MS Clusters – How many of your friends and/or family also have MS?

There has been a great deal of research examining the role of genetics in the development of multiple sclerosis over the years. The current understanding is that MS is not directly inherited, however, genetics appear to play a role in increasing a person’s risk for developing MS.1 Experts currently believe that those who develop MS have inherited something in their immune system that makes them more reactive to whatever is causing the immune system to attack myelin. It is possible that something in our environment, potentially viral or bacterial, triggers the autoimmune response that leads to MS in a person who has an inherited susceptibility in their immune system. Because so many questions remain, we decided to ask our Facebook community if they are a part of an MS “cluster,” where multiple friends and/or family members have MS. Over 170 people responded, and here’s what many of them had to say!

Several people in my family have MS

  • My sister had MS. I have it now. She had PPMS and I have PPMS. There were 7 MS cases within 2 blocks of where I grew up. I have heard that genetics loads the gun and the environment pulls the trigger.
  • My dad and his brother and sister all have MS; that’s 3 out of 5 siblings.
  • My sister and I were both diagnosed with MS this year, one month apart. Interestingly my sister is adopted, so we are not genetically related. We both want answers. It’s so tempting to blame something environmental. No one else in family has ever had it, and my twin brother is fine.
  • I have two kids and two cousins with MS!!
  • Two of my maternal grandmother’s cousins, my mother, her sister, my father and now myself. We all live in Victoria, Australia, which is quite cold and has higher rates of MS and Vitamin D deficiency than almost all the rest of the country. ‪None of the neurologists we see had ever come across such a “cluster” before
.
  • ‪I’m the 6th cousin on my father’s side of the family to be diagnosed with MS.
  • My dad, his sister, my sister, my half sister and I all have MS. That’s 3 of 5 kids (2 boys, 3 girls) with the same father that have MS.
  • My aunt has it and my great grandmother died from it. I believe my lifestyle in my 20’s was the ultimate trigger. But eating a mostly vegetarian diet and drinking tons of green tea has helped me in more ways than I could have hoped for.
  • I’m the third generation in my family to have MS.
  • I have MS, was diagnosed in ’87, but in retrospect I’m pretty sure I’ve had it since my early 20’s. In 2005 my daughter was diagnosed at 25. My family was puzzled that it isn’t supposed to be hereditary! Then in 2007 my husband and her father were diagnosed. He and I both grew up in the same town; maybe its genetic and maybe environmental?
  • I have 2 cousins on my mom’s side that also have MS. I’m the 3rd to be diagnosed.
  • I am the 4th in 3 generations that we know of.
  • I’m 55 and I’ve had it since age 30. We think my grandmother on my dad’s side had it, but she passed away in 1983. Now one of my daughters has it and one of my nieces has it; that’s it for now.
  • My daughter was diagnosed at age 16 years old, and 5 years later I was diagnosed as well.
  • My mother’s cousin, first born, had it. Her brother’s first born had it, and I, her first born have it; my brother’s first born has it. All were/are males except for me. Is there a first-born child link?
  • My sister and I both have MS, and we are the third generation to have this in our family.
  • My friend has 69 first cousins, and 19 of them have MS.
  • I have MS, my mother has MS, and her mother had MS and died from complications when she was 46 years old.

There are a lot of people who live near me who have MS

    • There isn’t a “cluster” in my family, but there is in my neighborhood. The house on left, house on right, house across street, and me – each has someone with MS. That is my whole block.
    • My sister had MS, but no one else in the family going back 10 generations had it. HOWEVER, a woman on the next farm had MS and now a young woman on the closest farm to ours has been diagnosed with MS; that’s in a community of 40 people.
    • I’m the only one in my family. Three of us from a very small country town who went through primary school together have it.
    • My co-worker had MS, then I had it, then another co-worker got diagnosed…all while active duty Air Force serving in same building. It’s a very interesting connection.
    • There’s a cluster here in northern California.
    • I grew up in the town of Tonawanda in Western NY. It’s located in between Buffalo and Niagara Falls. Many people I went to school with have MS.
    • I don’t have a family cluster, but 3 of us, all female, same age, lived on same block within 4 houses of each other, have MS. There could be more that we just were not in touch with after moving away. We were all diagnosed in 2005.

I’m the only one in my family who has MS

      • No one in my family on either side has MS.
      • I have it, but I’m the only one in my family. I was told that MS wasn’t hereditary.
      • I am the only one with MS. Diagnosed at 33 and I am 40 now. Praying no one else in my family ends up with it.
      • I am the first in my family. We went way back and couldn’t find anyone.
      • My dad was the first and only in our entire family.
      • I am the only one in our huge family.
      • I was told that MS is not hereditary?
      • I was told that MS runs in the family, but usually skips a generation; I am the first on both side of the family to ever be diagnosed with MS. I was diagnosed in 2007 when I lived in CO – which has the most people to be diagnosed with MS.

