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Newly Diagnosed and Very Anxious

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    Newly Diagnosed and Very Anxious

    Hi....I was diagnosed with MS on July 24, 2013 after being brought to the hospital thinking that I was having a stroke. I was numb on my left side from head to toe and the right side of my face was very weak. After many tests that included 2 MRIs with and without dye. On that fateful day the doctor first told me that at first he thought that I had a brain tumor. He then said that it wasn't, but that it was Multiple Sclerosis. He blew my mind! It came out of the middle of nowhere! How did this happen? How was I going to tell my husband?

    I am 49 years old. I have 5 children ages 11 - 17. I also have 2 labs, 1 pug, 5 cats, and 2 amazons. I am an elementary school principal. Needless to say I have a very hectic life! How is MS going to change this

    I was not able to get a second opinion until 9/11/2013. Avonex therapy was needlessly delayed by the pharmacy, so I did not start unti 4 weeks ago. I am still receiving aftershocks of numbness and involuntary movement in the fingers of my left hand. I am just finishing a second course of solu medrol at home iv therapy. I also take gabapentin for neuropathic pain in my right shoulder and arm.
    Imbalance and knee buckling have also entered the picture.

    Muliple doctor visits and further testing have caused absences from work. Thank God everyone has been so understanding. I am getting extremely anxious about my future. My husband and kids are worried. They don't say much, but I can tell through their actions. If anyone has any words of wisdom, they would be very much appreciated.

    #2
    Hang in there!

    I'm sorry to hear what you are going thru! But don't feel alone as many of us have been there, myself the diagnosis took 5 months and then I began the avonex. It has worked well for me but the adjustment period was rough.

    A friend gave me an Ativan to try on the night of my shot and it made a world of difference and my dr gave me a prescription which was a life saver during the months of my body getting used to it. I used to wake crying in pain from the muscle aches, but now I rarely need it. Don't be afraid to use other meds to help your body adjust. The wear and tear it saves is well worth it.

    As for the fear your family feels, it is normal and healthy for you to talk about. There are more people out there successfully coping than people realize. You will probably have to slow down which is a learning curve for us all. I'm still learning! I'm currently in the worse flare up I've had but thought I had been pacing myself pretty well. I'm learning to listen to my inner circle that can see I'm pushing too hard and know they can tell when I need to slow down.

    I work at a community college and have a great group of coworkers that know I more than pull my weight the majority of the time and they always step up to help me when I'm down! So trust your support system!

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    Comment


      #3
      Hi enforcer08

      Welcome! and sorry you have a reason to join us. I had the same first major sx...half my body numb, even half my tongue....strange feeling! That was 28 years ago when there were no medications except steroids.

      I worked in the mental health field and when my facility closed I applied for disability retirement. If my facility had remained open I would probably still be working there, maybe part time, but still working.

      There have been so many advancements in the past 20 years there will be more in the future. There may be some areas you may have to cut back, and maybe the kids can help you more...but besides that continue living your life...enjoy yourself...stress has a nasty way of effecting us..I mean worry and fret not busy, physical kind...

      When I received my dx I reacted badly, pulled away from my family and ended up divorced..etc...We just didn't know the future and how to react.

      Now I have hope ...expect to go through the grieving stages..denial, anger and finally some degree of acceptance.

      Take care and come back and share
      Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

      Comment


        #4
        thanks for your replys

        You both made me feel better and put a smile on my face. I will be back to this thread and others. I have slowed down somewhat as the fatigue gets me some days. My kids have stepped up b to the plate for me from time to time. My oldest tends to be a sqeemish one and now she helps me with my solu medrol. Go figure!

        Comment


          #5
          Oh, the dreaded diagnosis. Mine happened on my 33rd birthday. Yup, the exact day. A birthday I will never forget. But, it makes it easy when people ask you, "when were you diagnosed." I was so thrown off by the diagnosis, everything else the doctor was saying became blurry.

          He wanted to show me the scans of my brain, and I was nervous to look. That first appointment we discussed treatment options and decided on Copaxone. Never liking needles, I got used to them very quickly, and now, getting blood drawn, IVs, shots? No biggie I continued to go downhill, however, so a few months later, we switched to Tysabri.

          My main symptoms are weak right leg and arm/hand. It's hard to even hold a pen or spoon, and typing this is no easy task. I can hardly lift my foot or move my toes and walking is now a huge task. I'm 34 and I'm using a cane. But, it always could be worse, right? Since I was JC+, my doctor and I didn't feel comfortable keeping me on Tysabri for very long and I was switched to the two pills a day Tecfidera.

