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  • BBBBB
    replied
    Another newbie

    Hi,

    It's good to see a group that is proactive in addressing MS. I was diagnosed in 1991, I take no medicine for MS and usually only an aspirin a day when I remember. I am now 58 and still have no visible symptoms. I haven't had a relapse in years and years.

    My weight is within the normal range, my BP is 95/65, my total cholesterol is 145. I don't run because I have bad knees from my running days of my youth but I can still outrun the average women my age on a cardiovascular stress test. I do walk regularly, five times a week, lift weights, etc.

    I have followed a low-fat diet for years (with some cheating) and I think this makes all of the difference in the world. I am definitely a fan of the Swank MS Diet that was developed by a professor of neurology and head of the neurology department at a medical school in Oregon. The diet does alleviate most fatigue problems and other symptoms as well. I also am a big fan of adequate Vit. B1 and D3, and fish oil and calcium supplements.

    A while back I decided I wanted to be of service to others with MS so I decided to start sharing information on the importance of a healthy life cycle. This went over like a lead balloon in some circles. It seems a number of those with MS wanted to sit around, eat cheesecake and burgers, gain more and more weight, and don't mind wheel chairs. Geez, I was surprised. I felt upset too because I hate to see others get sicker unnecessarily.

    Now I'm thinking that because MS is related to a lack of sunshine exposure in youth, lower levels of Vitamin D and excessive consumption of saturated fat, I should perhaps focus on trying to prevent MS in the upcoming children. Perhaps some older individuals cannot be educated because they do not want to make needed life style changes. Sad.

    How do others feel about these issues?

    Leave a comment:


  • Lab Lover
    replied
    Lab Lover

    Hi Everyone!

    My first leison appeared in 2002. I only had one and it was in my neck so they didn't call it. I was suppose to take a yearly MRI. Since last March I have been really sick. I do have fibromyalgia as well. So I kind of thought that's what was going on. After a few months I decided to get a MRI. Sure enough I had 4 new leison on my brain, however, they were not active. I am not taking any MS Medication because I'm on so many other drugs. I have been having a very hard time with heat fatigue. It makes working out very difficult. I'm not really into the pool thing. It is discouraging as I am gradually gaining weight.

    I am overwhelmed with all I need to learn to take better care of myself. As I find out new info, I often realize I have been creating some of my own problems.

    I have a question for everyone. When you have shared your diagnoses with friends and family members, did any of them act like you never told them anything? Just not wanting to talk about it. Almost a kind of denial.

    Thanks

    Leave a comment:


  • Sonya
    replied
    Hello

    Hello to everyone,

    I am Sonya, live in Alabama, got dx with RRMS in Feb 08. I am married, have 2 kids, and work full time. I did go to the gym (spin, weights) last summer and now I just don't have the time or the energy. I do swim when I can. I travel a lot for work and my job and family doesn't let me get still for long. Until I over do and collapse for a few days. Or like last week, have a little trouble driving (focusing). That episode scared us a little. I was also having slurred speech. It was 6 am so I was not under the influence of anything other than coffee!!! My neuro said it was likely from old lesions acting up, as I had not probably givenmy body enough time to recover from the previous day's drive. Just wanted to say hello and I am not as active as I wanna be, but right now as active as I can be. Would love to hear if anyone else is from Alabama or close by.

    Leave a comment:


  • agserra1
    replied
    Adrian

    Hi my name is Adrian .. I am the pessimist in this life of MS .. I don't get excited over all the new revalations that come out , I don't often get out even though I am able , and I tend to lean on the side of caution ...

    Been living with MS for 7 years now .. and can remember when 'no pain" was related to MS .. so I am sure there are plenty out there that have had some same torturous events as I ...

    While I do have a sense of humor, it takes a lot to get it to come out ..

    Leave a comment:


  • Aprilfools
    replied
    Hi my name is Lisa and I am also from the Pacific NW. I am new to MS but not new to all that comes with it.

    Leave a comment:


  • cochrajk
    replied
    What a great board...

    Hi. I am Joy...new to the diagnosis of MS; however, funny weird stuff happening for years and "possible MS" stated over and over and over.

    Used to be an avid runner...not great, just persistent. I was running 4 1/2 to 6 miles a day, and now I get so over heated if I walk 1/2 a mile, run 1/2 a mile, and walk another 1/2 a mile that my right leg begins to not cooperate with me. I would like to get back there, so I am about to begin a 5-k training plan. Determined to find a way past the leg issues.

    I live in the beautiful Pacific Northwest, so there is so much hiking, kayaking, biking, and beach walking to do...I just want to get the energy back to do it all.

    Thanks for a wonderful message board. This is great that it is so positive and the site has so much information. Thanks for replying to my post about trekking poles on another site...otherwise I would have never found this place!

