Columns What's Important Now -- An MS Column by Ian Franks Is MS hereditary? Yes, According to New Study Is MS hereditary? Yes, According to New Study by admin | June 9, 2016 Share this article: Share article via email Copy article link Some forms of multiple sclerosis are hereditary after all. After many years of saying that MS is not passed down the generations, new research now says the opposite. Although past studies have suggested that genetic risk factors could increase the risk of developing the disease, up until now, there has been no evidence that the disease is directly inherited. Prof. Carles Vilariño-Güell. Researchers from the University of British Columbia and Vancouver Coastal Health, in Canada, led by Prof. Carles Vilariño-Güell, report that they have proven that multiple sclerosis can result from a single genetic mutation on a gene called NR1H3. This, they say, produces a protein that acts as an “on-off switch” for other genes. In the study’s results1, published in the journal Neuron, the researchers explain that some of the other genes either work to stop myelin-damaging inflammation or create new myelin to repair the damage. Myelin, often described as the protective layer that protects nerve tissues, is the fatty material that surrounds neurons and helps send electrical signals. When myelin is damaged, it disrupts the communication between the brain and the rest of the body, producing well-known MS symptoms including vision problems, muscle weakness, balance issues, and cognitive impairments. MS hereditary gene mutation is key The researchers say their findings could help develop therapies that either target the NR1H3 gene or that neutralize the mutation’s effects. Just 1 in 1,000 people with MS have this specific mutation, according to the researchers. However, the finding uncovers the biological pathway that leads to the rapidly progressive form of MS, which accounts for 15% of people with the disease. Prof. Vilariño-Güell said: “This mutation puts these people at the edge of a cliff but something has to give them the push to set the disease process in motion.” The team believes that its discovery could improve understanding of the more common relapsing remitting MS. This is because it typically develops into the secondary progressive type. Following on from the study, the researchers say that screening for this particular mutation in individuals at risk for MS could make it easier to diagnose it earlier and begin treatment before the onset of symptoms. For example, if individuals with a family history of the disease carry the mutation, they could opt to increase their vitamin D intake; low levels of the vitamin have been linked to MS. 1 To arrive at their findings, the researchers used blood samples taken from 4,400 people with MS and 8,600 blood relatives as part of a 20-year project funded by the MS Society of Canada and the Multiple Sclerosis Scientific Research Foundation. They found the mutation in two Canadian families in which several members had a rapidly progressive type of the disease. In these families, two-thirds of the people with the genetic mutation developed MS. https://news.ubc.ca/2016/06/01/ubc-vancouver-coastal-health-scientists-find-genetic-cause-of-multiple-sclerosis/ Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this blog article are not those of Multiple Sclerosis News Today and are intended to spark discussion about issues pertaining to Multiple Sclerosis. Print This Page Comments Roslyn Accardo I am 62 years old. A Mother of a Son who supposedly has MS. My gut tells me there is a sort of internal parasite, of which I suffer, which has not been identified. This has caused incredible stomach pain for a number of years now since he was in Europe studying. No one can figure this out. He can't eat without pain...every test you can think of. No results. However, now at my age, I wake up with shaking hands, my legs jump, an inner agitation, and only valium will allow me to get back to sleep. I know he needs help from someone to identify this horrific stomach issue. However, I don't know where to go. He does take Copaxone. The MRI showed no new signs of lesions. I still don't believe that an undetermined bacteria of some sort is causing this,or at least contributing. However, my symptoms described above, within the last two years, lends pause. Please advise. I would like to get my Son together before I am not here anymore. I do feel there is something wrong with me...scary, not determined. Did I pass this on (ms) do I have it? Who cares at this point as far as I am concerned, or is there some physician who specializes in bacterial infections not yet determined by the usual tests to whom I can reach out to help him at least. He has had everything internally done...no positives. Yet, he suffers terribly every day. Please advise. Thank you. I know this is without merit, however, sometimes, a Mother just knows. She just knows. Reply CityGal I don't know where you live, but in the San Francisco there are specialists in bacterial infections at UCSF. I love UCSF. They are amazing. I'm sure there are bacterial specialists at any major medical center, though. Reply Stephanie My daughter had really bad stomach pain for a few years. We took her out of all stressful things ( school) and after 4 months she is doing so much better. It could be something that is stressing your son out really bad. I would still try and find doctors to help and make sure it is not an unknown bacteria. Sometimes a show is on Animal Planet about things living inside of you. Maybe check into that and see if you can find doctors through them. Reply Mary Bennett Roslyn Accardo, I had the eating problem also, & it took 7 years for them to figure it out. Had my gall bladder removed, & didn't help. Finally got a great doc who did an ERCP, & found out my common bile duct wasn't opened, & had to just snip it open.to drain. Had to have it done a year later. That was in the mid nineties, & starting to have the problem again. Seeing this doc again soon! Reply Cindy Do a little research into Leaky Gut Syndrome. I believe the types of foods in our modern processed food diet is attributed to many health conditions. We can do a lot of healing by eating unprocessed foods from natural sources grown in pure, rich soils and animal protein sources that have been fed the same. Reply Katherine You are so right!!!! MS is not hereditary, it's an autoimmune disease! The food we eat causes more health problems & doctors aren't interested in curing only medicating! It's all about money not TRUTH anymore! Common sense! Reply Shelia Carpenter Both my