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    First time poster

    Hello,
    I've had an account since October and I was here reading before that but I finally decided to post something.
    My first known/clear MS symptom was in November 2004 (six months after my youngest of two was born) and was officially diagnosed in January 2006 after a scary 2005 full of symptoms that were coming fast & furious. I started with only 1 large lesion on my spine and by the end of 2005, I also had lesions on my brain. I knew I had MS before they gave me the official news because 1. my original neurologist thought that's what I had when our only clue was a single spinal lesion and some numbness (I thought he was a quake) and 2. every time I got a crazy new symptom that first year, I looked it up and it was a MS symptom.
    In November 2005, I started following Dr. Swank's diet and in February 2006 I started LDN and things calmed down tremendously. I moved to a different state in 2009 and didn't have a neurologist that specialized in MS until recently but according to him I was as stable as I would have been on the Interferon shots. In December 2018, I had a brain MRI for some hearing loss, they compared it to a previous MRI I had and saw I had active lesions.

    My PCP wanted me to follow-up with my neurologist who I found out had retired.
    I also found out that a MS clinic had just been opened at the University Hospital near me so I went there and saw a specialist for the first time since 2008. Based on how long I've had MS, he recommended I do Lemtrada and because of his extensive experience with it even while it was going through trials; I decided to give it a go. I was diagnosed the first time when I was 29 and had two toddlers; I told myself then that I had to be around for my grandkids. I've had this for 15-years now and Lemtrada seems to be my best medical bet to make that happen. I did my first 5-day infusion in October.

    I did a lot of reading on message boards and searched out non-drug company sponsored blogs while I was deciding. I started my own blog to "pay it forward"; the url is in my profile if anyone is interested.
    My kids are now in high school and my 'hopes and dreams' are to be around and healthy for as long as possible. I am thinking 125; It would be kind of cool to see the year 2100.
    I've got a husband who I couldn't have made it this far without; the two kids I mentioned; a lab mix who is the best dog ever and a black cat who is a grouch (I am a cat person but she is). I have a degree in Environmental Science and worked in the Environmental Consulting field for 17 years.

    I just got my 200-hr yoga teaching certificate that I really got to teach myself and family but who knows where that might lead. Right now, I am just concentrating on getting through this Lemtrada journey and surviving teenagers then we will see.

    Thanks for being here and allowing me to learn from you all.
    Happy New Year, Amy

    #2
    Hi Amy and welcome! It's great you finally posted here.

    It's also wonderful to hear that Lemtrada is helping you keep things stable. I hope you DO live a long life and be here to welcome your grandchildren

    Yoga is a very important part of my well-being and have been doing it on and off for over 40 years! There's a class near me that's designed for people who have MS, although I don't attend that one anymore. (I now go to one for much older people ) Wouldn't that be cool if you started a MS class like that in your area?

    Thanks for sharing your story and again, welcome!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Hi Amy,

      Welcome and glad you introduced yourself. It sounds like you have a very full and active life.

      Do you still follow Dr. Swank's diet? Agree that it is a different decision as both we age and kids do. Hope Lemtrada helps make your future dreams come true. Though you may need a little more than Lemtrada to ring in 2100!
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Hello Amy and welcome!

        Thank you for sharing your story.

        I read several of your blog postings and found your journey with Lemtrada interesting and informative, especially for those who are curious about Lemtrada treatment.

        Also, I noticed that you have a Detroit Tigers baseball cap. My family has several generations of Tigers fans, win or lose. Are you a baseball fan, or is your cap, well, just a cap?

        In any case, glad to have you join us here! Wishing you success with your treatment!

        Take Care
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Originally posted by BlueIsTheBest View Post
          I am thinking 125; It would be kind of cool to see the year 2100.


          Yes. I love this!

          Both you and your attitude are welcome here, glad you decided to post!

          Comment


            #6
            Hi Amy and welcome. Look forward to hearing more from you.
            The future depends on what you do today.- Gandhi

            Comment


              #7
              Welcome, Amy! I appreciated reading your story. You write well.

