2 out of 3 is bad

[bigsisterlittlesister]

I was just wondering if anybody else out there has siblings with MS. I am a middle child. i have 2 wonderful brothers who both have MS. My younger brother was dx at 16 (he is now 25) my older brother was dx at 26 (he's now 30). I'm 29. Sometimes i feel so guilty that i am the one who didn't get it. I have been to every Dr's apt, MRI, spinal tape and IV steriod treatment they have had (till recently). I reseach and volenteer and listen to them when they have any problems or issues MS related or not.

My question/vent is does this guilt ever go away? How does a disease that affects mostly females pass me and go on to my 2 brothers (who by they way spent most of their lives not in the same state. On lives in Nj his whole life the other moved to Va when he was 10. So i have a hard time wrapping my head around the environmental theory.)

I think it is just hitting me harder lately because there is progression with my younger brother who is on TY, so it feels like i have to readjust.

Sorry just needed to vent to people who may understand what it's like.

[Lendi]

It sounds to me like you're a very, very kind and loving sister. I don't know aobut your brothers but that would count for me way more than whether or not you had MS. It's not like it's your fault. Perhaps you were put in this world to be their support and that would be much, much harder if you did have MS yourself.

[bigsisterlittlesister]

Thank you Lendi. I do my best and they do apprecitate it, we are all very close and always have been. I do believe all things happen for a reason, so maybe you are right and my reason is to be support for them. Having MS is a very hard thing to live with and watching the people we love suffer with it is hard also. There are just days i wish i could do more, but i have to think that is a common feeling.

[Sequoia]

You might want to take a look at this recent thread about genetics and MS:

http://www.msworld.org/forum/showthread.php?t=109683

It's not the first discussion we've had about the subject, and I'm sure it won't be the last.

[concerned40]

My Sister was dx at age 39 a year ago with MS and I'm in Limbo with what looks like MS and I'm almost 41. My younger brother who is 35 has no SX of MS at this point. Not sure how to answer your question regarding guilt at the same time you are not past the age of safety for developing MS either. I hope you don't develop it but at the same time even if you don't your supportive spirit should never make you feel guilty. You are a great Sister.

[Tomjadg]

I'm not sure why you would feel guilty. It's not like you had a choice like "I will have what's behind door #1"

You sound like an excellent sister, and very supportive.

Things dont happen for a reason. I have MS, because I just got it. There was no reason.

Keep being supportive like you are. That is your "medal" in life.

[bigsisterlittlesister]

You might want to take a look at this recent thread about genetics and MS:

It's not the first discussion we've had about the subject, and I'm sure it won't be the last.

Sequoia: both brothers are giving blood for genitic research this afternoon. I'm sure this will not be the last time it will come up.

[bigsisterlittlesister]

I just want to add, i don't feel guilty because i don't have MS, i guess i feel guilty because my younger brother lost a lot of experiences that i have had (he has been blind since he was dx. and now his gait is not good and he needs a power chair for any time of distance). And since the TY isn't working and he is still progressing while on it, these feelings are coming up all over again.
I know i'm not out of the woods yet and there still might be a chance but i'm not worried about that now. I can only handle one thing at a time

[Jules A]

I'm sorry this happened to your brothers. I can only imagine how sad that makes you. My mother always says she wishes she got MS and not me.

The medical community and also MSers have been very slow on the uptake with regard to the genetic implications and it really frustrates me because I think there is information there that would be helpful to us...if only people were willing to explore it.

[Sir-Voor]

As an older brother I will feel guilty if my little sister gets MS.
I’m 48/ dx 9 yrs ago and she is 42, if she gets MS.
To me it means I did not do enough to have her to the right stuff to reduce the chances of her getting it.

Now have you had your vitamin D & B12 levels checked?
Are you doing any exercising?
Have you researched ways to reduce you odds of getting MS?
If not maybe you should feel guilty?

Otherwise you should feel thankful to them for giving you a heads-up, and I’d be more worried about them feeling guilty about being a burden on you.