sisters and I all have MS. 2 of us have pernicious anemia which causes a B12 deficit. Our mother had Parkinson's Disease. Our mother also had a B12 deficit. I was reading ahead just a little. I also had an endoscope and had the H-Pylori bacteria. I also have Gerd. I take something over the counter called Zegorid for that. Very old school, has baking soda in it. I also have balance problems and blurry vision. I took 2 antibiotics at the same time for 10 days for the H-Pylori. Just made me nauseous and unwell. Glad it's over. I believe it was something we ate or drank (or the pesticide our father put on our garden) that gave us that bug. It laid dormant until each of us were in our late 40s. I read something recently that some bracka gene in Parkinson's makes MS more hereditary. I hope they figure it out before my son, grandson and nephew end up with it. Reply Sandy It can be hereditary. My uncle and his daughter both have it and a specific gene is an identifiesd cause in threir case. Reply Brenda &Wendell Brown My husband has had MS for27yrs.My 52 yr old daughter was just diagnosed today..... Reply Mag Land Katherine you are right, Food is one of the most important factors in ones life, but many other variables are at play as well. My mother died of MS, My older brother and I have MS and so does a 1st cousin 20 yrs younger than us. My Brother left at 18 and has eaten well (married at 22), thus Diet is not the main factor. I have eaten well, just not consistently. I beg to differ, MS does a hereditary link. Proof is in the pudding, sorry for pun. The year is 2020, the USA now has almost ONE Million diagnosed with MS and more in denial, thus MS is becoming a huge public health crisis. We are suffering and MS Sucks. Hopefully one day we will discover everything there is to know about MS, but today we have a long journey ahead of us. Reply Elle The article you are commenting on says otherwise... Reply Denise C. Has your son had an endoscopy and tested for H-pylori and peptic ulcers? I had the same symptoms and lost 80lbs. I finally saw a gasterinterolgist and I tested positive for this bacteria. The treatment is very intensive. However after that I found out I have lesions on my spinal cord and my head, so I am not doing well. But the lesion on the spinal cord can cause hand tremors, difficulty walking and balance issues and now vision issues. Reply Dawn Knecht He probably has celiac disease . Its genetically linked to ms. Eating wheat causes the stomach pain Reply robbie Try gluten free diet. It worked for my niece who had the same symptoms and no one could diagnose what the problem stemmed from. Her mom tried it and it worked within a week. Now she is a normal adult and will always be on this diet. Reply Katherine ONeill Have you tried changing his diet to gluten free & lactaid free everything! Also exercise along with the change of diet. Most meat & foods are full of MSG, ETC. . He must drink a lot of water to flush his system & take a probiotic so his bowels work regularly. Have him checked for allergies from food & animals, etc. they can cause stomach pain. I got tired of doctors & decided to log daily everything I did, ate, drank, calories, bowel habits, medicines, blood pressure twice a day & blood sugar. I was sick with pain in my gut all the time & kept getting worse until I started this program on my own without telling the doctor . AT least 4 months later I started feeling better able to get around & the pain in my gut was gone. I still exercise daily & now I lift weights to rebuild my muscle lost. If I dare eat anything that has preservatives, soy, or additives I get a noticeable reaction & spit it out. I'm 69 years old now & feel like I'm 40 again. It seems like a lot of work logging everything but doctors are in it for the money & Meds also bring them money. Also Jesus suffered & died taking all our sickness & sin. By his stripes we are healed IN JEASUS NAME! jbelieve with all your heart! Pray that to your son & for yourself & you will be healed IN Jesus Name! I pray you both will be healed & God Bless YOU BOTH! Katherine Reply S Khosroshahi MD Has he been checked for Helicobacter Pylori? Reply Zebrakitty I know this is an old article, but if you are still having trouble finding help, please check out the Hansa Center. They have lots of videos on YouTube. There's multiple people in my family with MS and other neurological issues. I became ill 4 years ago and the Hansa Center saved my life. Reply Eileen RAdley My Granddaughter who is now 19 has had these same symptoms since birth.....she has recently been diagnosed with Mast Cell Activation Syndrome. Science is always learning new things. The Human body is a very complex organ. Good Luck Reply Daniela Try juicing purple cabbages and drinking the juice for a week and see how he feels- this stopped my bacterial infection- Reply jamie lowe I am Jamie Lowe I was diagnosed almost 30 years ago as a mother and soon to be grandmother of a girl its scary you realize that over 25% never have a positive test its a process of making sure its nothing else I was the first person fired back in the day under ADA laws thats a nightmare in its own but MS will shut down digestive system you never know when you wake up if you will be able to see hear or any number of things you cant hide your head in the sand all it will do is get worse as long as you face it head on you will find the right path in life for you Reply Charles FINN, MD Ampyra is a bunch of BS. IF YOUR GETTING HELP, GREAT, I'M HAPPY FOR YOU! As an MD it only helps the pharm company. I bet on at lease 1 appointment you have seen the hot cheerleeder type in a tight dress and low cut top sitting in your Neurologist office with a Big quantity of food. Your Doc and staff really enjoyed the bribe. I'm also sure your Doc and colleagues enjoyed an expensive restaurant and wine (another bribe). More important, let's not forget, the huge salaries the Doc's are paid to publish useless case studies (a Big bribe). The last time I checked there were no level 1 evidence research studies published on Ampyra. For the people who arn't Doc's or Scientists these are the only legitimate, blinded, honest studies when research studies are published. These companies make hundreds of millions if there product works. They lose millions if It's not effective. Save yourself lots of bucks and buy It from a Compound Pharmacy. The active Compound Is identical. The Ampyra package insert has a warning about taking both because your taking a double dose. There are no conflict of interest and nothing was given to anyone for this post. Reply Thank you for your comment. Reply