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    New here with a lot of questions

    Hi everyone,
    I was diagnosed with ms last week.I had brain and spinal cord MRI and they found inflammation I also had VEP which was abnormal too.I have pin and needles in my arm and legs and they both feel very tired even when I wake up in the morning I feel like I was standing on my legs for hours,I also have neck pain which is the reason I had MRI done.My brain MRI in 2009 was normal and spinal cord has the same amount of inflammation like it did in 2010.I have normal strenght and balance.My neurologist said I have Clinically Isolated Sindrome and he wants me to start using Copaxone.I know dr can't tell you much about disease but mine had no answers at all.He told me I can stay in the same condition for a long time or I can be in a wheelchair in a year too.I found this website and I would love to hear real stories from real people I don't even know which questions to ask but I want to see that there are people who can live normal life .I don't know if I should ask medicine .I have appointment with a sport medicine dr who suggest hormone treatment.I just read this book few months ago about a women who has ms in how in a few months she ended up in bed not able to move or talk and I just can't take this out of my head and I keep seeing myself in the same position.
    So please share your stories,experience and knowledge with me.Thank you
    One more thing I want to add English is my second language so I apologize for my grammar and I would be very thankful if you correct it.

    #2
    When I first found out I had MS (almost 11 years ago), I read everything that I could find. At that time, alot of it was like what you read. Very scary. I won't say you won't end up like that but as you read the comments hear you will see that alot of people manage very well (I still work full time). Hang in there. Hope for the best and prepare for the worst. There is losta of information on this website that will be very helpfull to you so check back in often.
    Webbles

    Weebles wobble but they don't fall down (much)

    Comment


      #3
      Scary yes, but...

      MS is a frightening dx. I've been dx'd for 16 years. I'm currently on Copaxone but considering stopping it.

      No one can promise you that you won't end up disabled, but it's not likely. Don't let the most frightening outcome dictate your outcome. Everyone is different and to have MS today is better than it might have been a few years ago.

      Really, I've wondered about hormones as a causitive factor in MS but there is not a lot about that. I'm almost 66 and certainly have experienced hormone loss so it interests me.

      I'm wondering why you are seeing a 'sports medicine' doctor??? What type of hormone treatment would that doctor be referring too?

      In my experience the type of doctor you see will determine what they will treat you with. There is little to no 'proof' or validity to some treatments, so you have to be cautious.

      The neuro will usually suggest DMD (Disease Modifying Drugs); the chiro will suggest manipulation (which won't cure, but will help with strength issues) and so on.

      There are many other strange or unvalid treatments also. Just don't buy into things that promise 'cures' since to this point there aren't any. Find a good Neurologist and have a straight talk with them. They only have the DMD's to offer plus symptomatic treatment, which can be hard on you.

      I'm not a person who reacts well to potent drugs, particularily to those which have 'drowsiness' as a side effect. I find Ibuprofin does as much or more for most of my aches and even my nerve pain/itch.

      I am also seeing a chiropractor, but not the traditional 'bone cracker' type. I go to 'Upper Cervical' which only treats the upper bones of the spine and is very gentle. I find this helps me; they don't promise any kind of cure, just help with energy and with agility. I am walking better, not perfect, but better. If a bone is pressing on a muscle or nerve, it makes sense that realignment helps.

      There are at this time, no miracle cures. Try not to allow your fear to paralyze you. I know of people, some on this site, who are doing well.

      I find the fatigue and my 'itch' (from nerve issues) to be my worst problems. Everyone is different.

      Hang in there. Feel free to ask questions; get professional help (*Neuro) and don't think the worst. Try to think positive; yes it's hard, but possible.

      Rest when you can. Also get enough sleep even if it means you sleep at odd times (that would be me:-)

      Good Luck. Diane
      You cannot dream yourself into a character; you must hammer and forge yourself one.

      Comment


        #4
        I used to go chiro for my neck and headaches and it really helped when I told my dr about it he said they can't help you but medicine can I guess a lot of dr don't like chiro.Sport medicine dr is my husband primary care dr when my husband mention me he suggested hormone therapy I am not sure what kind but I will see him in two weeks.
        Thanks for replying

        Comment


          #5
          The best thing you can do is educate yourself.

          First though, let me say your English is excellent!

          Here is a site that has slide shows on different MS subjects: http://www.healthcentral.com/multipl...eshows/?ap=825

          This site is an online newsletter you can subscribe to for free (all MS info should be free online):
          http://www.mscenter.org/images/stori...er09lowres.pdf

          I'm not sure any Dr can predict if you are having an isolated exacerbation (also known as a flare). I had one myself, then two years another single flare, then one year later another flare that led to my diagnosis. I was not weak and appeared perfectly normal, but my insides were on fire and i was tingly all over.

          Now, Copaxone and lifestyle changes has helped keep my MS mostly steady. Before, I never knew what was going to go wrong.
          Had I been able to begin Copaxone earlier I might not have so much damage in my brain and spine, but who knows. Personally, I am impressed that your Dr wants you to begin Copaxone.
          Hormone treatment is being studied, but not final. Personally, I would not let my Dr experiment on me.

          After 25 years with this progressive disease, I am still strong and able to stand. I can't do these things as long as I used to, but I plan my activities better. My diagnosis is still RRMS (Relapsing Remitting Multiple Sclerosis).

          My balance has gotten worse and I can't ride a bike any more, but I can drive just fine.

          Have your Vitamin D levels checked.
          Many, many of us have low levels. My Dr has me taking at least 2,000 IU of D-3. It has helped my bones not hurt so much.

          I know it is a lot to digest, but be good to yourself and know you will be in a better place. It might take longer than you want, but it's perfectly alright.
          Your life has forever changed, so give yourself plenty of time to understand and learn (I'm still doing that even now).

          Comment


            #6
            I'm sorry you've had to find yourself here, but that being said, this site is a wonderful resource and support. It's a frightening thing to be diagnosed with this MonSter. I've experienced a range of emotions similar to the grieving process, which I think many of us have. But the best advice is something someone already said...hope for the best, and prepare for the worst.

            There's no way to predict what will happen and being educated on this disease is gonna be the best way to advocate for yourself when issues do arise.

            Surround yourself with supportive people and know that sometimes our friends and loved ones may need to be told exactly what you need because they wont always understand or know what to do or say.

            And even when it seems like you're alone in this fight, just know that we're here fighting alongside you.
            Courage is NOT the absence of fear, it is going forward in spite of fear. Diagnosed 5/27/10

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