I have MS since 2009. I was originally diagnosed with transverse myelitis. Idk if I was misdiagnosed or not but if so I missed out on 3 yrs of DMT’s. I recently stopped taking DMT because I am over 50- I am 57 because there have been studies that say DMT’s have no effect after 50 AND if the disease has been stable meaning I have not had a relapse in a long time. Recently though my RRMS is most likely SPMS which is quite common after a number of years. My gabapentin dosage hasn’t changed. I have recently have had increased walking and balance disability and need to use a cane now so I suspected that mine has morphed into the next kind and when I asked my DR. He said that it is most likely the case. I find that yoga is the secret to keeping my symptoms at bay most of the time! My diagnosis was so shocking for me because I was a competitive gymnast so strength and flexibility was my thing. I find it very frustrating that my body is so darn uncooperative! My husband has really stepped up to the plate. I have been married for almost 30 years. My family is very supportive too so I am very lucky. I live In the country with just trees and wildlife around me so that is very good for having a relaxing atmosphere.
It is not that DMS have no effect after 50. The study is regarding the fact that after 50 your immunity starts dropping naturally so you may not need immune suppressing drugs when your body has already regulated your immunity.
It was so wonderful to hear your voice again. Agree with you, my biggest fear is becoming dependent on others. I'd rather be put in a home & forgotten than to become a burden.
I just found this and I am glad I did! I was diagnosed with MS a year ago and, like you, it is hard to sometimes have my partner talk to me about his own fears and anxiety. Thank you for having this kind of conversation, it is helping me have better insight and perspective ❤
I was diagnosed at 51 with RRMS. At that time I was 2 years into addiction recovery and trauma had played a huge part in my road to addiction. I had trauma therapy to support my recovery which was extremely difficult BUT an essential part of it was that I had to learn (in my therapists words) to INHABIT UNCERTAINTY. I was hyper vigilant because of the trauma so this was an enormous challenge but ironically put me in a better place to live with the diagnosis when I got it a year later as I had a head start on inhabiting uncertainty!! I already had a generalised anxiety disorder and I envy anyone with MS who can manage the psychological side of the disease without at least some degree of fear and anxiety. Your drum roll was justified and placing it at the top of the most difficult things about having MS I totally relate to. I remain sober and work the 12 Steps through AA which has been a life saver. Gratitude and Acceptance are key for me. The serenity prayer is helpful not just to managing sobriety but also, in fact often more so, my MS. I am "stable" on Calabradine currently but aware that the movie monster MS might attack at any time but I've made peace with that because I cannot change it. God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. I hope that some of my fellow MSers might find this helps deal with the fear. Great content guys 🙏🙏🙏
I felt this !! People would always ask me how my mum was. She was diagnosed at 16. As a kid / teen I would just answer " fine" but no one ever asked how I was. Maybe a selfish way to think , but I took care of her since I was able to( she was a single mum) and when I moved away at 16 my family said I abandoned her. She passed away Jan 2015. I was diagnosed Aug 2015. I find that I over compensate so my kids never need to take care of me. That is my biggest fear . I dont want to be a burden. I want family and friends to ask them how THEY are doing. Not how I am doing.
Great episode. Nice to hear people that understand what this life can entail & it's great to hear things from a care takers prospective. You are off to a great start. Looking forward to the next episode
Amazing! Great first episode and can’t way for more. Thanks for including the view of the partner too. I appreciate having someone vocalize that partners live with MS too!
I haven’t had a proper diagnosis but I have many symptoms right now. The one that scares me the most besides the balance problem I’m having, especially trying to navigate small areas. I worry when I choke which happens usually when I begin to drink something? Thank you so much for all the very informative information. It’s helps a lot. Blessings. Alex from LA 💙🙏
Great first episode. Optimistic and cheerful even though it’s a disease that sucks. And you’re right, we gain confidence as we figure things out. Hadn’t thought of it that way. 😊
Always consider that no matter how bad you believe your symptoms are, there are many others who wish they were you! Yes there are. Besides MS, I suffer with Adhesive Arachnoiditis as well. The combination is beyond most people’s imaginative comprehension.
Mine hit me like a stroke in my 50's and was dx primary progressive right of the bat. I sometimes think it was better than getting whacked out repeatedly. Still moving in my sixty's so keep on truckin!😁
I problem could be ok with the rrms but I am saddened that it took away the one true love I feel I've ever had. I'm not sure if it was my ms or his dementia or Alzheimer's or God. But which ever it was it's destroying me way more than just the ms is. I'd trip on air everyday if he'd be there to catch me
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We're back. Sorry everyone. Not sure what happened with our original channel but we're back.
Yay I'm so glad it's back!
So glad you're back! This is such an important topic. thank you for shedding light on it!
I have MS since 2009. I was originally diagnosed with transverse myelitis. Idk if I was misdiagnosed or not but if so I missed out on 3 yrs of DMT’s. I recently stopped taking DMT because I am over 50- I am 57 because there have been studies that say DMT’s have no effect after 50 AND if the disease has been stable meaning I have not had a relapse in a long time. Recently though my RRMS is most likely SPMS which is quite common after a number of years. My gabapentin dosage hasn’t changed. I have recently have had increased walking and balance disability and need to use a cane now so I suspected that mine has morphed into the next kind and when I asked my DR. He said that it is most likely the case. I find that yoga is the secret to keeping my symptoms at bay most of the time!
