Is it possible to get over the humiliation of this

[Jules A]

MS is partly due to having gotten a lousy genetic lottery ticket.

I agree 100% but brace yourself for the tomatoes to come a flying. Acknowledging MS has genetic propensities will bring out a whole nother faction of protesters.

Although it has been a while since we had the MS childbearing debate, lol.

[marti]

My only symptom I ever had was double vision that lasted less than a week. My doctor has given me nothing. He spent 5 minutes with me at each appointment and that was it. I have a new neurologist that hopefully will answer my questions. And I am not giving up yet, but I am preparing for if/when this disease progresses to a point to where I do not see life as worth living.



I do not plan to be an a plane to Switzerland tomorrow but I do have that as my end game plan and that is something I will not compromise on. I am hoping it is a long time from now. I still need to go to Germany and go skydiving and bungee jumping…. (and like 30 other things)



And I am not really sure how I would cope with having to walk with a cane or having bad “cog fog”… both of those would take my job from me and my job is everything to me.

I have just one more question. What is this "hell" you keep referring to? Is it the anxiety and depression issue? You don't seem to be having any debilitating symptoms, so it doesn't seem that the "hell" is pain or some other weird symptom. And believe me.. there are plenty of those! But you might not ever experience them. You might get some support and understanding here, but I truly think you need to speak with a pro. And I really, really hope your new neuro is going to be a good one who will take time with you and answer all your questions. Keep reading and studying. There is a ton of information out there on MS.

[Jules A]

Good luck Daisy. You're a pistol!

Overall a breath of fresh air if you ask me. I haven't seen this much action on our board in years. Other threads are being started and have become lively also. Nice.

[Daisycat]

I agree 100% but brace yourself for the tomatoes to come a flying. Acknowledging MS has genetic propensities will bring out a whole nother faction of protesters.

Although it has been a while since we had the MS childbearing debate, lol.

Good thing for me that I never wanted kids , even before this.... so I think I would probably keep myself out of this topic. I do have my views on this but since I don't want kids to begin with my opinion really doesn't count.

If it does have genetic propensities though I want to know why no one in my family has ever had this issue.

[Jules A]

If it does have genetic propensities though I want to know why no one in my family has ever had this issue.

Not all of us can pinpoint a family history but it does seem like many of us do have others in the family with MS or another autoimmune disorder. Autoimmune disorders tend to run in families so I consider them as well as just MS.

I also suspect that years ago more people weren't diagnosed. Maybe they went to live in a sanitarium or were just "old aunt so-and-so" who was bedridden or used a wheelchair and no one remembers why. There were a lot of cover-ups back in the day about all kinds of stuff.

[pennstater]

If it does have genetic propensities though I want to know why no one in my family has ever had this issue.

They still don't know what cause MS. Some theories involve multiple contibuters. You will see studies on genetics, environment, immune system, viruses, gut bacteria.

While it is thought a genetic component, it is not soley, as identical twins, one may have it and the other not.

Noone else has it in mine either. But we do have other autoimmune diseases.

[Daisycat]

Marti- this hell is anything that takes my independence.


Jules- as far as I know no one in my family ever had anything autoimmune. Disease and all lived to old ages and never needed a wheelchair or assistance.


So I guess I’m confused how someone with no history of autoimmune diseases gets so unlucky.

[Tawanda]

Good thing for me that I never wanted kids , even before this.... so I think I would probably keep myself out of this topic. I do have my views on this but since I don't want kids to begin with my opinion really doesn't count.

If it does have genetic propensities though I want to know why no one in my family has ever had this issue.

I haven't posted my stats in awhile: my mother had MS, I have MS, 3 first cousins on my mother's side have MS and 2 out of the 3 are siblings (brother and sister). Oddly, a sister in law, not blood, also had this (maybe it was the latitude line?).

Richard Cohen was just featured on this site. He is Meredith Viera's husband who has MS and writes and lectures about the disease. His physician father had it as well, and knew that his son Richard had it as soon as he explained his symptoms.

My daughter was 3 when I was diagnosed. Right at the time I would have one last chance to create a sibling for her. No way. I wouldn't have even had the one had I known then what I know now.

My extended family has contributed our blood to UofSF where they are uncovering the genes that may play a role in getting this "curse". I did the "23 and Me" ancestory kit when they were still identifying possible MS genes (FDA stopped most of this company's health reports, including the MS one) and I had 2 so far. They are still being identified, and even if you have them, it doesn't mean you'll have MS but could be more prone to it. One gene was "stronger" than the other, but there is still much to learn.

I am part of what they call an MS Cluster Family. I will worry about my daughter getting MS until the day I die. My mother and father already passed away when I was diagnosed. They would have been beside themselves.

Ok, fire up them there tomatoes!

[Daisycat]

If 23 and me does a dna ancestors thing about this and other diseases why shut it down? That seems like a good thing.


I’m very interested in people’s opinions on this. Never wanting kids has made it to where this curse or not I still wouldn’t have them.

