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Hi all! I am a 33 yr old mother of 3 from Ohio. I was diagnosed with RRMS 3/2016. I started having Sx in 2010. Vertigo go away! And UTI's galore. Until March 2016 when a trip to an optometrist for double vision turned into "your eyes are perfectly fine, which makes me think it's your brain, I think you may have MS". Time literally slowed for a few. I spent months in the early mornings, sitting on my front porch thinking about how much I appreciate my life and everybody in it. Despite my first neurologist's suggestion of a new and improved pill form of Txas I was rushed in and out of the office. I decided to go with Copaxone since it's been around a while. Sadly it didn't work for me, I experienced the flu-like Sx and thought I was dying by my 3rd injection. I decided to find a neurologist who specializes in MS. I was one appt away from participating in the end stages of the study on ocrelizumab and backed out last minute. So now I'm getting ready to start Tecfidera, I've had the bottle for 2wks and am still trying to talk myself into starting. I just don't like medicines, I wish there were more studies done on herbs.

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  • Hi if u do not start any medication and have MS you will get sicker. That is a fact no herb is gonna cure u. Get with a program before your MS gets worse.

  • Okay yes, Jude12347 thank you for your reply. I know I need to take this medicine or I will get worse. That's why I have it. I'm not looking for a cure in herbs, just saying it would be nice to take something that is without so many side effects. It doesn't help that at my last visit one of the neurologists has a conversation with me about him trying to start a study on cumin but was denied simply bc it "wouldn't bring any money". Now that is sad!

    I will be starting my new med Saturday. Just because my hubby will be here to help with the kids in case I were to have a bad reaction.

  • Cheib, I'm Fancy1959 and I'm here anytime you need me. You have found a safe place to come and talk to others who truly understaned what you are going through. Right now, like many of us felt when we were initially diagnosed, I am sure you are feeling scared, lost, and alone. Take a deep breath and realize today there is hope on the horizon to beat this monster!!. Research is moving at a pace never-before-seen.

    The most important thing for you to think about this minute are your three children. If you ignore the MS and act like nothing is wrong you give MS free reign over your body to run amuck. Please start the new therapy as soon as possible. Your goal now is too slow the monster trying to invade your body on it's attack on your Central nervous system. The medicine today is formulated to keep disease progression and relapses from occurring. Some studies have shown that herbal remedies do not mix well with some therapies, so never take any without approving them with your neurologist first. If you need help finding a neurologist that specializes in MS, you can contact the National MS Society at 1 800 fightms and they will direct you an awesome nuerologist in your area that is a specialist in MS. Please keep me informed and stay in touch. I would like you to remember together we are stronger! Take care and here's an electronic hug coming your way!

  • Hi fancy1959, thank you for your reply and kind words! Thanks also for the hug! Truly I was ignoring my MS for a while after my experience with copaxone. I just really wanted those injections to work for me and after they didn't I became depressed and it seemed MS was swallowing my life so I pushed it away. I know this was not a healthy approach. So talking on this site for me is kind of my way of not ignoring this any longer. In the back of my mind I knew I would be somewhat pushed to take my medicine (which I know I need for the sake of my health and family). Besides that I also feel this will be a place of support, kindness, understanding, and a place full of information.

    I will not take anything with this med without approval from my neurologist. I guess the reason I am so curious about MS tx with herbs is because right after my diagnoses I watched the story of Nichole Apelian from the show Alone and she inspired me. Right now though it seems like tx with herbs is a dead end and probably will be for some time since this tx brings no money. I will be starting my med within the next cpl days, I just hope and pray this time around it goes well for me.

    I've found a great team of neurologists that specializes in MS at OSU's Wexner Medical Center. Thanks though for the information to point me in the right direction. :)

  • Hi Chelb welcome to The MSAA Community 🌸 Sorry it's for this monster they call MS 😞 I hope you find us a friendly and Informative group, but most of all Supportive!

    Each person is different on how they feel about taking or not taking DMT's. It's always a personal choice.☺ And it is yours to make. That being said, l do know where your coming from, as l was dx'ed Mar '15 and it's not been easy. But life goes on ☺

    Here is a site to help you with your DMT's if your still not happy.

    mymsaa.org/ms-information/s...

    Please though IF YOU are taking any kinds of herbal vitamins make sure your Neuro knows about them! As they can interfere wit the medication ☺

    Jes🌠

    ~Helpful Hint~ If put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

  • Hi jesmcd2, thanks for your reply. You were spot on by saying MS is a monster! I'm excited to have finally decided to introduce myself and my story on here. I've been reading posts for a few days and it seems everyone is kind and supportive.

    I will be taking my new med soon. I'm not currently taking any herbs and I sure will talk with my neurologist before taking anything new. Thank you for the link and helpful hint! :)

  • Chelb You might want to look into some of the MS diets that are out there (in addition to an Rx). Many people have commented on the Wahls protocol. Maybe going on an MS diet will help you feel more in control in a natural way.

  • lona60, I read a little about Wahls protocol after I was first diagnosed. At that time I read so much it all mixed together. I will look into this further. Thank you :)

  • Hi Chelb and welcome to the group. I am thinking of switching to Tecfidera from my Copaxone (20 mg for 8 years and 40mg for 2 years) and will talk to my Neuro about it when I see him at the end of this month. Please keep us updated on how it works for you. Also, welcome to this wonderful group. I have found it to be very helpful and supportive when I have posted.

    Jessie

  • bxrmom I also was on Copaxone 20 mg for 8 years and 40 mg for 2 years. Now I'm on Gilenya. I'll always wonder if I had stayed on the 20 mg , if it would have kept working.

  • Hi bxrmom , thanks for welcoming me! It seems to be a very welcoming and supportive place for me to turn to. I hope the switch to Tecfidera works well with you. I'm planning on starting mine Saturday.

  • Chelb, I'll add another welcome to this marvelous group of supportive and helpful people. No matter what treatment you choose or what symptoms you have, there are people here who can relate. It has been a huge blessing to me to be able to vent a bit without frightening or burdening my family.

    Please do keep us posted on your treatment plan and how you're doing.

    Erin

  • Hi greaterexp thanks for the warm welcome! I feel this might just be a special place. It's nice to talk with people who are supportive and understand. My family is also very supportive but I do feel like a burden sometimes when I bring things up.

    I will keep you posted :)

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