Family with MS
My brother had MS died of MS complications. He refused to get a feeding tube; he had lived with the MS sh*t long enough. His son has MS and now we have learned my son has MS. The primary progressive type. I watched my brother die, it terrifies me that I will have to watch my son go through the same. My son is pretty much bed bound, in pain, and mad at the world. If my family has the genes that pass MS on, it must pass through the male gene. My kids just had baby boys, 4 of them. I probably won't be alive to see which one of them will get MS. Can the 200 genes that contributes to MS be identified?
I am so very sorry that MS has had such a profound impact on your family,
. There are no words that I can offer that will make any part of your situation ok. It just sucks and that's all there is to it. No person deserves MS, let alone so many members of one family. While MS is not considered hereditary, it can be considered genetic. I know that seems to make no sense, but the current data shows that no one gene (as far as we know) 'carries' MS, but certain genes seem to increase the likelihood that someone can develop MS. Scientists have so far identified 100 genes that can contribute to an increased risk factor for developing MS. they have not narrowed it down much from that point.
Do you feel like your son and nephew are receiving good care for their MS? Have any treatments helped bring any measure of relief for either of them?
And, I don't blame your son for being mad at the world. MS is an incredibly cruel disease and it doesn't fight fair. When you're young (or relatively young), you rarely think of your plans being sidelined by a life changing diagnosis like MS. And, as a parent myself, I empathize with you, too. Watching our children hurt is a special kind of torture. We would give every bone in our bodies to take their pain away, yet we can't. And we can't fix the problem for them, like we could with problems when they were little kids.
I keep hope alive knowing that research is being done every day to help find the origin of MS and also to find a cure. I know it can't come fast enough, especially for your family.
I hope this link doesn't come across as mawkish, but the NMSS is sharing information about taking part in ongoing studies about genetics and MS. They are always looking for participants, including families -- https://www.nationalmssociety.org/Research/Participate-in-Research-Studies/Participate-in-Genetic-Studies. When MS seems to continue its senseless attacks, sometimes fighting back in ways like taking part in research studies can help a person feel less powerless against the disease. MS may win some battles, but in the end, we know it won't win the war.
Please keep us posted on how the men in your family are doing (including you). And, thank you for sharing here. I am sorry for the loss of your brother and for the continued toll MS is having on your life and your family.
Best, Erin, MultipleSclerosis.net Team Member.
