🚩🚩#findacure #listentoyourbody🚩🚩

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🚩🚩Diagnosed in May 2021 #findacure #listentoyourbody 🚩🚩

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cindymiller531 and 18 others like this

31 Comments

deborahheim Me too

Apr 02Reply

sara120077 @deborahheim I’m so sorry, I was just at hospital yesterday getting hit with a hard steroid, sent me home with MS exacerbation diagnosis, I was diagnosed in May 2021 so it’s been less than a year, I’m 44 had red flags 🚩 🚩🚩 for about 2 years, then in May of last year my first mild/moderate flare out of nowhere, I spent a week in the hospital, a week at inpatient rehab, a month with in home nurses and therapy, it hit me really hard. I’m now on Kesimpta

Apr 02Reply

sara120077 @deborahheim how are you doing?

Apr 02Reply

deborahheim @sara120077 I had started a long reply and lost it. I will write back but I want to compose it in Notes and then send it to you so I don’t lose it.

Apr 02Reply

sara120077 @deborahheim 👍

Apr 02Reply

cyn1609 2014 I’m Warrior also Girl! 🤙🏻

Apr 18Reply

cyn1609 @sara120077 How are you doing? Is Kesimpa working? I’m on Tecfidera.

Apr 18Reply

sara120077 @cyn1609 🧡

Apr 18Reply

sara120077 @cyn1609 kesimpta is working well I believe, don’t really have anything to compare it to, I like my one injection a month, I take it on the 8th of every month, I haven’t had another major exacerbation since my first flare and diagnosis in May so I’ve been diagnosed about a year, just daily symptoms every day to deal with, what’s your med like?

Apr 18Reply

sara120077 @cyn1609 my insurance denied kesimpta so I’m being sponsored right now by alongside kesimpta “the bridge program” for a year so my year should be closing up in September since that’s when I started my injections, hopefully my neurologist can fight insurance to cover kesimpta after the year since I’m doing well with no major exacerbations

Apr 18Reply

cyn1609 @sara120077 I take Tecfidera..daily pills. They did the same to me not covering anything for the first year but gave me the drug for free under the manufacturers drug free program. Big Pharma has their ways, it all works out. Sounds like our neuros are alot alike..mine will go to bat for his patients in no time.

Apr 18Reply

sara120077 @cyn1609 yeah my neurologist is great! How are your daily symptoms?

Apr 18Reply

sara120077 @cyn1609 my daily symptoms are blurry eyes, a lot of pain in the evening (I’m a 2nd grade teacher- so I come home after being on my feet all day and I’d better not sit down because I can’t get back up and the pain is unbearable, I’ve been teaching for 21 years and this is the first year I’m coming home like this

Apr 18Reply

cyn1609 @sara120077 Oh my, this devil of a disease. Everyones symptoms are different i understand. Thats wonderful you’re a teacher!! My first symptoms were blurry vision also and weakness of the entire right side of my body. Looking back I ignored symptoms until that flare controlled me. As of now i am stable its the exhaustion that gets me. I have relapsing remitting.

Apr 18Reply

sara120077 @cyn1609 yeah I just let my red flags 🚩 🚩🚩go for about 2 years just thinking I’m in my mid 40’s, this constant heat must be my body and hormones changing. I was always cold but for 2 years before my diagnosis in May my body temperature changed drastically to sweating every day. I’ve noticed the weakness in my hands and arms, my speech is off a lot of days, brain fog and unable to organize my daily teacher stuff, wouldn’t wish this on anyone, yeah symptoms are different for everyone

Apr 18Reply

sara120077 @cyn1609 I’m lucky (not that I’m happy she has it) the first grade teacher in my hallway has been diagnosed for about 15-20 years about 2 years older than me, has been a great resource, go to with my questions, and support since I was diagnosed in May

Apr 18Reply

sara120077 @cyn1609 thank you 😊 it was great talking to you, thank you for reaching out and sharing, we are not alone 😊 best wishes 🥰

Apr 18Reply

cyn1609 @sara120077 All the best and Same to you sweetie. Thats wonderful you had support from another teacher!!! Stay well. Reach out anytime please!

Apr 18Reply

cyn1609 @sara120077 With you..brainfog and loss of organized thinking.

Apr 18Reply

lorie_waite I was diagnosed in 1998. If anyone wants to reach out with questions or just to chat, I am always available . I have had many hardships with this crazy disease, but many many blessings. Hope everyone has a beautiful day!

Jun 12Reply

sara120077 @lorie_waite thank you 😊

Jun 12Reply

katdev77 As am I. Stay strong! 💪🏼☮️❤️😊

Jul 02Reply

sara120077 @katdev77 🧡🧡🧡

Jul 02Reply

katdev77 Diagnosed at 18. First year away at college. Didn’t even make it to Thanksgiving break. Was in hospital for 10 days. Legs went numb, so had to learn to walk again. Lost vision in one eye, then both (optic neuritis). Had struggled with exacerbations for years after that. I am now 45, on Gilenya, and it has changed my life. Much love and peace to all you other MS warriors out there. Stay strong and keep fighting!☮️❤️😊

Jul 02Reply

sara120077 @katdev77 diagnosed May 2021, went to hospital AGAIN not being able to feel my fingers after 4 days of constant vomiting, MRI, spent 1 week in the hospital- lost vision, but came back with constant blurryness now, 1 week in inpatient rehab, 1 month with in home nurse, OT, PT, speech therapy, now on Kesimpta since August, sponsored for a year by the manufacturer, hopefully insurance will cover with an argument coming from my neurologist

Jul 02Reply

sara120077 @katdev77 💪 I’ll be 45 in October 💪

Jul 02Reply

sara120077 @srnnyc ❤️❤️❤️

Jul 18Reply

sara120077 @srnnyc so happy you have had no new flares or symptoms and are doing well 🥰

Jul 18Reply

sara120077 @srnnyc 💪

Jul 18Reply