James I was diagnosed with MS in 2000 I had no treatment for my symptoms (which we undetectable apart from the numb feeling in my cheek that led to the diagnosis - which disappeared). Then in 2010 I started feeling some numbness in my legs, which was the kick I needed to start doing something - I now take tysabri, which has halted any further progression, and I also take Fampyra(ampyra or fampridine), and I can definitely tell you if I don't take my fampyra tablet one time, I FEEL IT! Fampyra definitely works for me! Reply James Sorry, I forgot to say I have tried the compound pharmacy version, it does work, but it is definitely not as effective as Fampyra. Reply Carol Purcell My daughter has had MS for 11 yrs, probably longer but she was diagnosed at age 24. I found out last year that my grandmother had MS and died of complications at age 40, so I never met her or knew about her MS. Do you think that it is inherited? Reply Carol Purcell I forgot to mention that my daughter has never really gone into remission and has relaxing remitting MS and has an infusion of Tysabri once a month. About a year ago she has developed Addisons disease. Do you feel the Addidon's disease is related in some way to the MS? Reply Kelly Buck I know there is a lot of conflict in telling if MS is hereditary or not. From what I was told by my Dr's in Florida. It can be. From what I've read in these comments here. I'd have to agree. My Neurologists told me that you can only get MS 2 ways plus the other factors that contribute to your suseptibility to the disease. 1 is hereditary and 2 is environmentally like ecological poisoning. Which is a lot more common then people care to admit or are led to believe by their governments and media. But that being said, there are Other genetic factors, and other things that make that person with the possibility of heredity more susceptible to MS then other people in their same family. Which explains why only some members in that family have it and others don't. Me, I'm from category 2. The environmental/eco poisoning group. It's not hereditary in my family. No has had symptoms of it or died like it for the last 50 to 100 years in my family that I can tell. I'm the only 1. As far as the environmental factors go. With the other factors that make me more common like being female, and born living in the north USA, being Caucasian, catching the EBV causing mono from work drinking fountain along with half my department at work, and having other diseases that are hereditary in my family like IBS, colitis, my extensive research based on the Dr's DX of environmental and possible ecopoisoning has found the drinking water where I was born is contaminated by toxic waste by a few companies dumping in the rivers. This is in mid michigan. No its not related to the lead being dumped for decades in flint rivers and lied about as if it was a short thing. They at least got attention drawn to it and a lifetime movie made about it. Which BTW the lead is still an issue there and always has been in the nasty water there. My issue is other toxic waste, dumped in other rivers with Dioxins in it. By a big company called Dow Chemical. Who have been poisoning and killing people for decades. Heres the problem when you figure out possible culprits of your own murder. People around you that are affected too but in ither ways like cancers, fertility issues, etc tend to still think you're just a conspiracy nut or whatever and not take you seriously. Even when they have their own laudry list of medical problems that are on that list of things the toxic waste causes. My own mother isn't supportive and wouldn't even go with me to choose my first ms medication after I was diagnosed. Though she's been there for all my health issues my whole life. Now that I have an answer for all of it that puts the whole puzzle together, she won't hear of it. She doesn't have any answers and insists it must be in our family somewhere when no one has had anything like it or died like it for 50 plus years that I can tell. Ive done extensive research so much so that my Neurologists were so impressed with my findings and out of the box thinking that they added my research to their official database for the University of Florida and asked if I'd like to be an official volunteer research assistant. I declined the offer unless they offer me a paid job but have promised to give them any further proof I dig up and I have. I keep pushing for answers for myself and for all others with MS or searching for answers for their loved ones with it. In spite of my lack of support from my own family. Ive met others that have had a lack of family support as well. It's all about doing it for yourself and others like you suffering. I love my mom but forgiving her for not believing me or supporting me when I have all the proof in the world is something I will have to find the strength to do later. Right now I'm focused on the task at hand. I have to be. Living my life, trying to have less stress, find happiness and real love someday, and finding healthier ways to improve my condition with natural ways like foods, remedies, exercises, and western medicines all combined. I have to be focused for myself. With no REAL support to count on. Friends are unreliable and mostly liars where I live. Support groups are sketchy at best. I can say if you live in Jacksonville, FL 1 of your best remedies will be moving out of this hellish city to a better place with better people. I'm working on it. I found a sanctuary in Key West and the lower keys. I plan on moving there where I can soak up all the vitamin D I need and use (Environmentally and Coral Reef Safe Sunblock so I don't pollute the ocean with the chemicals other sunblocks use and add skin cancer to the MS. The people down in the keys are kind, loving, compassionate, and genuinely care and help eachother out. Its the clean eco environment, sunshine, and real friends I need. Just the right medicine for MS and my soul. I'm working on it. GOALS. Reply Debra Guerra I take Ampyra. I approached my neurologist when I learned of the medicine. Experienced immediate improvement. I am unable to walk without it. I'm so sorry you did not have positive experience. Reply Becky Stroebel I have been on it 8 weeks. I have NO improvement but I've been dizzy and light headed the entire time as well as super itchy. I'm going off. Reply Peggy Yeager My husband takes Aminopyridine, which is the cheaper compound version of Ampyra (costs us $48.91/mth) and has done well with it. He is full time in a wheelchair and cannot stand. However, both us and his neurologist feel that this