Family traditions re. MS: Since I am the... - My MSAA Community

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Family traditions re. MS

LeannEHl
LeannEHl

Since I am the fifth member of my immediate family to be diagnosed with MS, I happily agreed to participate in a study at UCSF, concerning genetic susceptibility and MS. Not only that, but I volunteered my hubby as a control for the study! Afterwards, the phlebotomists were grateful, but very very frustrated. Back in Canada, hubby had donated blood over 70 times, so finding a vein was a challenge for them. Oh well, we meant well.....

7 Replies

Well done you. You are helping research into why, how, and genetics. Good going, blessings Jimeka 🦋 🍫

Fancy1959
Fancy1959CommunityAmbassador

LeanneEHI, it's Fancy1959. First I don't believe I've spoken to you before so I wanted to welcome you to this awesome chat room. We promise to provide a safe place here where you can come and ask questions, voice concerns, seek information, or simply speak to others who truly understand what you are going through. This will all be provided buy some of the most caring, kind, and considerate people you have ever met. We are glad that you found us!

First I'd like to send prayers your way that your family and the five members in it, including yourself, that are fighting this battle against the monster we call MS are doing okay and feeling good! I truly have never heard of one immediate family being so inundated by a single disease like MS! It's truly something that I have a hard time wrapping my head around. But I want to send my kudos to you for participating in the research study that you are.

I can't wait to get to know you better. The more we interact with each other the quicker we will get to know each other. I know there's much we can learn from each other! I would love to hear about any and all information you can provide on the hereditary possibilities of Contracting MS. Until we speak again please take care and remember together we are stronger! Fancy.

LeannEHl
LeannEHl in reply to Fancy1959

Hello Fancy1959,

I'm assuming that your handle indicates that you are approximately one year older than me. Well, my family members that share MS are gone now. Dad had it, but it was only diagnosed post mortem. Long story there....

One of his sisters had Primary Progressive, and only lived into her mid thirties. Another started with RRMS, developed to secondary, and passed with advanced cellulitis. And finally one died years ago, before I was born, so all I know is that MS was blamed.

Dad probably started with RRMS, progressing to secondary, but died in his sleeEp in a nursing home of a massive clot in his carotid artery. He had been misdiagnosed as having had a stroke in the 1950's, but hindsight and the wisdom of the coroner concluded that it was in fact the beginning of his dance with MS.

I am the youngest of my siblings. Mom was 44 when I was born. I currently have a sister age 77 and in congestive heart failure, and a brother age 74. All three of us have type 2 diabetes, even my incredibly skinny brother! My sister and I are what you might call "comfortable".

Even though I was by far the youngest, I was the caregiver. I was very close to my Mom, who passed in 1995. Dad left us in 1997, and hubby's dad in 1996. As my son said, the nineties weren't good for their grandparents! Hubby's mother is still fine and doing relatively well, back in Windsor, Ontario.

After that spate of family deaths, we were inspired to buy a tent trailer and take our kids cross country, and intoroduce them to the few extended family members further away. Dad's one sister lived in Portland, OR, so we had a week there. There are several second and third cousins scattered across the Canadian prairies, so we hunted them down too! My boys love to recognize family, no matter how dotted the lines might be.

My eldest is now a senior metrologist ( science of measurement) with Energy Mines and Resources Canada, and lives in Ottawa with his wife and 3 cats. He travels a fair bit, demonstrating how the Canadian branch conducts their exacting measurements. Recently, he has been to Sacramento, Belgium, and is now headed to Victoria Island.

Our youngest lives in a tiny town just north of Toronto, with his wife and two little girls, as well as one ancient cat and two big dogs. He runs the Canadian branch of a Thai company, Milsig, that sells high end Paintball equipment. His first start in the commercial world was in designing patches, like team emblems, that he had manufactured in Poland. Once he became better known, Industry Canada offered him huge tax concessions if he brought the manufacture of these items back home. As such, he was able to hire several people to design and produce these very popular items! Currently, he has contracts with several military and police organizations to create custom patches. He operates this under the name of "Patch Panel", which he actually recently sold to Milsig.

So there you go, you now have the highlights from a mom's brag book! I hope this isn't more than you were prepared for!

I'm sorry that so many in your family are affected by MS. I'm so grateful to you and your husband for participating in research! Thanks to you and people like you, we will find a cure one day, or better yet, will find a way to prevent it altogether!

I can only hope that I’m not starting a family tradition. No one that I know of in my family has had the disease.

Thank you! I've participated in a study of theirs also for MS, but I was a control.

Having even one additional family member with MS is unusual, so I wouldn't worry CraigS. Fingers crossed for you and yours!