Siblings & MS

Today is my baby sister’s birthday – ok, none of us are babies anymore so I’ll switch that one to my youngest sister, but it still tells you her birth order in my family. There are five of us siblings – all female, and this day, among others, I pause and wonder why I have MS and they don’t.

Honestly, if just one of us had to have MS, I am ok with the fact that it is me. Just as I am sure the sister who had breast cancer and the other one who also had cancer are ok that it was them and wouldn’t wish it onto one of us. But I still have to wonder – why me and not them too. Should this be a solo act of having this chronic illness in my family? I think about this more in an investigative way – always wondering what it is that causes multiple sclerosis. Environmental factors are often hinted at as a clue, but I have trouble with that idea.

My parents moved into their present home just before I was born – so my three older sisters lived elsewhere for 7 years or so, but then we were all in the same small Cape Cod style house together until we were grown and went our separate ways. Through the serendipitous nature of great genetics and good health, my parents are still living in that same home 62 years later.


From my opening you know I have four sisters – making the question of gender and multiple sclerosis mute since we are all female.

Family meal times were the same for our family – those of us who are old enough remember those days when the mother put the dishes of food on the table, everyone ate together, we passed the dishes around, and we all pretty much ate the same foods. I had the same overcooked pot roast, jello salads and tapioca pudding that my sisters ate. We all choked down the same lima beans when forced to eat them – or at least 4 of 5 of us did because one sister actually likes those things.

There was no hanging out and just waiting to be entertained or being driven to all of our activities.  First of all, my mother never had her driver’s license so she couldn’t take us; growing up was also a time when parents wouldn’t take us everywhere because that was what our feet, the bikes or even the public bus was for. We spent summer days and even after school hours doing the same thing – building tents from old sheets hanging from the clothes line, riding our bikes, and going to the swimming pool.  We got plenty of sunshine – we didn’t lack natural Vitamin D thanks to being outdoors so much.

The five of us went to the same elementary school and high school. We often had the same teachers and sat in the same classrooms. If there was anything toxic in our schools besides the bullies and the school lunchroom, we were all exposed to it.

So where does the link in health get broken and allow for the introduction of whatever it is that causes MS? I would think families such as mine illustrate to the scientists that environment might not be such a factor in this disease, because if that were the case then more than just me should theoretically have MS. That same scenario would be repeated through most of the families of people reading this article right now. A big question that will be answered someday, but not yet, remains – If you have MS, why aren’t your siblings also affected?