              I'm also wondering if you are still following the Swank diet. I'm doing a combination of complementary strategies (lifestyle similar to Wahls protocol, functional medicine, kinesiology, acupuncture, yoga, etc) and a DMD (copaxone).

              I hope you'll keep coming back. You have a lot to offer us, and, hopefully, we can also be helpful to you.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                Hello!

                I have 4 "kids" My 2 favorite are girls - a 12 year old mutt from the pound and a 4ish year old cat we found half dead on the side of the road 3 years ago.. my other 2 are boys - they are humans... they are a much bigger pain in the butt - lol - one in high school - the other in 8th grade... give us strength to survive the teen years for sure.

                I followed Jelinek Diet for a few years - it is very much based on Swank, but also eliminates dairy and adds in a real focus on healthy fat (mostly flax) and really stressed Vitamin D

                Did it work - well - OK - to be honest - I think I felt generally better on the diet - I definitely lost a lot of weight - exercised more - etc... but the lesions/relapse kept coming despite the diet and at first Copaxone and then Tecfidera.

                I gave up on the diet - it was just too hard - and Ocrevus has FINALLY totally halted my disease (no relapses - no new lesions) for the past 18 months.

                That said - I think about going back on the diet every day...I think the evidence behind it is pretty valid and maybe combining the diet with a drug that is really working will help me start to actually maybe reverse some stuff... and honestly - since you can't be your own control group there is no way to say if maybe things would not have been even worse without the diet... I mean no way it can hurt to be healthier - right?

                Comment


                  #9
                  Thank you all for the welcome responses. Sorry, it took me a bit to respond again. I've had a lot of mental fog since the beginning of the year and am as easily distracted as a dog watching a squirrel.

                  Seasha - I have had that thought and if I ever did start teaching a yoga class, it would definitely be something specific like that. My daughter has scoliosis so I thought about a specialized class for that too. I have a lot of ideas and passion about a lot of things but as you all I am sure are more than aware; sometimes you don't have the concentration or energy for it. I hope the Lemtrada helps with that.

                  pennstater & Mamabug- I don't follow the Dr. Swank diet anymore specifically. I still don't drink regular milk and only eat cheese on pizza so my saturated fat intake is still way down from what it was and my cholesterol is lower now then it was in my 20s. After the Dr. Swank book, I read a book called the Gold Coast Cure which was/is basically an updated version of Dr. Swank's book. Then about 5 years ago I read Dr. Wahls book, the Wahls' Protocol. That's what I tend to follow now but how close I stick to it varies. I just started seeing a new functional medicine doctor who would like me to follow her level 2 diet. With three other people in the house with various likes and dislikes, it gets hard but I can't blame it all on that. Sometimes it's just hard to be disciplined. I've also done various complimentary or "alternative" medical therapies (massage, cranial sacral, accupunture, Chinese herbs, and I guess you can throw yoga in there). And I am counting on some more medical advances to get me to 2100.

                  KoKo - Thank you for reading the blog. I do hope it helps someone and yes, we are Tigers fans. My husband and I both grew up in the Detroit area. I followed the team more as a kid but my husband is still a big baseball fan so we catch games here and there.

                  jersey4ever - I am glad that Ocrevus is working for you. I agree that it's hard to stick to things when you have other appetites in the house to consider. I also agree that it doesn't hurt to be healthier.
                  The first thought I had when I read the Dr. Swank book was that it's basically the diet the American Heart Association was recommending at the time. If all we did was eliminated processed foods, we would be better off. I really believe that's one of the reason we have so many autoimmune diseases now.

                  Thanks again for your responses. Take care, Amy

                  Comment


                    #10
                    Hi Amy

                    It's nice to hear from you again!

                    Hope all is well with you and yours.

                    Keep us updated, when possible.

                    Take Care
                    PPMS for 26 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment

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