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Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
Question: I just found out that I have MS and my kids are 3 and 5. They are too young to understand but old enough to notice that something is wrong with mommy. Has anyone out there been through this or have any advice? I want to handle this the right way. Answer: A new diagnosis in a parent with young children is always a difficult time. Most guides are generally written for children over the age of 5, so I would suggest some modifications. It is most important to try to keep things simple for now, if possible.
Of course, your ability to follow this advice will depend on the type and severity of your problems. For most newly diagnosed parents, once you've recovered from your initial symptoms, the residual symptoms are primarily invisible, particularly fatigue. These symptoms can certainly interfere with normal parenting activities and will require some explanation to help avoid distress and behavioral changes in your children. The National MS Society has guides to help you discuss both your diagnosis and your symptoms with your children. The MSAA has books for you to read to your children (Mommy's Story, Daddy's Story) For young children, only discuss current symptoms that may alter your normal interactions with them. Avoid a large open ended discussion but make sure you answer any questions they have about MS. Keep answers brief and reassuring and ask if they understand. Since the kids are of widely different ages and maturity, have individual discussions geared to their maturity. I am sure there are many parents with MS reading these posts who may be able to provide more specific advice for you from their own experiences. Good luck and keep in touch. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Center University of California San Diego Question: I am 63 and have had MS for over 15 years. Recently I was told that my diagnosis is incorrect and that I really have small fiber neuropathy, not MS. I am so confused and need your advice. My symptoms began about 15 years ago with pins and needles sensations and burning in the feet. The symptoms would come and go and get worse in warm weather. Over time the symptoms became constant and then started all over my body. I also experience frequent odd jabbing and shock like sensations. Parts of my body are so painful to touch that having a sheet on me is unbearable. The original diagnosis of MS was made after an MRI scan of my head, but my spinal tap didn't show evidence of MS. I recently had another spinal tap by my new neurologist and it still didn't show any bands. I have been on Copaxone for years and wonder what I should do now? Answer: Your symptom description is typical of a small fiber neuropathy. While multiple sclerosis is known to cause odd sensations such as pins and needles, burning and electric shocks, these symptoms are hardly unique to MS and can be seen with any disorder that affects sensory pathways in the nervous system. Most individuals with MS will eventually develop more characteristic symptoms and findings on their exam, especially after 15 years. Since you did not mention any other non sensory symptoms or problems, I will assume that the neurologist who disagreed with the diagnosis of MS did not find any of these abnormalities. It is also not uncommon to misinterpret non specific “white spots” on MRI scans as evidence of MS. The community of MS specialists has developed partially effective descriptors of MRI abnormalities that are more typical of MS, but many neurologists and radiologists remain unaware of these guidelines. The normal spinal fluid results, especially if repeated over time, is important. Very few individuals have CSF negative Multiple Sclerosis after so many years of symptoms. Small Fiber Neuropathy is a condition selectively affecting the small unmyelinated, peripheral sensory nerves that relay information concerning pain and temperature to your brain. This type of neuropathy has many causes including diabetes and medications (cancer drugs) but a cause is never found in up to half of individuals affected with this disorder. At times people with small fiber neuropathy will have symptoms of autonomic dysfunction including dry eyes and mouth, lightheadedness on standing or spells of syncope, irregular heart beats, problems with sweating, urinary incontinence and erectile dysfunction. The diagnosis is made by a careful history and exam usually confirmed by a punch biopsy of the skin to examine the small sensory density of nerve endings under a microscope. Needless to say, the medications used to treat MS are not effective for this condition and should be discontinued. Even if an underlying cause is found, treatment consists primarily of various medications to block or modify the painful sensations. The medications commonly to accomplish this goal include the anticonvulsant class of drugs (gabapentin, pregabalin, carbamezipine, oxcarbezipine, lamotrigine and phenytoin to name a few), topical agents (lidocaine patches and capsaicin) and the tricyclic antidepressant class of medications and more modern alternatives (amitriptyline, venlafaxine and duloxetine). Revere (Rip) Kinkle Director of the UCSD Multiple Sclerosis Center PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Dr. Peter Wade is the Medical Director for Neurology at the Joyce D. and Andrew J. Mandell Center for Comprehensive Multiple Sclerosis Care and Neuroscience Research. He is a staff neurologist at the Stroke Center at Saint Francis and has been an attending neurologist at Saint Francis Hospital and Medical Center since 1990. A major interest within his practice has always been the care and treatment of multiple sclerosis, and he is pleased to be able to offer focused care in the comprehensive Mandell Center for Multiple Sclerosis. A graduate of the Tufts University School of Medicine, Dr. Wade served as an intern and resident in medicine at Saint Elizabeth’s Hospital, Boston, and as a resident in neurology at Georgetown University Hospital, Washington. He also served as a postdoctoral fellow in clinical neurophysiology at the Yale University School of Medicine. Dr. Wade is a diplomate of the American Board of Psychiatry and Neurology with board certifications in neurology and vascular neurology. He holds appointments as an assistant clinical professor of neurology at the University of Connecticut School of Medicine and a clinical instructor in neurology at the Yale University School of Medicine. Dr. Wade is a member of the American Academy of Neurology, the Connecticut Neurologic Society and a member of the Board of Directors of the Connecticut Chapter of the National Multiple Sclerosis Society. We are thrilled to welcome Dr. Wade to the HealthCare Journey team! Here is My Question: I just moved to a colder climate. The heat used to bother me but the cold is just as bad. Spasticity is getting worse. Other than staying inside all the time, what should I do? Answer: First off, I would recommend that you establish with a new MS provider now that you are in a new area. Second, it is advisable to do plenty of stretching throughout the day to help with the spasticity; however, it appears that you may need help from a local physician through the use of anti-spasmodics. Consider use of heating packs (that can be placed in the shoes or gloves) when outside in the cold is also advisable. Also make sure to wear plenty of layers with a wind-breaker to keep yourself as comfortable as possible when heading outdoors. I suspect that working with a MS clinician will help so you do not have to be a prisoner indoors during this winter. Hope this helps. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Clinic Question: I'm a caregiver for my husband who has MS and I'm struggling and need help. When I search the web, they say "accept help, get enough rest, make time for leisure, be good to myself, share my feelings with others, etc." This type of advice doesn't help because of course I know I should do these things, but that is easier said than done! Are there any classes or real help for caregivers? Answer: We checked with Matthew Farr, who is a physical therapist and manager at the Mandell Center for MS in Hartford, CT. He is a trainer for a program called POWERFUL TOOLS FOR CAREGIVERS which is a great program for caregivers of those with MS. This 6-week class (they are offered all around the country) focuses on:
The class is only once a week to make it manageable. You can call 1 (508) 719-6980 or email them to find out when classes will be held in your area. Here is another link for caregiver resources: CAREGIVER RESOURCES |
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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