    Leave a comment:


  • AmyK
    replied
    Hi

    I just stumbled upon this site happily. Was just diagnosed in May. Have been on Avonex for 6 weeks. Not convinced this is what I should be taking. Has anyone heard of Low Dose Naltrexone? If so, what have you heard?

    Leave a comment:


  • BethAcorn
    replied
    Hi All
    My name is Beth and I'm in Ohio. I just found the activeMSers site and am looking to get active, for the first time in my life.

    I was dx'ed in 1997 and have tried and given up on 3 of the dmd's. Currently I'm on Imuran.

    I sprained my ankle on Feb 1st of this year and am still in PT for it. I also started PT yesterday for back pain related to wearing a walking cast (being lopsided) for over 2 months.

    I looking forward to this experience.

    ~Beth

    Leave a comment:


  • Bridget
    replied
    hi - I'm with Dr. Apatoff - he's at Cornell Weill Med Center - but leaving there in a few weeks for some other location in midtown. Am waiting to hear about which hospital he lands at to see whether my insurance has them in-network. Awful that insurance is the driving factor for a choice of doctor; but that's our reality! I've heard of Dr. Miller - glad you like him. May be asking you questions about Mt Sinai depending on my dr.'s new hospital. I really like Apatoff though!

    I used to run the West Side Highway - I'm an out-and-back runner (instead of a loop runner). I've runthe park in those NYRR races. I like the park - but can't get used to the loop - it keeps making me think about how far I have to go to the end of the loop! I do love the Central Park celebrity sightings though - Howard Stern, Kelly Rippa...makes it interesting. I just have to get myself back out there!

    Leave a comment:


  • mina
    replied
    hi Bridget - wow I am so impressed that you are spinning - can only hope to get back to that level of exertion! I'd think if you're already doing that, running would be a cinch! do you ever run in Central Park?

    what hosp/MS center do you go to?
    I'm at Mt Sinai, Dr. Aaron Miller. He is great, very no-nonsense.

    Leave a comment:


  • Angel@
    replied
    hi all,
    I'm a 30 year old woman from the Netherlands. I was diagnosed with RR MS in sept '05. started om Avonex in okt '06

    I found "activems" as I was doing research om traveling with MS and avonex, as I was planning a trip to the USA in okt 2007.

    must admit that I'm not as active as I should be but keeping my daily life up and running can sometimes takes up too much energie and time.

    like it that this now also has a forum.
    grats on the pregnancy, Mina and hope to visit the forum often
    greets, Angela

    Leave a comment:


  • AbqMSer
    replied
    Hello

    Hi all; I have been diagnosed with MS since 1999. Trying to network and find other people to connect with that have MS as well.

    Hope to see you all at the "Quiz the Neurologist" on July 16th.

    Dave: Thanks so much for putting the effort into starting this...

    Leave a comment:


  • kinnv
    replied
    Greetings from Nevada!

    Hi Everyone!

    My name is Kathy - I was born and raised in Albuquerque but have resided in Las Vegas, NV for over thirty years. I was diagnosed with MS almost two years ago - a real shocker as I am 59 years young!!

    I am currently on Rebif. So far - so good. I have refused to let this disease get me down. I am an avid traveler and have a passion for the outdoors. I did run - ran my first marathon 4 years ago but now my little legs just won't go that far!! I do yoga daily which really helps with my leg stiffness.

    Thank you Dave for providing this great forum!

    Wishing you all a good, good day,

    Kathy

    Leave a comment:


  • Bridget
    replied
    Hi

    Hi - My name is Bridget and I'm from NYC and am single. I was diagnosed 1.5 years ago (same time and city as Mina!) and went on Avonex right away. I've had 3 relapses since I've been diagnosed but except for those times I feel basically fine and have continued by workouts as before.

    I go to the gym just about every day and really like the elliptical and spinning. I'm like a spinning addict! I also like hiking; but it's hard to get out to hiking spots from the city. I also like going out with my friends and drinking wine - is that an active pursuit?

    I used to run alot (~4 miles several times a week); but gave that up when I fell last summer (it was the beginning of a flare). I want to get back to running; but have a big mental block there. Help encourage me to start running again!

    So glad to have found this site for like-minded, positive people!

    Leave a comment:


  • mina
    replied
    intro

    hi! i adore this site & am sooo grateful to Dave for providing it. Thanks Dave!

    I live in NYC, got diagnosed with RRMS about 1.5 years ago. had only one relapse since. & just found out I'm pregnant! (yes, married too.)

    I thought I'd post that b/c I found it so hard to find info about pregnacy & disease modifying drugs. so if anyone has any questions...

    I was very active before my diagnosis & then for about a year was paralyzed with fear. Used to run, bike, do yoga, play tennis, etc. Slowly getting back into those things I love. What helped me enormously was physical therapy. Helped me differentiate what was MS-related & what was just being out of shape.

    Starting activities again improved my mood & I am back to (almost) my old, happy, optimistic self again

    Leave a comment:

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