My diagnosis was so shocking for me because I was a competitive gymnast so strength and flexibility was my thing. I find it very frustrating that my body is so darn uncooperative!
My husband has really stepped up to the plate. I have been married for almost 30 years. My family is very supportive too so I am very lucky. I live In the country with just trees and wildlife around me so that is very good for having a relaxing atmosphere.
It is not that DMS have no effect after 50. The study is regarding the fact that after 50 your immunity starts dropping naturally so you may not need immune suppressing drugs when your body has already regulated your immunity.
It was so wonderful to hear your voice again. Agree with you, my biggest fear is becoming dependent on others. I'd rather be put in a home & forgotten than to become a burden.
You are never a burden to those that love and care about you.
Saaaaame
I just found this and I am glad I did! I was diagnosed with MS a year ago and, like you, it is hard to sometimes have my partner talk to me about his own fears and anxiety. Thank you for having this kind of conversation, it is helping me have better insight and perspective ❤
Thanks for tuning in. I’m so glad this resonates
I was diagnosed at 51 with RRMS. At that time I was 2 years into addiction recovery and trauma had played a huge part in my road to addiction. I had trauma therapy to support my recovery which was extremely difficult BUT an essential part of it was that I had to learn (in my therapists words) to INHABIT UNCERTAINTY. I was hyper vigilant because of the trauma so this was an enormous challenge but ironically put me in a better place to live with the diagnosis when I got it a year later as I had a head start on inhabiting uncertainty!! I already had a generalised anxiety disorder and I envy anyone with MS who can manage the psychological side of the disease without at least some degree of fear and anxiety. Your drum roll was justified and placing it at the top of the most difficult things about having MS I totally relate to.
I remain sober and work the 12 Steps through AA which has been a life saver. Gratitude and Acceptance are key for me. The serenity prayer is helpful not just to managing sobriety but also, in fact often more so, my MS. I am "stable" on Calabradine currently but aware that the movie monster MS might attack at any time but I've made peace with that because I cannot change it.
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
I hope that some of my fellow MSers might find this helps deal with the fear.
Great content guys 🙏🙏🙏
Oh wow. Thank you for sharing your story and your own wisdom.
I felt this !! People would always ask me how my mum was. She was diagnosed at 16. As a kid / teen I would just answer " fine" but no one ever asked how I was. Maybe a selfish way to think , but I took care of her since I was able to( she was a single mum) and when I moved away at 16 my family said I abandoned her. She passed away Jan 2015. I was diagnosed Aug 2015. I find that I over compensate so my kids never need to take care of me. That is my biggest fear . I dont want to be a burden. I want family and friends
to ask them how THEY are doing. Not how I am doing.
Thanks for sharing your story. This is such an important perspective.
Loved the first episode. Congratulations and THANK YOU. I can’t wait for more!
Great episode. Nice to hear people that understand what this life can entail & it's great to hear things from a care takers prospective. You are off to a great start. Looking forward to the next episode
Amazing! Great first episode and can’t way for more. Thanks for including the view of the partner too. I appreciate having someone vocalize that partners live with MS too!
I haven’t had a proper diagnosis but I have many symptoms right now. The one that scares me the most besides the balance problem I’m having, especially trying to navigate small areas. I worry when I choke which happens usually when I begin to drink something? Thank you so much for all the very informative information. It’s helps a lot. Blessings. Alex from LA 💙🙏
I have this choking symptom too. There is physiotherapy you can do. I hope you get some answers soon. 🙏
Great first episode. Optimistic and cheerful even though it’s a disease that sucks. And you’re right, we gain confidence as we figure things out. Hadn’t thought of it that way. 😊
Congrats on a great first episode!
“It’s gonna suck but it’s gonna be ok too”….thankyou I really needed this!!!..🙏🏾
Always consider that no matter how bad you believe your symptoms are, there are many others who wish they were you! Yes there are. Besides MS, I suffer with Adhesive Arachnoiditis as well. The combination is beyond most people’s imaginative comprehension.
Mine hit me like a stroke in my 50's and was dx primary progressive right of the bat. I sometimes think it was better than getting whacked out repeatedly. Still moving in my sixty's so keep on truckin!😁
شكرا جزيلا لك
Thank you very much
Got diagnosed at 50 on my birthday.
More swearing....more cowbell! Love this first one! Keep going.....
Be careful what you wish for!😍
😮😮
Tripping on air? Is it same as stepping on own feet falling down
Sounds about right 😉
For most women MS completely disappears at pregnancy time. But then later comes back.
Exactly! How is there no research into this?? Some hormone is stopping autoimmune diseases when your pregnant!
Women’s body is super high in estrogen and progesterone when she’s pregnant.
I problem could be ok with the rrms but I am saddened that it took away the one true love I feel I've ever had. I'm not sure if it was my ms or his dementia or Alzheimer's or God. But which ever it was it's destroying me way more than just the ms is. I'd trip on air everyday if he'd be there to catch me
🖤
If I’m with a men that freaks out more than me, it’s not my men.
the worst ms symptom is bowel ussues and not being able to control your stool