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    New and lost

    Hello people of the MS world,

    My name is Hanna. I'm 18 and I was diagnosed with MS in December after having an episode where I woke up with what felt like burning neck pain, and then later the whole right side of my body went numb along with increase sensitivity and the left side of my body became weak. I went to the hospital and received solumedrol for 5 days. It was all really crazy and all happened during thanksgiving break. I really don't know how to deal with it I guess? The numbness went away but I'm still sensitive to different temperatures, mainly cold. Oh and I also started Extavia on Sunday. super fun :-)

    I guess the reason I wrote here was because everything scares me and I'm looking for places to I don't know maybe relate to people. I over analyze everything and notice every ache and pain I would have normally just ignored. Which causes me to have panic attacks and such. I also feel alone, but sometimes when I read posts on here looking for comfort it scares me even more. So maybe writing one and getting replies will be better?

    I'm not alone. My family is really supportive, I've got a whole village, but I hate telling them things like "oh my right arm feels weird like heavy" because it scares them. I mean they want to know don't get me wrong, sometimes it's hard to explain.

    I feel like I'm rambling and such but this is kinda nice, rambling.
    I guess in conclusion to this rant, I don't know what my normal is anymore. I have yet to wake up and feel good, like no problems just happy and normal. I also have no one that really gets it. I don't even really get it. It's a lot.

    If you have actually read this thank you. It means a lot actually. It took a lot of courage to write this.

    -"happy" Hanna

    #2
    Hi

    Hi Hanna, wow, 18 is super young for MS. How did your MRI look? I know about the 'courage to post' thing, it makes it more 'real' I guess.

    Also, did anyone suggest testing for tick borne illnesses?

    Amy

    Comment


      #3
      New and Lost

      Welcome!!!
      I have had MS for almost 30 years and can still walk with minimal assistance although I have a lot of issues like pain, double vision, etc.

      I would suggest to you that you keep a diary of everything that happens on your MS journey.
      Dr. appointments, hospital stays, medications,(dosage etc.)
      addresses, phone numbers.

      This will save you a lot of time in the future as you will probably see many different specialties.
      They always want to rehash this information every time you see someone new.

      Good luck.

      Comment


        #4
        Yay replies!

        Hi!!!

        Yes I know, super young. My MRI had 4 lesions (that were obvious to see) and I had a lumbar puncture to "confirm" it, but on top of that the doctor in the hospital ran a bunch of tests to try and catch mimickers and my neurologist also ran many to make sure it wasn't anything else. They even checked my vitamin D which was really low. Sadly it's MS.

        Thank you about the diary, I've heard about that and will start as soon as possible! If you or anyone else on here has any other suggestion or tips please feel free to share!

        Thank you so much

        Comment


          #5
          Just try to be positive and understand that you will have some challenges to overcome. Take care of your body, consume good food/fuel, exercise if/when/however you can and get comfortable with your new self. Normal is relative and this is not a death sentence, I have led a pretty normal life since diagnosis (10/2002) and have bounced back from being totally paralyzed on the left side of my body. Be patient and I second the journal idea.
          The future depends on what you do today.- Gandhi

          Comment


            #6
            Journal

            Hi Hanna,
            I started a journal right away after my dx 5 years ago. When I wake up and feel extra dizzy or another symptom is worse, I can look back and see that it has happened before but wasn't a flare and soon passed. If I just feel terrible, I can look back and see that it is not a "new" thing, just something that happens and it too passes.

            It takes a while to get used to the fact that you have MS. For me, it is sometimes still a challenge. I am glad you decided to post here and hope the people here who understand can provide some comfort.

            Comment


              #7
              ugh

              know we care
              You are in the driver's seat, but God is holding the map

              Comment


                #8
                I get the over analysis of body parts. After all, this body of yours has let you down and you need to regain the trust. If there is someone in your family who is willing to do a lot of research and reading for you WITHOUT telling you what to do, this person could read George JelinekŽs website overcomingmultiplesclerosis and Terry WhalsŽbook. The two of them have a lot of overlap, but do disagree on some things. This person could also be your researcher on the various meds out there esp. how effective they are vs. the safety and side effects they come with. You CAN do a lot with regards to lifestyle and at this point of digesting your diagnosis, learning calming breaths would do a lot for you. If you inhale through your nose and exhale through your nose with the exhale LONGER than the inhale, it puts your body into a relaxed state.

                I told people who were curious but who didnŽt get it that MS is like the Northern Lights in terms of symptoms coming and going without warning. Unfortunately MS is not as beautiful and uplifting, but the person got the part about constant changes. You could also ask your family to read the spoon comparison of MS and how much energy someone has in a day.

