I hope no one minds me posting this. I'm just looking for someone to talk to that isn't so close to me (does that make sense?)
My family just moved to the next state over. Its the first time in the 25 years of my life that so many miles have separated me from my parents and siblings. Today, my mother came to town and we spent the day going out to eat, shopping, and having drinks. As she's getting ready to drop me off at home, she stops the car, looks over at me and says she has something to tell me but doesn't know how.
The "something" is that my father has MS. He was actually diagnosed ten years ago after a freak incident resulted in an MRI with unusual results. At the time, my mother's father was dying of cancer, I had just started high school, my younger brother was starting junior high, and they decided it wasn't a good time to tell anyone.
Another reason they didn't tell anyone is that my dad's brother, my uncle, also has MS. He was diagnosed a long time ago when less was known about the disease. He was also very opposed to getting treatment when he was young and now he is paying the price. He's wheelchair-bound among other things. His daughter was also diagnosed this year after an incident in which she lost vision in one eye for twenty-four hours. Her father, my uncle, feels incredibly guilty and won't talk to her about the disease so now she calls my dad to talk about it.
The reason my parents finally decided to tell me (and my brothers will find out at Thanksgiving) is because my dad's family is full of gossips and they've recently discovered Facebook. My mother made everyone swear that they wouldn't tell her kids before she was ready but its hard to trust them not to slip up. Thankfully, I've had that side of the family blocked for quite some time.
The good news is that my father is practically asymptomatic. That is a specialist in a city near them that has been treating him for the last ten years. So far there's been no change in the amount of plague on his brain. There's no problems with his nervous system and just to be on the safe side, he's being treated with the newest drug on the market. The doctor says this is often the case with male siblings, that one will have a malignant case and the other one will show no symptoms. If my dad hadn't taken that small fall ten years ago, he may have never been diagnosed or have a reason to suspect anything was wrong.
The doctor also believes that MS is not a genetic disorder but rather one caused by a vitamin D deficiency. And yet, our family has two brothers and a daughter with the disease. And my dad has lived in the sunny deep South since he was in his 20s.
I just feel so overwhelmed right now. I've only met a few people over the years with immediate family members who have MS, and almost all of them had severe cases. I'm so happy and glad to hear that my dad has had no problems in ten years and that it is unlikely that he will develop any problems in the future. But when my mother first told me, I just broke inside. I've seen how my uncle has suffered and I was so terrified. I KNOW my dad is fine but I feel close to sobbing at any moment.
Posted by Dan_Frank (Member # 8488) on :
I don't really know what to say other than that you have my sympathy. I know how hard it can be when one of your parents is diagnosed with something so serious, even if there aren't any current problems. It's... terrifying.
If I was the praying sort, I'd offer that comfort, but since I'm not, all I've got is this hug. Posted by Shanna (Member # 7900) on :
I'm not the praying sort either so thank you.
Posted by ambyr (Member # 7616) on :
quote:The doctor also believes that MS is not a genetic disorder but rather one caused by a vitamin D deficiency.
Wikipedia actually has a fairly good layman's take on the current state of medical thinking regarding the causes of MS:
quote: Most likely MS occurs as a result of some combination of genetic, environmental and infectious factors.[1] Epidemiological studies of MS have provided hints on possible causes for the disease. Theories try to combine the known data into plausible explanations, but none has proved definitive.
MS is not considered a hereditary disease. However, a number of genetic variations have been shown to increase the risk of developing the disease.[19]
The risk of acquiring MS is higher in relatives of a person with the disease than in the general population, especially in the case of siblings, parents, and children.[4] The disease has an overall familial recurrence rate of 20%.[1] In the case of monozygotic twins, concordance occurs only in about 35% of cases, while it goes down to around 5% in the case of siblings and even lower in half-siblings. This indicates susceptibility is partly polygenically driven.
My family also has multiple incidences of MS, including my aunt the doctor (which means we hear a lot about the state of medical research). It sucks :hug:. But it can be managed. I hope your dad keeps pulling through.
Posted by BlackBlade (Member # 8376) on :
Here's hoping he remains asymptomatic. I'm not sure if I would want that sort of news broken to me in that manner, but at least you know now.
Posted by Shanna (Member # 7900) on :
After a night of tossing and turning, I think what upsets me the most is that my parents kept this a secret for so long. And I really got the feeling that it would have remained a secret if there hadn't been that chance that a relative might slip up and mention it on facebook.
I understand why my mom wanted to protect us. The last ten years have been really rough. Issues with my dad's job meant that he spent quite a bit of time working in another state or country from the rest of the family. It would have been especially hard going months without having him around while worrying about him being sick.
And its NEVER a good time to get bad news. But sooner would have been better. For the last two years, we've been living within a few miles of each other. That might have been a good time to say something, not a month after moving six hours away while my brothers are also spread out. They'll find out over Thanksgiving and then they'll have to go straight back to their respective colleges.
But I appreciate that my mom made the long drive to tell me in person and I know that my dad would have come too if he wasn't away at work. As my mom mentioned several times last night, I have power of attorney if anything happens to them and I need to know these things. I just wish they hadn't waited a DECADE.
As for the research, I was up all night looking stuff up on google. Like, even with a parent who has MS, there's less than a 5% chance that myself or my brothers could be affected. However, there's also a link between a variety of autoimmune diseases. So while its highly unlikely a whole family would be diagnosed with MS, one parent may have one type of autoimmune disease while their children may develop different autoimmune problems. Reminds me of my youngest brother who has Type 1 diabetes. There are no other aunts or cousins with Type 1, but my dad now has MS and my mom has Hashimoto's disease (she also had a tumor removed when I was young, a fact I didn't learn until two years ago. This family loves secrets.)
But the secrets continue. My mom won't tell her mother and now we have to help her keep it a secret too. My grandmother is such a worrier that it makes my decade-secret-keeping mother look reasonable.
![[Group Hug]](graemlins/grouphug.gif)