drug has helped to stabilize the progression of his MS as he has had very little progression of it in the last 5 yrs that he has been taking the drug. He has the primary progression form of MS. Reply Joan Quilter How can you be an MD, when you can't even spell correctly? Reply Emily Joan that was my thoughts exactly. My father is a doctor and he has told me that this story of bribes is such a pervasive lie. Charles, please stop spreading misinformation around. Reply Mag Land Not bribes, but free food almost every day with education. Out of town educational seminars and dinners as well. If Education is linked to free food or whatever, then not a bribe but educational seminar or lunch. Most Big Pharma reps are hot younger/older women. I have met hundreds of reps, Most Dr's are men, thus most reps are women, Fact. Pharmacists interact with the reps as well, we did get showered with food and gifts prior to 2010 in the hospital not retail, newer ethic rules require food/education or not allowed, see the trend. Reply CHARLES FINN Look me up! Board certified Orthopaedic spine surgeon 4 23 years. Just my opinion. Are not, Aren't. "TYPO". Does it matter when your dealing wi a horrible disease? ORTHOPAEDIC, ORTHOPEDIC. Both are correct. Reply kathleen My walking got worse on Ampyra, not better at all!! My fingers always tripping over themselves on the keyboard-lol Reply Shana The "bribes" are real, as are the pharmaceutical interests that influence (dictate) medical school curricula. Three Wing Nut root / Thunder God vine root / Tryptophygum Wilfordii is an excellent example of a great scientifically proven tool being withheld from the market by Pfizer. It has helped me immensely. BTW, I find that many scientists / doctor's can't spell worth a darn. Many well-done studies contain spelling errors. "You're," not "your." ? Reply Fiona Weir Why does nobody know that bacteria is a plural word, the single of which is bacterium? Reply JJ Steiner I was in one of the first blind studies for interferon-beta back in 1992.. I was taking the shots every other day, religiously..Along with hoping the drug would help my illness from progressing, I got a seizure disorder and other side effects that I had to take 3 more drugs for.. A few years later, I had moved to another state and saw another doctor who change the drug to Avonex, which was once a week.. I took that religiously also.. A few years later my doctor told me that the MS had progressed to Secondary Progressive.. I thought, why am I harming myself by taking this drug if it is not working for me.. So I had a talk with my neurologist and told him that I was going to stop taking the drug.. In doing so, the anxiety stopped, and numerous side effects, also.. Along with my vitamins I normally took, I added vitamin D3.. It has been over 10 years since I stopped taking anything and I am much happier.. the MS is still at secondary progressive.. I am still ambulatory with the help of a cane, or a walker at times.. And if I am going to a farmers market or a fair, I take my scooter chair.. I will wait for a cure before I am "talked into" taking another drug.. You are so right about pharmaceutical companies making a lot of money on "treatments".. Its time we stand up against this.. Reply JJ Steiner also, I have one first cousin with MS and a second cousin with MS, so I know what side of the family this comes from.. Meant to say ty for posting this info.. I wont tell family about it because I don't want to cause another war.. Reply joan The research I found said either, I haven't had testing yet, My paternal aunt had it, I started getting symptoms in my early forties and was diagnosed with dystonia, needless to say after 10+ years I finding I have many of the listed MS symptoms and will be heading to a neurologist ASAP. Reply Al Who are you, Charles FINN? How unprofessional of you. I don't believe you're an md. Ampyra is a Lifesaver to me. It's the only thing keeping me upright. Reply Mag Land What the Dr is saying: you can get a less expensive version of the Big Pharma version in my opinion. Saving thousands of dollars. He started his opinion with too much emotion without explanation until you read his complete post, he is upset like the rest of us. He got my attention, thou....... Reply kathleen My walking got worse on Ampyra, not better at all!! Reply Jenni I took Ampyra once for my balance. I will never take it again, both my hands went numb, both came back as soon as I stop taking it!! Reply K. Thompson RN Dr. Finn..agreed and this applies to so many other drugs as well. My hormones and vitamins are compounded for me. Vitamin D should be sublinqual but everyone wants to swallow a pill instead...People should be educated on the most efficient way to take vitamins etc...it could be IM but my goodness lets pop lots of pills!! Reply April Steckel I have MS I am 40 I have a hard time remembering things been married for 14 years and remember telling my diabetic doctor my legs jump he said it was my diabetes I told him really there has to be something wrong found out needed triple bypass but still nothing about legs that was in 08 now it is 2016 I have memory loss my husband gets so irrated with me I feel like he is making me feel very small he is a gentlemen too he has been threw heck and back with me I no longer work I can't to weak and with my heart diabetes MS brain bleed from a job I use to work at I got hit by resident. Was not covered I gave him books to read to understand he said he read some 3 minutes I don't know I know he is stressed so am I is MS heriditary? Reply Janice Golding I'm 43 and had my DX in 2013 at 40 yrs old I have been taking Tecfidera the whole time with my diabetic med and nerve med for my legs.I knew it was hereditary because my fathers mother has it, my father and now me. Reply Janice Golding there has been a thought change lol my mothers mother was an Alcoholic and drank with all of her unborn children causing my mother to suffer from fetal Alcohol syndrome and that was passed to me and my Half sister she has Fibro and me MS talk about a genetic mutation lol Reply Laurie McLaren Can someone's child get tested for this gene mutation to see if it has been passed on? Reply Ashley I was wondering the same thing. Reply Trudy My mother, my cousin and I have MS... So I would be interested in having my son tested for the gene, and I am quite sure my cousin would wish the same for her twin girls... Reply Gina Massingill I just went to The Philippines to have HSCT for my MS. I did not qualify for the USA trial. HSCT has been shown to stop MS 90% of the time. It basically reboots your immune system