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • CRop4
    3 years ago

    Hi Laura, this is Cindy. I was recently diagnosed with MS almost 2 months ago and I’m not surprised. I’ll tell you in a bit why. Growing, I didn’t know life any different than my mother not being able to walk or see. I never understood why. Why was she the only sick one in a family with seven other siblings? Why was she the only sick one within a huge extended family? Why? Why? Why? One day I asked her, when I was in my late teens, “Mom, what do you have?” And she told me multiple sclerosis, not some mythical hex as was perpetuated by superstitious family members who knew nothing about medicine and illness. Unfortunately, when my mother began to have strange symptoms as a teen in the 60’s, there was no explanation why the symptoms would come and go. By the time I arrived in 1969, my mother was “feeling okay,” but it was just a matter of months before another relapse occurred and she could no longer walk. This apparently is normal. By the time I was about 2 years old, her vision ceased to work. No one new why, there was no medical explanation given to her. Although MS was known at the time, there wasn’t enough information available. The doctors who worked with her, couldn’t give her treatment and reasons for her symptoms. My Mom’s family moved across three states when she was 12 years old, but none of her siblings had any symptoms of MS. So it seemed odd she was the only one to succumb to this illness. Fast forward to about 30 years. One of my mom’s nieces was experiencing odd symptoms, eventually she was diagnosed with Lupus. I never made the connection. Fast forward about 2 years after that, I went to visit my Mom’s cousins in Texas, where my Mom lived when she was very young. I noticed one of her cousins appeared very arthritic, she was stiff and had a difficult time walking and moving around. I did inquire about her condition, but I can no longer remember, that was about 15 years ago or so. Fast forward another 10 years and I went to visit family back in LA. I stopped to see one of my Mom’s cousins, who is only 3 years older than me and we grew up together. Her sister stopped by as well, and upon seeing me at first sight, she didn’t greet me, she just blurted out, “did your Mom have Lupus?” I replied, “no, she had Multiple Sclerosis.” Her sister immediately chimed in, “that’s what I have!” I didn’t quite believe her and asked her when she was diagnosed? What were they symptoms she experienced? Suffice to say, she said sometimes she had no feeling in her hands. Sometimes she couldn’t feel her feet. And sometimes her vision would go out. I told her that’s EXACTLY the same symptoms my Mom had! “When did you start having these symptoms,” I asked? She replied, they began when she was about 18 or 19. My mouth dropped!!!! “Why didn’t you say something?!!!!!,” I asked incredulously. I was so upset because it was during this time we were closest to each other. I could have shared my Mother’s illness details, but you see, everyone in my family only remembers my Mom as blind and unable to walk. No one ever discussed with her, the strange symptoms she began to have in her teens. All her Aunts and Uncles only remember the outcome, but knew nothing of her journey to the outcome of MS. Fast forward, I’m 46 years old. I’ve kept my eye on advances made with treatments for MS. I’ve been aware the lack of vitamin D is critical for sufferers of MS. I only wear sunscreen when I go swimming, and prefer to wear shorts as much as possible to have my legs exposed. I don’t worship the sun for a tan, I just make sure I get enough on my legs and never on my face. Now here we are present day. I always remind myself to get plenty of sleep and never stay up all night. It’s not good for you and doesn’t allow your body to heal and recharge. But one day, 2 months ago, I pulled an all nighter. I should have listened to my own advice because that was the beginning of having a constant feeling of anxiety and feeling lethargic. I couldn’t understand why. Then four days later, I couldn’t type anymore; my right hand would not cooperate across the keys. My ability to write was also compromised; my writing was awful. My symptoms escalated, and I began to speak as though I was fighting a hangover. My gait was slightly off. Moving my bowels was different as well. I had full feeling in my limbs, but something was wrong. Suffice it to say, I was admitted into the ER. I immediately shared with the doctor, my family’s neurological history. He immediately ordered an MRI and it was very obvious I had lots of lesions in my brain. I was immediately give the MS diagnosis. When I came home from the hospital, I wanted to know, are there other family members who’ve succumbed to this illness? I began to contact my Mom’s aunts and uncles. There were only four left, but I thought, it wouldn’t hurt. Now the cousin who said, I have MS too. I spoke to her Mom and she didn’t know anything about it. Well, she did, but at the time my cousin called her Mom and told her, she have no feeling on one side and I can’t move, please call an ambulance. Her mom, never made the connection it was the same illness my Mom had. My cousin improved, but any further health problems she had as she grew older, she never shared with her Mother. So my Aunt, was shocked when I told her. Moving on, I called my Mom’s uncle. He remembers my Mom very well. He had seven kids and he said everyone was doing great. I told him about my recent hospitalization and the diagnosis; same as my Mom’s. I also asked if any of his kids were still living at home. The youngest he said, was still there. So I asked to speak to her. She overheard the conversation her father was having with me and asked me what was I being treated for? I told her Multiple Sclerosis and she immediately said, “that’s what my sister has!” Now mind you, I just spoke to her Dad and he said everyone was fine. He remembers the outcome of my Mom’s illness, but knew nothing of her early symptoms. He never made the connection between his daughter and my Mom. I immediately told his daughter to please speak to her Dad and explain to him, it is the same illness. Not understanding way back in the 60’s & 70’s, what this illness was and known as, kept him in the dark. When I spoke to his afflicted daughter, she thought she was the only one in the family with this disease. I explained to her she was the 6th person in our extended family with this neurological disorder. Just in my Mom’s branch, there were four of us total (two of my cousins: the one with Lupus and another who has had no official diagnosis, but is experiencing numbness in her legs and awful migraines that cause her to smell things that are not there.) On further exploration my Mom has another cousin who was treated for a brain tumor, and has advised she also suffers from arthritis in her hands and spasticity. I have not been able to reach more of my Mom’s cousin’s, but it wouldn’t surprise me if MS has made another appearance with other family members. As I learned, just from speaking to a few family members, many of them don’t share illness information easily. It helps to speak up and to be transparent, because as I’ve learned with my extended family, we carry a predisposition. If my Mom’s younger cousin had known about this family illness, she would have been diagnosed sooner rather than waiting two months and wondering why she had no feeling on the left side of her body. I knew there was a risk I would succumb to this illness. And I’m aware there is treatment. The spasticity that emanates from my right hand up my arm and down my leg, has been a problem of late. But I have been given medication to deal with it and reduce the activity. If you look at me, you would never think I suffered from any illness, but I do, and I am looking forward to treatment that will arrest the progress. Until then, I will continue to share this information with all my family members and IMPLORE them to share it with their siblings and children. Laura, I encourage you to speak to extended family, you may be surprised what you find out. I don’t think you are alone. If not MS, it may be another auto-immune disorder that’s affected some of them. But why this ugly condition rears it’s head in some of us, is an answer I hope will be answered during our lifetime.

  • KellyD
    3 years ago

    I am the second of 4 children. I was diagnosed 3 years ago and my baby sister was diagnosed 18 months before me. I have a brother between us and a sister older than I. Neither of them have symptoms. Hit or miss I guess

  • DrPatC
    3 years ago

    You always raise some interesting issues Laura and you are right, in your family it’s a real puzzle. In mine I thought it was easier to see, you see I am the eldest and a girl. Then I have 3 younger brothers who don’t have MS followed by a baby sister some 18 years younger than me who was diagnosed at the same age that my symptoms began (35). With that age difference she grew up in a different era to me, different schools, different house and even different food choices. I assumed the link was genetic and female! But of course your story disproves that.

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