I know one thing I try not to worry about, is if someday I will be a burden on my family.
I know I would do anything for family, and they do anything for me.
But sometimes can’t help myself and worry, right now it just is a driving force to get me to stay independent.
I’m thinking you should talk to your brothers about, what they are feeling.

P.S. You sound like a great sister.

Now you have to access me, I have a phone call to my little sister to prep/plan for.
Any advice?

[0485c10]

The medical community and also MSers have been very slow on the uptake with regard to the genetic implications and it really frustrates me because I think there is information there that would be helpful to us...if only people were willing to explore it.

actually the medical/research community is speeding up the genetic part of ms susceptibilty... in the Human Gnome Project to mapp the dna structure of humans.

many dna structure are being discovered that are common in people with ms but not in the unaffected population.


it just as these genes are discoveed meds to combat the effect of the genes need to be found.

you and your brothers may be people who could give blood samples for this project. you may have a greater purpse than just supporting your brother(which is very important too) you may be the person who the use to identify why some don't get ms with a strong familiy connection....so you might have a greater purpose than you could ever imagine! only god knows what purpose a person has in life.

http://en.wikipedia.org/wiki/Human_Genome_Project

http://www.ncbi.nlm.nih.gov/pubmed/8849440

http://www.chg.duke.edu/diseases/ms.html

[Jules A]

To me it means I did not do enough to have her to the right stuff to reduce the chances of her getting it.

Now have you had your vitamin D & B12 levels checked?
Are you doing any exercising?
Have you researched ways to reduce you odds of getting MS?
If not maybe you should feel guilty?

Please don't own this guilt. There are many people diagnosed with MS every year and if exercise and adequate levels of vitamin D and B12 are all we needed to do to save us from getting this miserable disease most of us wouldn't have it.

[bigsisterlittlesister]

Sir-Voor:
I have a yearly physical and a full blood panel, since they know my history they run everything. I also try to have an MRI every few years to rule it out (luckily i have a doctor who thinks catching MS early is the most important thing). I am very active, although i don't go to the gym. The one thing i haven't done is research ways to reduce my odds. I keep as healthy as i can, but since nobody knows exactly what causes it it's a little hard to reduce.

Luckily for my family we don't consider anything a burden really (and trust me my brothers have no problems asking for things) we just basically do what needs to be done. Whoever can do it does it, never a question. We didn't have much but we always have each other

I talk to my brothers all the time about MS and everything else they can think of. My older brother's major concern is that i take care of my niece if anything get too bad and he knows i will. My younger brother says he has spent more years of his life (that he has memories too) with MS than without so it's just who he is and not to worry. (yeah right, not worry.) But i give him his space and he calls when he needs to. But i speak to them both at least once a week.

As for you sister's phone call, Say I love you at least once and ask her how she is and actually let her tell you

JULES A: I can relate to your mother, but i did tell my brothers that once and the older one said "I would never wish this on anybody, especially you, just keep making my doctors appointments because i hate doing that"

[Sir-Voor]

Well you just confirmed it, you are a great sister also with a great family.

I game across this video the other day, I think may help you understand your “why not me” question.
http://www.youtube.com/watch?v=N_yrN...eature=related

It sound like you have a good doctor and are on up of things, but I recommend check to see a vitamin D was included.
Too many doctors still dept the importance of vitamins.
Although there is some debate as to if D supplements increase or decrease the odds.
So maybe it is not important.
But I will recommend for you and your brothers switching to daylight bulbs, I had my standard 4’ office lights at work change last fall. I don’t know for sure they will affect D levels, but they may. And I do know that they have helped my winter mood, less strain on my eyes, and a sleep better.

Jules,
Thanks, it just that last year I went from being passive about my MS to being vary proactive. and wow I have enjoyed the difference it has made.
And this thread reminded me that I need to try to get some family members to be proactive also. (without being too pushy)
So its more of a matter of wanting to avoid possible feeling regret, I have enough “What IFs” I my life as it is.

I know God has put me on this MS experience path for a reason, and her path for a reason. Just have to do what feels right and adjust to what ever happens.