with chemo. When I returned I discovered that because I was not going to take Tecfidera anymore Blue Cross Blue Shield will no longer cover Ampryra for me. I am now taking the compounded version. It does help my walking speed. I have had MS for 25 years and after only 5 months I can tell the MS has become inactive. An MRI in a few months will tell us for sure. It does not repair the old damage but my body seems to be trying to do some repair. I no longer feel I am headed to a wheelchair. Feel a bit better every month. Thank goodness for Facebook and all of the info that led me to treatment. Reply Shelia Carpenter I get Tecfidera for free from its manufacturer. My younger sister got Copaxene and now Tecfidera (she switched). My older sister takes Avonex and has had MS for 20 years. My older sister was pharmacist until 2 years ago. She made a great deal of money. Her annual income was just under 100k a year. My younger sister is still teaching K-4. Her husband her have an annual income of just under 100k a year. My husband and I together make exactly the same, just under 100k a year. None of us have a copay or anything. Free thru the manufacturer, Biogen. I'm on Medicare now. If they covered it, it would have been $2k per month. Let me know if you need the number. It's in the US. Reply Kayla I am the only one in my family, both maternal and paternal, that has MS (that I know of right now). I was also diagnosed at the age of 15 in 2008. If there is a way to test for that particular gene, then I am greatly interested and curious. I'm sure my parents would be interested in that too. Reply Elaine Kayla...what were your symptoms at age 15 which led to the diagnosis? Reply Kayla Elaine, I was barely able to see out of my right eye due to optic neuritis. There was a dark cloud that disturbed my vision. It was also very painful when I moved my eye from side to side. These symptoms were followed by some double vision in my left eye and then loss of balance. Reply Stephanie You are so lucky that the doctors took you seriously! I had all that happen at around the same age and no one ever took me seriously. I was finally dxed 09 after I had my second child and I was 26. Reply jackie senior same her i was never taken seriously for a long time.I was 32 by the time i was diagnosed with MS but i had been having symptoms from age 14.When i had my son at 19 i went numb from the waist down for 3 month,and i was told it was post natal depression !!!! I almost felt relived when i got my diagnosis. Maralyn Smith I'm 66 and only recently diagnosed but feel I've had ms most of my life. My shoes were built up from the age of 3, then I kept falling over, losing balance and breaking arms. At 13 I had a lot of leg pain and was told it was osteomyelitis but was in and out of plaster as they said it could be bent bones. Still falling & breaking arms in the meantime. Overcome with really bad depression in late 20's & early 30's then at 44 couldn't walk at all. Was told it was reflex sympathetic dystrophy. Carried on falling over and breaking bones. 4 years ago had a really bad dizzy spell and doc thought it was a mild stroke. Unable to even walk in a straight line for months. Hospital then said it was migraine then later changed their mind and said it was early onset Parkinson's disease. New neurologist is great at last but recently fell again and broke my arm. Now have arm in splint and wearing leg braces. Will not give in as not going to use a wheelchair. Just feel sad that not diagnosed sooner as medications could maybe have helped me remain more mobile for longer. Reply Hi Maralyn, I am so sorry to hear of your distressing experience. Now that you have been diagnosed, at last, I do hope that you are receiving suitable treatment. Above all, keep positive. Reply Kristi I too was misdiagnosed most ofy life. I'm 57 year's old , and wasn't diagnosed until I was 45. Doctor's told me my symptoms were all in my head,were from depression, and was treated with every pill for depression invented since age 15.My neurologist now says my symptoms started at age 11. I started telling doctor's in my early 20's there was something very wrong with me...All I got was "you're depressed". It still infuriates me how I was talked down to and treated like a nut for 25 year's !!! Reply karen Andresen My daughter was just diagnosed in late August at age 15. She had slight numbness on the side of her face. Dr at Stanford said she had a "mass" in her temperal lobe. She had surgery and many tests on this 2.5 cm mass. After a repeat MRI in August, diagnosis of RRMS was given. She turned 16 in January and has been on tysabri for 5 months and had a couple relapses which involved her eye and one side of her body. I do not know anyone with MS. She has two older siblings that are healthy. We live in sunny California and spend time in Maui and Cabo. Perplexed by it all... Reply Kayla Beltran Karen, I understand how stressful a diagnosis of MS can be. I'm 24 now (15 when diagnosed in 2008) and it has been a rollercoaster. Luckily, I've been stable. I have been on tysabri since 2014, and surprisingly I feel great. My mother still struggles with everything, and I see how hard it is on my family. Feel free to ask me any questions and I will try my best to answer based off my experiences with MS. :) Reply Helen Hi my name is Helen ,I am 57 yrs young and was dx back in 2008 after having problems with tripping over ,memory, blurred vision , spasms ,and many more , my mum passed away in 2004 from MS and was 64 , mum dx in 1976 and progression was full on , within 2yrs she was wheelchair bound unable to use her arms ,hands , doubly incontinent , so I knew all about it , I was told many years ago before dx that I had Fybromayalga , but I knew I had it , I just hope that these Dr's look into more testing to know that it is hereditary, I have a son of 40 and grandchildren and hope and pray it ends with me .ps My mum suffered a lot and her MS was extreme and I must point out that I am still able to walk with a crutch ,have spasms ,eye problems and memory loss also sleep problems and incontinence but nothing like my dear mum had . God bless to all Reply Helen, thanks for commenting. Do you see a neurologist? I would say that he or she is the one to whom you should express your concerns. I am not a doctor, just a fellow patient so my only advice is to put your worries to a doctor. Good luck. Reply Adam This was an interesting article. My father was diagnosed I would say at least when he was in his mid 30's. He's 74 now. The treatments he is on seem to be doing well for him under his neurologists care. I have been