[gargantua]

I also suspect that years ago more people weren't diagnosed. Maybe they went to live in a sanitarium or were just "old aunt so-and-so" who was bedridden or used a wheelchair and no one remembers why. There were a lot of cover-ups back in the day about all kinds of stuff.

That's exactly how my neurologist put it but not in terms of cover-ups. He just said when old people couldn't walk they were just "infirm" and the like, but that actually these issues were due to a variety of undiagnosed issues like MS.

[Jules A]

That's exactly how my neurologist put it but not in terms of cover-ups. He just said when old people couldn't walk they were just "infirm" and the like, but that actually these issues were due to a variety of undiagnosed issues like MS.

Yes, "infirm". With regard to covering up I was thinking of mental illness specifically schizophrenia or bipolar disorder which have significant familial ties and again years ago people were often "sent away" aka hospitalized. Same for those with intellectual disabilities or what about teen pregnancies? There was a lot of things that were pushed under the rug years ago. We have made improvements as a society in this regard for sure.

[Jennaly16]

[QUOTE=My daughter was 3 when I was diagnosed. Right at the time I would have one last chance to create a sibling for her. No way. I wouldn't have even had the one had I known then what I know now.=QUOTE]

Tawanda
I was diagnosed when my daughter was about 20 months. What made me angry was deciding treatment based on whether i wanted another child. I made the choice to worry only about my daughter who was already here, not one that was not conceived yet. Do i need to grieve the life i will not have that i thought i would, yes. Am i thankful for my healthy now 2 year old, Yes. I am also thankful because a diagnosis gave me closure. I was able to say "hmm, that's why i was tired and miserable. that's why i struggled." It hasn't been easy but i'm thankful for my daughter. I'm also thankful to know why i was feeling the way i was and now focus on living the best life for me and her (as well as rest of my family). And it does cross my mind that maybe one day she will end up with MS. But at least she'll have the biggest cheerleader giving her real-life inspiration. They may even have a cure in her lifetime!!


I get everyone handle this differently. Some are positive, some negative. I think we all have similarities in being fearful, worried, anxious and days of depression. But i see a lot of people on here not willing to give up. Being Warriors. So thank you for keeping me motivated because that is what we all need. On those bad days we need to look at this blog and see someone else is fighting the fight and we can do it too.

Daisycat- your decisions are your own. you will continue to do what you want, feel how you want and come back with nothing but negativity despite the multiple posts that are filled with encouragement. It's on your shoulders of how you want to live with MS. You become defined by it or you learn to live with it. You want a ticket to Switzerland one day, your choice. But you aren't the only one in your family affected by MS. Everyone is because you have it. Parents love you, family members love you, friends love you. They want to support you but you have to support yourself first.

[Daisycat]

Jennaly16


There is a difference in not giving up and accepting that at some point this curse makes your life not worth living. Everyone has their limit and some will live with far more than others. I refuse to lose my independence and be unable to walk, see, care for myself, work, or any of the other 100 things I fear will happen one day. Until that day I plan to do everything I can so when I do have to make that final trip to Switzerland I will know I have not missed out on anything.
If I was giving up I would be on a plane to Switzerland next month, but as long as I can live in denial about this curse I will avoid that.



On my bad days ( or bad month like this past one since it was the anniversary) knowing I have my fall back plan is the only thing that keeps me going. I do not want to die, but for me living with the misery I see this curse causing one day is not what I see as living. I am not going to ever learn to live with this curse. As I have said many times before as far as I am concerned I only have this curse twice a year when I see my neurologist. I will keep taking my medicine and venting here as needed (since I have no one in real life to talk to) but as for “learning to live with –( insert random symptom here) – I will not.


As for my friends and family, no one outside my close family- (mom, dad , and brother) and boyfriend know ( and my practice manager but that was mostly to be honest a little for my own reasons). I am not going to stay alive and suffer for years just to prevent them from feeling a little bit of sadness. And no my mom doesn’t want to support me… she wants to tell me to pray and “give my life to god”… sorry lady but I will not follow some mystical man in the sky who allowed me to be born like this. My dad just cries and my boyfriend thinks “we will deal with whatever happens”.



He is correct in the fact that I will deal with it, just probably not in the way he thinks.



As for now as far as I am concerned my life is normal. I do not have a rotting brain, I am not going to one day be half way blind and needing a cane to walk, I am not going to forget basic things that made my life mine… When that day comes I will handle it how I want to. This curse will not destroy me and I will beat it the way I see fit.

[gargantua]

We have made improvements as a society in this regard for sure.

Agreed. And as you imply, vigilance is important. There is a lot of prejudice out there when people see canes or crutches. Case in point: the ideas in this thread that needing a cane for any reason curses you. A thought!

[Daisycat]

Agreed. And as you imply, vigilance is important. There is a lot of prejudice out there when people see canes or crutches. Case in point: the ideas in this thread that needing a cane for any reason curses you. A thought!

It takea away my independence and stops me from working. I become a burden on my bf because he has to take care of me. So to me it is a curse.