My biggest worry post-diagnosis was whether MS could be inherited

After receiving the news, my thoughts immediately turned to my children

Leigh Anne Nelson avatar

by Leigh Anne Nelson |

Share this article:

Share article via email
the logo for Leigh Anne Nelson's

When I was initially evaluated for multiple sclerosis (MS), I was asked if I had a family history of the disease. To my knowledge, I did not. Once I received my diagnosis, one of the first things that crossed my mind, after recovering from the initial shock of the news, was, “Will my children also have MS?” I think this might be a common experience for parents with the condition.

I’m not an anxious person or a worrier. I usually function under the philosophy that the outcome will be the same whether you worry about it or not, so why waste time and energy worrying about something you have no control over?

But when it comes to my children, I will admit that this question of whether they’ll also have MS caused me anxiety and quickly rose to the top of my worry list.

Recommended Reading

Need to Know: Do Children Get Multiple Sclerosis?

Is MS inherited?

I always say the gene pool was not kind to me. In addition to MS, I have been living with psoriatic arthritis since I was a teenager. Unfortunately, I believe my son inherited psoriasis from me. So when I was asked if I had a family history of MS, I assumed it was a highly inheritable disease and that my children were destined to develop it — thus the worry and anxiety.

Well, thank goodness, my assumption was incorrect! I did some online research about genetics and MS, and also spoke with my healthcare provider, which has calmed my anxiety. MS is not a heritable disease, meaning it’s not passed from parents to children in the same way as eye color.

While a person’s genetic makeup can affect MS risk, there isn’t just one gene associated with multiple sclerosis. I was surprised to learn that there are at least 200 genes thought to potentially contribute to MS development. With so many genes possibly involved, it seems less likely that my children would have all the variants that could contribute to the disease. I guess this is a case where MS being complex and complicated is a positive thing.

Additionally, genetics aren’t the sole determinant of whether my children will develop the disease. Environmental and lifestyle factors can also play a role, as MS News Today notes.

Living in certain geographic regions can affect your risk of developing MS. One reason for this could be the differences in sun exposure, which can affect vitamin D levels. Researchers have found that vitamin D deficiency can be a risk factor for MS.

A history of certain bacterial or viral illnesses can increase the risk of developing the disease, as well as lifestyle factors such as smoking and obesity. My children’s exposure to these environmental and lifestyle factors has been very different from mine, and I hope those differences will decrease their chances of contracting the disease.

Because I have MS, it’s estimated that my children have about a 1.5%, or 1 in 67, chance of developing it, whereas the risk in the general population is about 0.3%, or 1 in 333. About 1 in 5 patients have a family history of the condition.

I wish my children’s risk were closer to that of the general population, but it’s significantly lower than what I’d initially thought, which is comforting. I haven’t removed this concern from my worry list, but it ranks much lower than it did previously.

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 column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Feisal Brahim avatar

Feisal Brahim

I am an 82 yr old retired medical school professor whose wife was diagnosed with MS in 1988 and who passed away from a stroke at 77. My wife and I were born in the Caribbean and met in Montreal while we were in our 20s, having lived in the Caribbean for the first 20 years of our lives. While scientific advancement has created new knowledge about MS, it does not rule out the the genetic component of MS. As a matter of fact, a former colleague of mine had 2 aunts who were diagnosed with MS, and one of my daughters has MS and is currently undergoing treatment. In 1988 when my wife was first diagnosed with MS (although she had many attacks before diagnosis) there were no medical treatments, the first of which came out in 1993 -- Betaseron, Since then, and fortunately, there appears to be a plethora of drugs on the market that appear to assist in the management of MS, and has allowed my daughter to work and live a relatively normal life. My wife, who tried the ABC and more of the medications for MS, unfortunately went into a wheelchair at 52, and very slowly deteriorated, losing all motor control and bodily functions, The Importance of Vit D and sunlight may be valid, but MS may very well be the result of many factors, affecting different people in a variety of ways. Also MS symptoms can resemble a number of neurological conditions, and its diagnosis can be difficult. Moreover, everyone with MS can present with variable symptoms and thus pose difficulties for neurologists to catch it early. The continuous knowledge of how genes are regulated will probably lead to how MS and other diseases can be, not only cured, but prevented.

Letitia Wallace avatar

Letitia Wallace

I am 63 and I have MS. I got it at the age of 39.I believe that it is connected with the military. I have always been in the sun and I drink plenty of milk and V-D.

Amit gandhi avatar

Amit gandhi

Live life king size

Heather J Smith avatar

Heather J Smith

My mom had it, and so do I. My brother is also showing signs but is honestly scared to be tested.