told for years that this is not hereditary. While I am not panicking, if there is testing that can test myself and my younger brother (I'm in my late 40's and he's in his late 30's), why not know so we can be as proactive as we can to the extent possible. Is there genetic testing being embraced by our US Practitioners? If so how or what is involved? Reply aston gilis Is there testing for this yet? My father was diagnosed over 40 years ago and while well, we have only heard it's not hereditary. I found your article very interesting and refreshing. IS there genetic testing that US Practitioners are embracing in the US? If my brother or I carry the gene, then at least we know and can be proactive about it to the best extent possible. Or at a minimum, we keep our children aware of as they care for themselves throughout the years. Reply Jance My mom had 2 sisters in her family> My Mom and both her sisters had/has a child with M.S. how that relates to me is one male cousin how lost his battle to M.S. about 30 years ago. one female cousin (56) and my older sister (58) currently fighting M.S. . hers I know is secondary progressive. Reply Diana Zagiel Hello, My sister was diagnosed with the very progressive form of MS at just 28 years old. She was paralyzed and in a wheelchair by the age of 30. She just died July, 2015 at the age of 51. My question is: Since she had the very progressive form, is it hereditary? I have 4 daughters and 2 granddaughters that I worry about every day. My oldest daughter is starting to have little signs like, vision problems, equilibrium issues, back & hip issues.. What test or tests should I have my girls get to see if they are at risk for the disease?? Thank you Reply sue We are similar, my mom was diagnosed at 26 yrs old and was in a wheelchair by 30 yrs old. She passed away at the age of 51 yrs. So she had the progressive form of MS. I found out last week my cousin, (my mom's sister's son) has been diagnosed with MS! Apparently it does run in families. I am 50yrs old and I am worried about my kids now. Reply Becky Smith I'm the only one in my family who has MS. But stories of grandfather who couldn't walk and had issues with having a blanket touch his legs. Could he have had MS instead arthritis? Reply Tim Bossie Hi Becky. Thank you for the comment and sharing your family experience. It is hard to say, and we would never want to assume anything, but we do know that there are many misdiagnosed cases of MS. Reply James Lee OMG! I'm numb after reading this article and all the comments. I feel so stupid, and now I feel guilty. I'm in need of an expert. At 61, I was diagnosed with MS on Monday a week ago. My father had it and symptoms of it even in college. He died in 1985, and back then, every day was a new adventure. My mother never knew from day to day what to expect. I took care of him all during my adolescence, from getting him up at 5am to doing intermittent catherization for residual urine during the day. He was forced to retire from "Ma Bell" in 1969 simply because they wouldn't build a ramp. His sister, my aunt had it. None of us could believe that both could have it, but they did. Now MY sister has it! She's doing as well as can be expected, and I believe they caught hers early enough to prevent further damage. Now I have it. I am certain I have had it for decades and didn't know it. The fatigue, the inability to walk a straight line, the falling, the vision problems, the memory loss and inability to get words to come out...it's all been there. Now my daughter thinks she may have it. I listened to all of her symptoms and I'm so torn up about it. I went to medical school a couple of years before deciding I didn't want to be a doctor, so a little knowledge is dangerous. I read constantly. I've ALWAYS read MS is not hereditary, without believing it. I am so concerned about my two children (my son as well, because he has exhibited symptoms) that I don't know what to do. With this type of history, is there any way I can be tested for the gene, and especially my children and my two grandchildren??? I look back on all the things that happened over the course of my 34 year marriage and its decline. OMG. So much of what took place was due to the symptoms of MS. I didn't have a clue. It never occurred to me that I could be suffering like my dad. Any advice and all advice would be so appreciated by this father. If you made it this far, thanks for reading. Reply Charles Breuninger Our lives are parallel in many ways. I thank God that my sisters are healthy, and so far my children, but with our fathers, and ourselves. I have been in an electric wheelchair for years now, but was never definitively diagnosed until last year, because even though I had EVERY symptom I watched my dad suffer with (except the ones my neurologist treated me for, knowing all along) before there were any drugs and therapies. He was diagnosed in '79 and died in '87. I had an almost 29 year marriage go away because my wife watched my mom and my siblings and I take care of my dad and confided in my mother when my symptoms started in earnest that she "couldn't do what she did" and when I got the wheelchair, she got a boyfriend...when I found out we stayed together until I got my SSD and both of us could at least have shelter and food (maybe meds) we split up. I thought I was alone. Carles and his team seem to have done some amazing work. Unfortunately, they aren't adding new test subjects right now (I offered) and if they were, they can only use Canadians. I wonder if Trudeau would have me? (just kidding) Reply Alice Thanks for sharing. I was diagnosed with MS in January,2002. My life was turned up Side down. The first thing I remember is I started falling. I am during great. Reply Linda Young I'm 75 yrs old and have suspected that I have MS for a long time. I have all 10 of the listed symptoms but I don't know what type of a Dr. I should see. My maternal Aunt also had MS. Reply Shawna Please find a neurologist that specializes in MS and a functional medicine Dr. Best wishes for you. Reply Lisa Clark I’m currently experiencing facial numbness, feet, and leg numbness along with occasional speech slurs which most of the time I don’t notice but others do. As a phone tech my customers have to repeat number sequence due to me having issues of not being able to put in proper order and they are constantly saying could you repeat that I couldn’t understand you. The pain and numbness is intermittent and headaches are severe and frequent. I’ve had CT w/ contrast showed normal, X-rays showed narrowing below C5 & C6 with lesser above. Possibly the cause of