Have you ever looked back and realized you had signs of MS way before you were diagnosed?
My initial symptoms came on very quickly. I awoke one day and had trouble with my legs and less than 48 hours later, I couldn't even stand on my own. So early on, I felt blindsided, like it came on out of nowhere and happened very quickly. Over the years though, when I had more time to reflect on things, I began to think there were some signs before that.
Obviously, the disease was at work way before that initial exacerbation had caused enough damage to impair my ability to use my legs, but had I actually been impacted before that? I eventually started to remember that I did have some balance issues a year before what I thought was that initial exacerbation. I thought back and realized I'd started to have some extra fatigue, especially in warm weather, maybe a year before as well. I'd also experienced some numbness in my arms and legs months before that I sort of just shrugged off to sleeping in weird positions and various other excuses. Anyway, the more I thought about it, the more I think there were signs that something was wrong way before my big exacerbation.
How about you? Have you thought back and realized that maybe there were signs of MS way before what you always considered your initial symptoms? I'dloveto hear about your experiences,
I know exactly what you mean and am sorry. I felt like this too looking back as well. I would say I relate to the numbness and tingling in my legs and hands. Feeling extra fatigued and thinking how could this be normal. I also had pain and walking difficulties that I thought was a pulled hamstring, that lasted on and off in high school. Blurry vision too, just frustrating. Until I had complete paralysis on my right side I would just push through and ignore alot of signs. My family thought I was being dramatic and I thought I was going nuts at times. Thank you for sharing and your thoughts. This disease is so hard and unpredictable, I hate it for you and for anyone who deals with it.
, thank you for commenting here. I think hindsight is 20/20 and once you have a name for your symptoms, you can often look back and go, "Oh! THAT'S what that was!" I hope your family has come around and no longer thinks you are dramatic.
MS can definitely be pretty merciless. I am glad for communities like this one to help everyone feel less alone!
Best, Erin, MultipleSclerosis.net Team Member.Thank you
, appreciate you taking the time to chime in. I think blurry vision is definitely another one I can look back on too, now that you mention it.
I so appreciate what you said, thank you so very much for your support. We (the 4 of us) actually had to move away due to lack of understanding and boundaries. They would not go to therapy to discuss this either for what they think is right and that's it. This was 4 years ago now and it has been painfully eye opening.
That was a brave thing to do,
, and probably the best move for you and your family. I wish it hadn't come to that, but it is super important to keep your stress levels down and it sounds like they were making things worse. I hope you have settled in where you live now and that life is much more stable. Thinking of you. - Lori (Team Member)
Yes they were absolutely making things worse and they did not even want to talk about it. They would come take the kids and tell me it's best to not let them see me have such attacks. I would battle them alone alot. I went to my Oma's house during a snow storm because I got so scared of the uncontrollable shaking and convulsions I have to have support. My Mom told me that it stresses her out and if I some how killed my Oma over my MS she would never forgive me. That was one of many painful experiences I realized in therapy that was completely not okay. So the 4 of us decided enough was enough. We now like in Honokaa Hawaii which I would reccomend for anyone with MS because the temperature here stays from 60-85 only!!! It is a massive game changer seriously, I still work hard every day to have mental peace which is so important and so detrimental for what we deal with. Life isn't easy anywhere but being away from people who do not care about your feeling and the well being of YOUR situation and family is a must for us all. Choose your hard right, you have one life with this disease and I am scared and I know you guys are too but do it anyway. You have you biological family and you like I will find your spiritual family. Don't give up, you have all helped me so much not to and for that I love all of you and don't even know you. Thank you.ā¤
Reading your courage has given me strength. I am newly diagnosed and am about to be 35 and I'm still me but noone understands
You're definitely not alone in this - you have a whole community here that understands exactly what you're going through. I know it isn't the same as having the people in your life understand, but we're here for you if you ever need to vent or need some support. Thinking of you this morning, š§” Kayleigh, MultipleSclerosis.net team
Man I can't tell you how grateful I am for you saying this right now, thank you so so so much. I am tearing up seriously. Just grateful to you, I have blamed myself for so long it was something I did to deserve it. We have done EMFT therapy for all of us too and wanted the kids to have a voice in the matter. I can't say thank you enough for the validation, SO needed. Just you saying this I told my husband is the clarity so needed in my headspace when all you do s ok sometimes is repeat these scenarios in your head like wtf!
, so glad I could help! Sometimes, it does help when someone outside of the situation can say, "Hey. I see you. I see how hard you have worked. You are doing great. Keep going". I am glad I could be that voice for you today. 😀
Erin, MultipleSclerosis.net Team Member.Thank you so very much, you truly were this for me and I appreciate it so very much. Thank you again.š