Matthew coil avatar

Matthew coil

I am a 71 year white male with MS. I have received 125 monthly treatments of Tysabri after previously trying Copaxone and Avonex. I have five sisters, four of whom have had MS for decades. Two of my sisters have died from their MS, one died in April 2002 at the age of 48 and one died in 2006 at the age of 51. I am one of eight children born between 1948 and 1957. Together the eight of us have 35 children. 13 of the 35 children are being treated for MS. There is a direct genetic component in the progression of this disease in my family. We are scattered between California, Texas, Tennessee, Georgia, Utah, Idaho, Washington and Montana.
My parents lived to age 98 and 91 and never had symptoms of MS. My parents and six of my siblings gave blood and tissue samples in 1998 and we all had MRI's that were intended to identify MS lesions. My parents showed no markers for MS. We are all a part of a national study and database for MS study and evaluation.
I share this information to suggest that there is definitely a genetic component in the spread of this horrible disease called Multiple Sclerosis.

Rosanne Costain avatar

Rosanne Costain

The MS clinic I used to go to told me back in the 1990's it was probably inherited. I said I don't think so having check family records od disease descriptions (paternal side going back to the year 1250) Maternal side going back to the late 1700's) I think I was possibly born with it because as I think back the last 60 or so years I was always a little slower than my school chums and more than likely having to sit out paying a little more often and a little longer to regain strength and headaches that wouldn't go away. I was getting worse, my speech getting mor slurred, my gait a lot more difficult until I had an angioplasty. Opening up my artery in the right side of my neck stopped the slurred speech, my brain fog disappeared and my gait improved dramatically and headaches are rare.. I m now 70 years old and except for arthritis and a little fatigue I do pretty well most days.....I know angioplasty is not a cure, but, it sure helped me a lot.

Joel Shearon avatar

Joel Shearon

My sister had it. My other sister has something similar. I have PPMS. Our dad had Rheumatoid Arthritis.
I have a second cousin that has RRMS.
Neither of my children have it nor does my nephew. So, that’s my experience.
There is hope. There is always hope.
I am not a Dr. or a researcher. Maybe there were environmental factors where In grew up such as limited sun exposure(Vit D). Who knows.
Jesus is our hope.

Heather avatar


I also was very concerned about my children having MS in their lives. They are now 38 and 40 years old. I have no history of people in my family having MS. I am suspicious of environmental factors as quite a few people in my neighborhood growing up now have the disease. I am 68 years old. I had many exposures to chemicals during my childhood. Well water, insecticides, garden/yard treatments,… Many are now banned. I also owned a silk screen business which involved the regular use of ink and mineral spirits,
My MS neurologist told me my children should take a high vitamin D-3 supplement as a preventative measure. Especially if their levels are low with a blood test. Young people diagnosed with MS today are very fortunate to have many treatments proving to be helpful.

Lauren Williams avatar

Lauren Williams

My maternal grandmother, her daughter (my mother), her son (my maternal uncle), my uncles youngest daughter (my 1st cousin) and myself all diagnosed with MS. Sorry, there’s nothing anyone can say to me that will make me believe it is not inherited. My sister and I were part of a study about this in the late 1980’s at UBC under Dr Hashimoto.

Robert Bartholomew avatar

Robert Bartholomew

I've found the post and comment interesting and informative. Thank you.

Ivan Wine avatar

Ivan Wine

I have it, my father had it, my grandfather. All experienced our first major symptoms at 37 years of age.

Bob avatar


I have it, a sister had it, an aunt died from it, several cousins have it, I strongly believe inheritance is involved.

JK Collins avatar

JK Collins

My only sibling (brother) also has MS yet as far as we have been able to research, there is no MS in our family tree. Both our mother and father’s side of the family have been genealogically researched and we can’t find anything that even remotely resembles MS. Kinda crazy, huh? Our paternal grandmother did have an autoimmune disease, rheumatoid arthritis, so one neurologist suggested that might be the familial connection. My brother has 2 daughters and I have one son so I guess we wait and see if our spouses genes cancel out any MS genes.

Lesa W avatar

Lesa W

Interesting, because my father had it, very progressive form and he died at the age of 41, he was diagnosed around 24/25 yrs of age. I was diagnosed at 54 & probably had symptoms for many years before I was diagnosed. 6 months later my sister, 53, had an attack & through testing she was diagnosed. We were all born in NY. So yes, it concerns me about my children! Possibly the only positive is they were born in CO, & grew up with lots of sunshine.

Lucky Wije avatar

Lucky Wije

Thank you for sharing your family histories. Those of us who have gone through the MS experience can only do our best to face adversity with courage.