                Keeping a journal would be really helpful especially in terms of getting a referral for PT or OT. YouŽd be amazed how much a PT can teach you to regain strength.

                For now, allow yourself the time to digest this crappy news and learn self-calming techniques.

                Cyberhugs.

                Comment


                  #9
                  Hi Hannah,

                  Welcome to the family, although I'm not happy to meet you under these circumstances. Take one day at a time and know that you will find a new normal. Allow yourself to feel whatever you feel and then move forward and enjoy your life.

                  Comment


                    #10
                    wow

                    Thank you all SO much. These replies honestly made me feel so much better. The fact that I am not alone is super comforting.

                    Northern lights, I never thought about it that way. My mom has been keeping up with all the comments so I'm sure she will be researching it all.

                    I told my family about how I've been down mentally and having panic attacks and my aunt actually told me that she has been feeling the same and "thinks it's sign" in order for her to help me. Which was comforting. My mom, aunt and I started yoga and I've been looking into books to read to help out some.

                    Other than that I've started school again (I had a 5 day weekend because of snow) and I've been distracting myself with homework and class. Staying at home all the time makes me feel blah.

                    Oh and do any of you lovely people use Extavia?? If yes I'd love to know about your experience with it!

                    Anywhooo thank you all for caring and commenting! Reading these makes me so happy!

                    -Hanna

                    Comment


                      #11
                      I think youŽll really enjoy the yoga. Remember, the goal is not to be good at yoga, but rather for yoga to be good for you. And if you donŽt have blocks, straps or bolsters, you will notice a HUGE benefit by using them. A yin class or restorative yoga will help loosen the tight spots and allow you to mentally find that bliss spot that you can return to.

                      Comment


                        #12
                        Hi Hanna,

                        I was dx (diagnosed) almost 30 years ago. For about 13 1/2 I did healing prayer and meditation..I didn't think about ms (I do not capitalize ms, as I refuse to give it respect ). There were no meds till 1993. I did really well !! I stopped doing what had worked for me, got cocky and decided they miss dx me My symptoms(sx) started up and I started Copaxone in 2003 for 2 1/2 years, sx were getting worse. I then went on the most effective med Tysabri and have been on it for over 11 years. It made my lesions ( MRI ) smaller or gone, I still have no new or active lesions. My sx abated (some, my biggest, R leg drags it didn't help), progression halted and I have had a great QOL (quality of life) and still do

                        I knew/know about the RARE side effect of pml . My neurologist watched/tested me. The American Academy of Neurologist did a trial and found that after being on Tysabri for 2 years those who were infused every 56 days, instead of 24 had no incidence of pml, not 1 case. I think it is still holding or my neuro would have told me. I think it's about 3 years I've been going 56 days.

                        I believe in being positive and living life. I do not stick my head in the ground but, I do not give ms my power..I may have ms but, it does not have me.

                        I am just sharing my story

                        Linda
                        Linda

                        Comment


                          #13
                          Hello Linda!

                          Thank you for sharing your story! I like hearing others stories to help me kinda of get an idea of what MS can be like and the steps I could or should/shouldn't be taking!

                          I would love to know more about the meditation you were doing and precautions you were taking those years before you stopped! I feel like I want to be able to say that I don't respect nor allow MS to have me.

                          I'll make sure to talk to my doctor about Tysabri. I was offer Extavia or Glatopa by my doctor, in which I chose Extavia since the injections are every other day rather than daily.

                          I will strive to not allow MS to have me, and to be as positive as possible!

                          Thank you!!

                          Oh and to Temagami-

                          Thank you so much! I keep reminding myself it's not about how flexible I am, it's about connecting to my body and getting to know what works and what doesn't! I'm trying to find a nice yoga place close to me that offers those types of classes!!!

                          Thank you all so much!

                          - Hanna

                          Comment


                            #14
                            Hyper flexible folks relay on that instead of building strength. So... you can take comfort in having a flexibility "issue" as it forces you to build muscle. The flexible folks "hang in the hammock" of stretch. They may look good as in doing the form, but it is not doing much for them.

                            You are already trying to make lemonade out of lemons and that attitude can get you through the rough patches. Or at least make the rough patches not so rough.

                            Comment


                              #15
                              Newly diagnosed

                              I was just diagnosed and made it through my first relapse here are a few things I learned:

                              -it did get better after relapse and in recovery
                              -anxiety is one of the toughest things I face now and trying to learn to deal with

                              im only 4 months into my MS adventure but I'm slowly adapting to it but still hard to fully accept.

                              if anything I can take away from my short experience is PATIENCE, PATIENCE, PATIENCE.

                              good luck on your MS adventure, there's lots of great ppl on this message board and they have helped me a ton in learning how to live with the stupid disease but I too, have much to learn still.

                              Comment

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