Treatment and Genetics

By fiwj

1 min read

I was diagnosed 6 months after my eldest daughter was born (26 years ago) at the age of 27 after quite a lot of hospital admissions and then a follow-up appointment by myself where the consultant said, "Well I think you know you've got MS don't you?" I had no idea. I went on to have a second daughter 3 years later having been assured that there was no genetic link.

At 23 years old she has just been diagnosed as was my mother at 63 years old. Genetic link? Familial link? Who knows. All I know is that I feel incredibly guilty that I may have passed the illness onto my beautiful daughter. Every day is a struggle. I now have fibromyalgia and epilepsy as well, but you put on a smiling face don't you, even though your pain is so bad you can barely stay awake, let alone get out of bed! And your heart is breaking.

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Lori Foster Member
It is easy for me to sit here and tell you that you shouldn't feel guilty, <inline-mention user-id="3989928" username="fiwj"/> , that despite all the families that have MS in multiple generations, researchers have still not found a genetic link, but I know that hard to accept. We do know now that genes can play a part in increasing the risk of MS, but that information was not likely available 26 years ago. Here is a wonderful article by one of our advocates about MS and heredity that might interest you: <a href='https://multiplesclerosis.net/living-with-ms/heredity-genetics-family' target='_blank'>https://multiplesclerosis.net/living-with-ms/heredity-genetics-family/</a>. Sending lots of hugs and the best of all wishes your way! - Lori (Team Member)
1. fiwj Member
 Hi Lori thank you for your reply and best wishes. The article was really helpful as well, written in a way a lay person could understand! Thanks again, Fi
2. Lori Foster Member
 I am glad it was helpful, <inline-mention user-id="3989928" username="fiwj"/> . Thinking of you! - Lori (Team Member)
judyvarley Member
Guilt has not been my experience. I wish it wasn't anyone's. We've got it that in my opinion is enough. Take care out there every one of us, please.
1. fiwj Member
 Thank you for your reply, you're right, guilt is not something I should feel, I'm working on it!
justyravgjoe Member
Just because they haven't found a correlation or a relationship within a families genome doesn't mean one doesn't exist. It might not fit the term "hereditary" as we know it today, for now we use "genetically disposed". However, it doesn't change the fact that it runs in families, period ! I have read too many articles where multiple generations have been diagnosed with MS , including this one. My mother was diagnosed with MS around the age of 40, when I was about 4 years old. Around the same age I ( now 54) , started having the symptoms I knew quite well , as I never knew my mother without MS. Since that time my symptoms have been getting progressively worse, ( not nearly as bad as my mother however - not yet anyway) . Despite dealing with symptoms on a daily basis I have yet to be diagnosed based on current criteria. But because of what I experienced with my mother, over the years I have slowly changed my lifestyle, and eating what some would consider a restrictive diet at this point ( no gluten, no dairy, organic when possible, fruits and vegetables, fish and other proteins high in Omega 3 and other fatty acids). Exercise is pretty much out, as physical exercise makes symptoms worse, but I stay busy doing household chores , which at times are taxing. What needs to happen is doctors need to inform patients it's a possibility that depending on conditions, MS may occur in your family or when planning to have a family. Now I get to add the worry if my daughter will have MS while myself and everyone else out there tries to deal with living a "normal" life on a daily basis.
f5hwo4 Member
I understand your pain, I was diagnosed with MS when I was 55, my son was 27 at the time. I had two aunts with MS when I was pregnant but was assured by doctors that MS wasn't genetic. My mother died 10 years before that of ALS. The doctor who treated my mother was doing a study of her family. She told me that my sisters and I would have a 50 percent chance of MS or ALS. I have had eleven people in my family die of ALS including my youngest sister. One of my aunts with MS had a severe case and died young. My other aunt developed lymphoma and died at 75. My son and his wife have decided not to have children. I can not spare him from any future genetic disease at least the genetic chain stops with him. I was afraid my husband and I would have a lousy retirement because of MS. My husband had some health problems the first year and now we have Covid keeping us at home the second year. We have friends at are ill with different problems. I realized that my MS hasn't made a difference, life is. Potter
njb3 Member
I've always believed a genetic link is a factor in developing disease. Just because science can't prove it with statistics, doesn't mean it doesn't exist. It is not your fault.
wvdarren Member
What you share along with SOME genetics is a gut biome and environmental factors. Studies are showing connections between the gut biome and MS.
f5hwo4 Member
It must be gut biome in my family, my mother's family is in the West Virginia area. They were poor to the point of starving. I grew up in the Kansas, lots of windy fresh air my father grew a acre garden every year with no chemicals. Potter
1. Lori Foster Member
 Those are some extremely different environments, Potter, (<inline-mention username="f5hwo4" user-id="3977349"/>). Given the amount of MS in your family, I would say that's a good argument for a genetic influence. Best wishes. - Lori (Team Member)