problem. Lumbar X-ray normal. Emg showed bilateral mild category chronic L5 And to a lesser degree S1 lumbosacral Radioculopathy. This information as all been posted on my chart site and not from my doctor. I’ve communicated letting her know my issues at work with employer and coworkers noticing my problems and she has suggested taking time off and now wants to refer me to behavioral health but not once notifying me of any results. I did notice in thread something about vitamin D deficiency I at one time was tested and was deficient. My issues are on going and husband will not let me go to another doctor as we’ve spent thousands with current one. I have been tested in past years for MS doctors have suspected but never found anything. I know I don’t feel normal I’m so tired I vibrate on the inside, I can’t believe it’s just a pinched nerve. Nobody will listen of course I guess that’s why I’m going to behavioral health I suppose. Oh I forgot to mention the itching it’s crazy but I itch for no reason. I think I’m ready for the white jacket..... Reply Annemarie I have primary progressive MS and was diagnosed a mth ago with relapsing remitting,only 5 % have been diagnosed with 2 kinds of Ms, i keep having relapses; my last one is where I lost vision and had to be put on the steriods ( pill form), so I apparently had optic neuritis! Reply PS My husband and 2 of his first cousins have MS, all on his mother's side of the family We definitely believe this disease is hereditary. Reply MELODY CARPENTER I ALSO BELIEVE THAT IT IS HEREDITARY AS MY MOM HAD A HALF SISTER WHOSE DAUGHTER HAD IT THEREFORE THIS COMES FROM THE MOMS SIDE AS MY AUNT AND MY MOM HAD SAME MOM DIFFERENT DAD SO THAT KINDA TELLS IT AS I HAVE IT ALSO! BEST ADVICE IS TO EAT AND SLEEP PROPERLY AND KEEP MOVING AS MUCH AS YOUR BODY WILL ALLOW !STAGNANCY CAUSES THINGS TO BECOME ALOT WORSE! Reply Carol Thank You all this information and your comments have been so very helpful. I was diagnosed with slow progressive MS in the early 80’s but my dad and I remember my having problems all my life. While the rest of the family called me a faker my dad supported my husband and me and helped us through the tough times. Recently I learned that the stomach and intestinal issues I suffered with for most of my life were do to food allergies. I am in a wheelchair full time now and I am doing very well for myself. Again all your comments and information has been very helpful. Thank You. Reply Carol From my understanding and what helps me so much is that the more severe forms of MS are genetic, but not all forms are. MS is not in my family’s genes. Yet I was diagnosed as having MS through a spinal tap done in the early 80’s and everything I experience does fit with MS. Personally I do not take drugs or medications to treat the symptoms. I use diet and vitamins and exercises. It’s not so much what I eat but what I avoid eating that makes the difference in how I feel. That’s because I had blood tests done to check for food allergies and I avoid allergens unique to me. Avoiding all grasses wheats grains sugar cane corn may do nothing for any of you but it makes me feel better to avoid it because I am allergic to it. Reply Susan E Miller I was diagnosed with MS in 2007. The neurologist I have now said I probably had it a long time. I am now 55. My daughter is 15 and we are in the middle of her being diagnosed with MS this is June 2018. For me we don’t have anyone as far as we know in my family that was diagnosed with MS. It is frustrating for me to see my daughter being diagnosed.I only have around 5 leisons but have drop foot which makes it harder to walk and I where a brace to help. I use a cane, walker at times and a power chair when alot of walking is needed. As for my daughter she has multiple leisons. Her symptoms began with extreme anxiety which caused her not to be able to go to school the last 3 months. She does have leisons on her optic nerve but it has not affected her vision yet except for flashing lights for awhile but has stopped. Her vitamin D level is really low so in middle of treating it with a prescription Vit D to get it up. Still waiting to see what they will put her on. Before she was diagnosed her pediatrician put her on lexapro that ened up warping her out so took her off it. They give her clonasapam to take for her anxiety. Any one else with a youth that has aniexty and what helps them. They want to try other drugs to help her but I sure don’t want to see her warp out again if it does not work. Oh she also has been having charlehorses. It is so stressful for me to see my daughter go thru this. Makes me feel like I gave it to her. What seems to be a good treatment for a youth. Her neurologist said there is a pill out that seems to really work as my daughter hate needles and has past out from blood draws. I am on Tysabri which I like and don’t have to remember to take my med. every other day. So to me I believe can be hereditary but can’t figure where it came from for me. Reply Charles Breuninger I am very interested in this study and in being involved in any further studies that the professor and his team do following this seemingly promising lead. I'm a "White Elephant" I'm the son of a father who died (horribly and quickly) from what back then was called "Male Progressive Degenerative M.S.". My dad was diagnosed in 1979 and died in 1987. He was involved in trials and studies, but never had a remission and only had one "plateau" for about 8 months where the disease didn't seem to get worse, but when it did, it progressed to where it would have been had it continued without the plateau. That, as we know is now simply called PPMS. I have PPMS. My symptoms started years ago and I was told by doctors that I couldn't have it, because it's not hereditary, and many other reasons too numerous to get into here. I did, however also have Type II Diabetes that has a lot of symptoms that are the same or similar and can mask M.S. symptoms, but my Neurologist was NEVER deterred. He kept poking and prodding and my DX with him for 9 years was "Unknown Neurological Disease/ Possible M.S." on my charts and discharge paperwork. When I had a second heart attack and then had a quadruple open-heart bypass then lost a lot of weight and got my diabetes under control, but the neurological symptoms continued to progress, I made the doctor test me for everything under the sun before he finally did all the testing for M.S. with one exception. He could NOT do any MRI's due to a big hunk of metal wire that will always be in my chest that they used to tie my sternum back together. In 2017 the finally did all of the