back surgery have any affect on the neuropathy? Dr. Marc Treihaft: It is not too unusual to have two problems affecting your legs and feet. The neuropathy itself will be unaffected by the surgery, but the surgery may alleviate back and leg pain and some of the sensory symptoms in your feet. Gary: Thank you! The surgery is laminectomy and fusion. 16 Tina Ann: Is neuropathy genetic and can i pass it to my children? I have idiopathic peripheral neuropathy and I fear my son is starting to show signs of this now and he is only six-years-old. Thank you! Dr. Marc Treihaft: There are some forms of neuropathy that are genetic. A percentage of idiopathic neuropathies are also felt to be genetic. Please bring your son’s symptoms to the attention of the neuropathy specialist. Please do not assume he has neuropathy, as there may be other causes of his symptoms that need to be evaluated. Neuropathy Association: 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. Marc Treihaft: Thank you for joining us this evening for this important chat. I wish I could answer all the questions…hopefully, we have offered some insight! Neuropathy Association: A transcript of this Facebook chat will be published in the coming weeks on www.neuropathy.org. Thank you again for participating in this event and for helping raise the public profile, and understanding, of neuropathy! To learn more about the efforts of The Neuropathy Association to bring help, hope, and healing to the neuropathy community, visit www.neuropathy.org. 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 email notices here - http://bit.ly/kVs4qZ. Neuropathy Association: Our mission is to bring help, hope, and healing to the neuropathy community. To do this, The Neuropathy Association offers programs that: increase awareness of neuropathy’s scope and impact; promote and expand cutting-edge scientific research; provide patient and physician education and advocacy to improve neuropathy care; and organize national and local patient support programs. As a nonprofit 501(c)3 charitable organization, we rely on donations from individuals in the neuropathy community to continue our mission-focused initiatives 17 that millions impacted by a neuropathy diagnosis rely on. We receive no government funding and limited corporate support. To learn more and support our mission, visit www.neuropathy.org. Disclosure: The information provided in this transcript 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. ©2012 The Neuropathy Association. All rights reserved. All material in this e-newsletter is property of The Neuropathy Association and isprotected by copyright law. Reproduction of content requires express permission from The Neuropathy Association. 18
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