          Thankfully, I'm one of the lucky ones who had no gastrointestinal issues and only experience flushing. I routinely get my blood checked every three months and, so far, levels look great! I am also doing PT and OT and hoping to get the Bioness, which helps you walk, very shortly.

          I'm sure, after reading all the numerous posts, blogs, websites, you notice that everyone is their own unique book of symptoms. No two people with MS will have the same symptoms. Some have zero mobility issues, but lose their eyesight, some have shooting sharp pains, some get "foggy" in their thinking, some have breathing issues, swallowing issues, numbness, extreme fatigue. The list goes on and on.

          Being diagnosed with this illness, I have experienced all stages of grief. My first was denial. For a while, I kept thinking I had something else. I even have another neurologist at the University of Miami, aside from the one in my hometown, because I wanted that second opinion. Once you finally accept it, then comes the depression, wondering about the what ifs and looking back at what used to be. Now, I'm slightly in between depression and acceptance. It's hard to accept the things that will change, but knowing God gives me another day and my body is healthy otherwise keeps me strong mentally.

          I rely heavily on my faith and have such a supportive family. You learn to appreciate the little things more and to not stress out about the little things. If a dish is left in the sink or the bed isn't made, it's ok. Best words of advice? Make sure you stick to your medicine. And remember, if it's not working for you or your lifestyle, you have many treatment options now to chose from. I personally like the pills because it quickly just becomes a part of your daily pills you take with vitamins.

          Speaking of vitamins. Make sure you are taking your vitamin D3 daily. I take up to 5000units a day, which my neurologist said is perfect. Stay away from the internet, aside from these helpful websites or the National MS Society. It will only add more fear to your diagnosis. Join a support group and attend Dinner with the Doctor programs in your area. Informative, but you also meet many people who are going through the same thing you are, of all ages.

          Do not take it personally if someone doesn't understand. I've encountered many people who ask me why my MS medication isn't working if my symptoms are still present, that figure if I just exercise then I'll become strong again, that I look healthy so it's all in my head.

          Exercise now as long as you can. If your mobility goes, it'll get extremely hard to do this. If your legs work, walk, run, do weight-bearing exercise. Keep your body as strong and healthy as you can. This will benefit you down the road. Do not be ashamed to ask for help. Have your kids fold the laundry, have your husband do the grocery shopping, prepare meals ahead of time so you can freeze them and then heat them up for dinner without having to slave in the kitchen. Do what you can to conserve your energy.

          Be your own advocate and thinker. Do what YOU feel is best. If you don't feel comfortable about a treatment, tell your doctor. If your friends or family want to go out, but you're too tired, because, trust me, there will be times when you are, don't feel guilty saying no. It's great that your workplace is being understanding about all your appointments. I'm fortunate to have a boss that's very accepting as well. It's everyone's own preference, but I told my boss about my diagnosis. I even had my doctor write a letter about my diagnosis to give to my company, in case there are ever any issues. Sometimes having a boss that knows your situation will make it easier to go to those appointments or stay home if having an off day.

          This website is great! Everyone is so helpful and understanding. If you post a question, you normally will have a response from someone that same day. There are many people you can turn to and we all understand You are definitely not alone. Whew..my hand is tired. Hang in there. Keep strong and fight. Be thankful for what you do have, and most importantly, laugh every day.

          ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

          Comment


            #6
            A most excellent post, Dream008 - and great advice given to all who have replied.

            And a big welcome to enforcer08! You have come to the right place at MSWorld. I wish when I was first dx, I wish I had known about this awesome community. It would have made a huge difference in my dealing with the scary unknowns, the feelings of isolation, and the confusion of mis-information.

            Take a deep breath, enforcer - we will be with you (as we do all others!) as we take this journey together
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

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              #7
              Inspirational replies

              Thank you so much. I must tell you at first I was a little hesitant about joining in with the community. Would it be right for me. I feel so welcome! I am so glad I'm hear!

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                #8
                What helped me a lot was that I found away to lift the heavy feeling of anxiety off my chest so I could fully breathe- it felt like a stone, a big one. I would lie at night on my back and visualize lifting the stone and one day, I was able to push it off to the side. That was enormous progress in being able to take full breaths. Anxiety = shallow breathing--> bad outcome.

                Have gone dairy and gluten free and for the most part avoid GF processed substitutes. I tested both last week and paid for it in sx- so, give it a try eliminating them. I was 2+ years without when I tested them. Got a major cotton mouth from the gluten and massive migraine from the dairy.

                Give yourself the margin of slack that will allow you to function. You are NOT at the top of your game, but you are in the game. Play accordingly.

                Express yourself in art or music, allow yourself to cry, this is a lot to process.

                Take care,
                T

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                  #9
                  Advice....

                  Much appreciated. Thank you.

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