other testing and told me it WAS M.S., and it took almost 10 months between my insurance company, his office staff, the imaging company, and the Holidays to get me in for the Lumbar puncture that showed it was PPMS. However, when my Neurologist prescribed Ocrevus for me (which I haven't started yet) he ordered a blood test that included Vitamin D level. My Vitamin D was ALARMINGLY LOW! There is no way that this is coincidence! So, in his estimation, and looking at all of my medical records and his observations my Neurologist (who started giving me M.S. symptom drugs 8 years ago, like Baclofen, etc) puts my actual time of diagnosis as 12 years ago! I just wish someone had found a linkage like this before with genetics, instead of all of the doctors and other health "professionals" denying over and over and over again that it was at all possible. I would have had the tests when I felt my first numbness band in my belly and on my feet, and God only knows how much better off I could be now. I would LOVE to get with these researchers and be a subject and help them in any way possible going forward Thank you SO MUCH IAN for this article! Reply Shelia Carpenter Me too, Charles. My mother had 3 children and all 3 have M.S. We all got sick (had our first significant episode) when we were in our late 40's. Both of my sisters were diagnosed with their first MRI. I am more like my fellow-MS"ers" and it took 2-3 years and 4-5 neurologists. The idiots I saw kept trying to tell me it was all in my head, headaches,etc... Thank God the neurologist I see now was not scared to say that he indeed "thought I did have MS". He said he could put me on a DMD when my lesions did show up. He said he's had patients where it took a decade for their lesions to show up. I'm in Virginia. Reply Pat Carter Our granddaughter recently diagnosed with MS doing blood test and spinal tap plus MRI's. Her brother was diagnosed around 8 years ago. They share the same father and different mother. Interested in other siblings diagnosed Reply Gayla Perry I was diagnosed with ms when I was 29, I am 61 now. My daughters ages 35 and 39 have all the same symptoms and their MRI’S show lesions and of course mine since mri has existed. We live in Michigan and work together at a medical clinic. I have been to Cleveland Clinic, University of Chicago, University of Michigan. I really want all three of us to go to the same Clinic and I of course want the best group of Physicians for my girls. Does anyone have any suggestions? Reply Deanna Margulies Has Anybody with relapsing and remitting MS had oxygen therapy? I go now every two weeks, before I went every week, I feel ok but do not know whether it is stopping any further episodes,here in the UK the NHS do not pay for this treatment so as it is a charity it costs £15 each session.I am 73 years old and would like to hear from other sufferers that maybe take this treatment. Reply BA NR1H3 p.Arg415Gln Is Not Associated to Multiple Sclerosis Risk The International Multiple Sclerosis Genetics Consortium1,* *Altshuler D, Daly MJ, Lander ES. Genetic mapping in human disease. Science. 2008;322:881–888. [PMC free article] [PubMed]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5641967/ Reply Katelyn My dad and my aunt on my dads side have ms, dad was diagnoised in his 20's and my aunt was diagnoised in her 50's. I am 29years old and wondering if I will get it. I have this weird cloud feeling in my head and I get super tired. I got checked about a year ago and said i have the same symptoms as my dad but when i had an mri they couldnt find anything. My eyes hurt all the time, and they believe I have migraines. What's the percentage I could have ms?? Are these symptoms of ms?? Thank you. Reply MLP My husband's sister has relapsing-remitting MS. She was diagnosed around age 40 and is now 61 and getting progressively worse. Their 2 aunts (their mother's sisters) both had MS and both passed away at age 62. My husband has psoriasis, also an auto-immune disorder. I find it hard to believe that there is no genetic pre-disposition for contracting MS. We have a very large family (14 grandchildren from that side of the family, many who have children) and I am thinking there should be some genetic testing done for the new generation of parents. It is really very concerning. Reply Colleen I have believed for years that Ms is hereditary. I am 46 and was officially dxd in 1989. But had symptoms dating back to “87”. I was always told that the disease was familiar what ever the heck that meant. They never had any concrete evidence to label this as hereditary. Years after I was dxd My moms sister was dxd she was in her 50’s then my aunt my dads sister was dxd I guess she was in her 50’s she has since passed from lung cancer. I believe her onset diagnosis was PPMS. Also my moms sister who’s onset diagnosis was also PPMS. I was dxd in my teens with RRMS. I have been fighting this fight the longest and seem to be doing the best. It has gotten worse for me over the years with permanent damage of numbness and tingling in my legs and feet,Some bladder/bowel issues. I started out taking beteseron injections for years in the beginning as there was no Pill forms yet. Then I eventually switched to tecfidera been on that for a several years. Dealing with side effects from that. Hot/cold etc.. I have 3 children so this defiantly concerns me now, I was dxd before I had kids however I didn’t really think about the repercussions of my actions In My 20’s when I had my 3 kids. 2 boys and 1 girl . All I thought about then was having a girl that’s why 3 kids. Wish they knew it was hereditary back then maybe I would of thought differently. Now my 3 kids are all teens and I constantly worry on a different level. Reply Russell Cobleigh my mom had MS, I am 63, is it possible that I have it ? Reply pamela Carter I I am 64 years of age and was diagnosed with MS 27 years ago. My daughter also has MS, and diagnosed 14 years ago, both of us have the remissive kind. My aunt who just passed away 3 years ago also had MS, and her sisters had MS and their 4 daughters have it also. Yes it is hereditary Reply Tammy E Godfirnon Ask about giardia it's a stomach infection virus or bacteria of some kind I cant remember exactly buts common in Europe Germany area my ex brought it back and me and my daughter had what we thought was gastroenteritis for a long time and it was awful it could be something similar maybe Reply I car Get tested for Lyme it is the great mimicked Lyme also attacks myelin sheath. Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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