There are multiple autoimmune or neurologic diseases in my family

    • My mother has Crohn’s Disease. My youngest son has Type 1 Diabetes, my eldest has allergies, and I have MS.
    • I’m the only one with MS, but I also have neurofibromatosis (NF). I have over a dozen family members with some type of neurological problem. I have a nephew who has NF and Parkinson’s, and several family members who have epilepsy. I am 58 and was diagnosed with MS about 14 years ago. I’ve had NF all my life. I passed it on to my son and daughter.
    • I am the only one in my family to have MS, but my sister has Lupus.
    • My father’s three cousins (MS), his sister (ALS), he (peripheral neuropathy), my husband (MS), our daughter (MS – diagnosed at 10!)!!
    • As far as we know, my middle child, my daughter, is the only one to have it. My mother’s family all came from Sweden, which is a hotbed for MS. I don’t fully understand a lack of Vitamin D being a factor. We live in PA where we do get a lot of sunshine.
    • Four out of 6 of my siblings have MS, and my mother died from ALS.
    • My grandma had MS, my aunt has Lupus, and I have Neuromyelitis Optica.
    • I was diagnosed a year after a maternal cousin was diagnosed with MS. My cousin’s mom had severe RA, and my mom’s fraternal twin has Lupus.

Reference:

1. Aronson KJ. The epidemiology of multiple sclerosis–who gets MS and why? In: Kalb R, ed. Multiple Sclerosis: The Questions You Have – The Answers You Need. 5th ed. New York, NY: Demos Health; 2012:21-27.

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Comments

  • Cristina Scala says:

    I have ms. Only one in family. Town I grew up in southwest Washington has at least ten. The Columbia river ebbs back and forth carrying pollution from the city’s. Pollution environment is a huge factor

    • Bernard McConnell says:

      My mother and Father in the 1960s both were diagnosed with MS,treated by Professor Ian McDonald in Queens Sq London, both confined to Wheel Chairs. Sadly now passed. 20 yr old brother diagnosed in the 70,40 yr old sister also diagnosed,50 yr old brother diagnosed in 1980 now me at 73 yrs years diagnosed in 2023. I’m starting Rebiff next week any advice or tips
      Please. So mother,father,4 siblings all from same Irish Family with MS. Any research teams out there want to contact me. I’m in Galway ireland
      Thank you

  • Larraine Pierce says:

    I have ms. My great uncle and his daughter had severe MS. Is if possible that it is hereditary but it is only diagnosed in those with a severe form? I ask because I have a very mild version. I had tingling in the right side of my mouth for a couple of weeks. When I went to the doctor, I got and mri and was diagnosed. Most people that I know would have ignored the tingling and the other mild symptoms that I have.

    • MSAA says:

      Hi Larraine,
      Thank you for reaching out and sharing your story. Please feel free to contact us on our toll-free Helpline at (800) 532-7667, ext. 154 or via email at MSquestions@mymsaa.org for more information.
      Best wishes,
      Emily from MSAA

  • John Nelson says:

    My grandmother was the ‘blueprint’ for my sister’s MS, both physically and mentally (several notable parallels).. I lived with both over many years. My mother and great grandmother (as far as I heard) showed no symptoms. More evidence of the generation skipping. Also, both Grandma and Sister lived in the north (midwest USA), as do I – quite harsh summers and winters for the whole family. I feel confident that there is a genetic AND environmental link. The only difference is that my Grandma ‘came down’ with MS after a very bad flu (hearsay) and my sister after a car accident (but not life threatening). I hope this info helps anyone – btw, are there other documented cases in Rockford, IL? I had a male friend here in town, with NO relation, who had a severe case (unusual in men) that appeared after an auto accidnet…and died that I believe was due to his MS.

    • Angel Blair says:

      Thank you for reaching out, John. I’m sorry for your family’s MS diagnoses and for the loss of your friend. You ask a good question about other cases in the Rockford, IL area, but unfortunately until there is some type of formal MS registry or census of this in place it’s hard to determine statistics of others diagnosed. There is an organization called NARCOMS that tries to capture MS data for research purposes and treatment focus needs, https://www.narcoms.org/. I hope this information is helpful to you and please email MSQuestions@mymsaa.org if you have additional questions. Thank you and take care. Angel, MSAA Client Services Specialist

  • Holly says:

    Me, my brother and our aunt all have ms.

  • Nicole says:

    My mother has MS and I was also diagnosed with MS last year.

    We have both had incredibly stressful prolonged periods of life and I have to think that is linked to it. Stress/anxiety can be so damaging to our entire body.

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