Ellen Lerner avatar

Ellen Lerner

Never occurred to me t that MZ would be a diagnosis in my family until my daughter was diagnosed jest before her 20th birthday. No other relatives in my family had MS that I know of. Three years after her diagnosis, I woke up one morning with numbness from transverse myelitis ( same major symptom my daughter has) and my MRI showed 2 lesions on my spinal cord. A subsequent brain MRI showed a lot of inactive brain lesions. Both my daughter and I were on a DMT for 12 years. We both have non progressive MS and we both have come off our MS medications. I have been off mine 5yrs {Copaxone) and hers (Avonex) 8 yrs. My husband and I have 5 children. Now in 30s and 40s and so far only 2of us has MS. I learned that even though MS is not directly inherited like diabetes,for instance, other autoimmune comditions may show up in a family, and I have a son with Crohn’s disease. One thing we all have in commen is as babies we all grew up in Rochester NY ( a city with a known higher MS population) as babies even though my own family moved from there when I was in 2nd grade) and I moved back there after I was married in my 20s.I am an only child. That is my story and it is true that MS affects everyone differently. I have read and learned a lot about MS that I didn’t know since my daughter and I were diagnosed. Research is still on going.

Fred McKay avatar

Fred McKay

Genetics definitely plays a role in MS. My sister had MS. My late BIL was a geneticist. He said that he thought that MS was a genetic susceptibility with an environmental activation. Genetics loads the gun and environment pulls the trigger. My sister had MS and 7 people that grew up within 2 blocks of where I grew up have/had it. I saw a chart that had the probabilities of having MS for different relationships. I only remember that you have a probability of 3% of having MS if you have a sibling with it. The general population only has a .5% chance;

John Barone avatar

John Barone

I was diagnosed with Primary Progressive MS late in life, age 65, an unusual case especially for a male. I have 19 first cousins. One of my cousin, a female. My neurologist does not regard that a as a family trait. However, our son just was diagnosed with MS two years ago3 at the age of 43 with no priior indication and an athletic background. I would be interested in exploring this possible connection for the sake of our grandchildren

J. Smith avatar

J. Smith

The wife (Colorado native) of a high school chum was dx w/MS in her late 20s. She died of uterine cancer in her early 70s. They raised their kids in ultra-sunny Calif and one was dx w/MS in her mid-20s. A very dear friend raised in the sunny high desert of Idaho came from a family riddled with rheumatoid arthritis, and he was dx w/PPMS at age 56. He told me he thought he had MS his whole life, being often fatigued, slow-moving and a bit clumsy. He was killed at age 73 in a wreck which was determined to have been caused by breakage of a steering component. I think if his coordination hadn't been a bit compromised, he could have fought the vehicle (had hand controls) away from the cliff. His son is 50, and I am concerned for his future.

Tom A avatar

Tom A

I’ve had MS for 35 years and have done a lot of reading. As a licensed psychologist, I am fascinated by peoples' initial reactions to the symptoms, then perhaps diagnosis (if they seek it out and get one) and then their chosen course of action. Two major factors that gather people’s attention and subsequently affect their response to MS, in the beginning, as I observe, are uncertainty and cause. Yes, my cousin was also diagnosed with MS (no one else in the family was), and our lifestyle factors were NOT the same. Alcohol and smoking did not give me MS; at least it doesn’t appear that way as she was pristine in her lifestyle, unlike me. So what’s my point?

One of the things I’ve counseled others on in a professional capacity is bad luck. I put genetics into that equation today. Part of handling life is handling bad luck. You need to recognize it and respond to it, because it can get you. All the superstition in the world is not going to protect you. Nor are false claims of cause and treatment. As Fred above states, “Genetics loads the gun and environment pulls the trigger”. Unfortunately, how people deal with the 2nd half of that equation creates difficulty. What are those environmental factors and once you have arrived at the conclusion for yours, what can you do about them? For starters, in my opinion, is to disregard them for now and seek proven treatment. “Time is brain” is a very helpful idea, and one can worry about the other stuff later. Yes, we got dealt the GENETIC BOOBY PRIZE and THAT is why we have MS. We did nothing wrong. So get on with it and do something about it. Follow the science. :-)

Sarah Technik avatar

Sarah Technik

Thanks to all of you for sharing your stories. Reading all of your stories was moving and inspiring. I was diagnosed with MS at 22. My grandmother also had MS as did her father, though there wasn’t enough info to diagnose him back then. Sadly, I do believe genetics has to do with MS. In my mind most chronic illnesses stem from Genetics and environmental factors. There are many people who don’t have MS in their family history.
Since my diagnosis is 2002 I have lived many great years of life. Thanks to Betaseron, Tysabri and now Ocrevus my MS has been in remission. I had two children at 27 and 30. At this point they are as healthy as can be. We all have to live life and hope for the best, even on the bad days.
I wish you all health and happiness in this life.
Again, thank you for sharing.

Charissa Rigano avatar

Charissa Rigano

Thanks so much for this impoprtant post. My father had MS and I was Dx in 1995. I am very interested in how this autoimmune conditiuon is handed down in families.
Are you aware of any groups that tract this data or people who have writted papers?
Best -- Charissa

Susan Payrovi avatar

Susan Payrovi

Thank you for this article. As a mom with now three children I did have the same thoughts, but was also comforted to know that by controlling their environment and minimizing their exposures, this would reduce their chances. I choose to focus on what I can control.great article!


Leave a comment

Fill in the required fields to post. Your email address will not be published.