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    Newish to the site

    I joined this website probably 6ish months ago or more and I never really did anything with it. So i guess this will be my start.

    I am 29, a parent of one child age 4, and Married. I was Diagnosed with RRMS September 2017 after a hospital visit caused by what my neurologist says was a relapse. She's not set on RRMS but I do have multiple scars/ lesions that suggest Ive had MS for a while and had multiple Relapses in my life.

    I honestly wish there was a way to tell how old the scarring was on my brain so we knew how long I've had MS but the best guess is since 2009-2010 since that's when my first notable symptom occurred and was diagnosed (Hypersomnia) which they have determined is caused or at the very least exacerbated by my MS. Currently I am untreated..

    I tried Copaxone when I first got my diagnosis, but couldn't function as the side effects were more debilitating than my MS seemed to be. I have opted temporarily out of other medications due to also being JC positive with high levels and not wanting to risk PML the only medications left outside of copaxone wouldn't allow me to conceive one more child. My spouse and I plan on revisiting the medication options after we have our second child in the next year or so.

    I am aware of the risks but at this point I'm rather stubborn and potentially depression could be clouding my judgment. I just greatly dislike how all the disease controlling medications seem to make me feel worse or can kill me. I always thought Finally knowing whats wrong with me would solve a lot of problems but now it feels like it's just made me aware of how hopeless my life actually is.

    Id like to enjoy what little quality life I have left before giving completely. I feel like my opinions would differ had doctors actually diagnosed me earlier in life instead of ignoring my health issues up until I had a severely hard to ignore symptom occur. But as it stands, I have hypersomnia, Vertigo, fully body fatigue, vision loss, mood disorder, Depression, Anxiety, aphasia, and various muscular skeletal disorders that make functioning in any capacity extremely painful. All of these issues Ive gradually developed over the last 10 years, Vertigo and Aphasia being the most recent.

    Thank god for spell check and people to proof read otherwise i fear this entire post would be an incomprehensible mess. I haven't fully come to terms with everything and Depression has taken a hold of me pretty hard, main reason why This is my first post. and I am proboaly doing it wrong, so apologies there.

    How about some good things, Despite my issues I still enjoy being out in nature, gardening, being a parent, having pets, art, crafts, playing games, reading, and cooking.. and I attempt all of these with the aid of my friends and family.

    I guess if there is anything I left out that should have been in this post, feel free to ask me?

    ** 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. **
    "The way we feel about what we do, is by who has watched us."

    #2
    Hi AltoTabo and welcome to MSWorld.

    I really hope you are seeing a Psychiatrist to treat your depression/anxiety/mood disorder.

    I was diagnosed with MS long before there were any treatments for this disease. Betaseron was the first Disease Modifying Therapy and became available to the general MS population in 1993 ~ by lottery. I had a lottery number but decided to wait as it was the first of it's kind. Through the years I have chosen to not take a Disease Modifying Therapy. I have been diagnosed for 34 years with symptoms that go back to childhood.

    Thank you for your introduction
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

    Comment


      #3
      Hi AT.

      Yep thank god for spell check.
      I enjoyed reading your post. And can identify with delaying or not posting because of not being in a good place and so on. A lot of us come and go for similar reasons.
      Some never post but read the posts of others.
      I look forward to reading more of yours.
      Thanks for sharing.

      Comment


        #4
        Originally posted by SNOOPY View Post
        Hi AltoTabo and welcome to MSWorld.

        I really hope you are seeing a Psychiatrist to treat your depression/anxiety/mood disorder.

        I was diagnosed with MS long before there were any treatments for this disease. Betaseron was the first Disease Modifying Therapy and became available to the general MS population in 1993 ~ by lottery. I had a lottery number but decided to wait as it was the first of it's kind. Through the years I have chosen to not take a Disease Modifying Therapy. I have been diagnosed for 34 years with symptoms that go back to childhood.

        Thank you for your introduction
        I'm in and out of counseling/therapy for the length my insurance allows and even then it really hasn't helped with depression other than forcing me out of the house once a week. sometimes having to go to therapy causes issues too because i have to do it alone and i have to find child care and a lot of things just don't work out causing a lot of stress on me. My neurologist doesn't like that i'm not on DMD and I can't tell if its just the big " what if, what will happen next" that comes with having untreated MS or if there is a trend with mine that makes her worry for my life. I seem to have snowballing symptoms and she has been considering changing my diagnosis from RRMS to PRMS or whatever its called where my symptoms just get worse instead of coming and going.
        "The way we feel about what we do, is by who has watched us."

        Comment


          #5
          Hi AltoTabo and welcome to our site. We're glad you reached out to us but I'm sorry for the reasons behind it. You have a lot going on, symptom wise, but it's good to hear you still have a family and friends who are lending support. That is so important!

          It's good to hear you have been seeking counseling and therapy, but I'm wondering if they have brought up using a rx for a anti-depressant? Many of us, including me, have found advantages of taking this. Depression can be situational and "studies have shown that depression can also occur as a result of MS itself, because if MS lesions happen to occur in areas of the brain that are associated with mood they can lead to depression."

          This article explains much about MS and depression https://www.mstrust.org.uk/a-z/depression

          I hope that you can get that depression under control. Are you taking anything to treat your symptoms? Medications for these are things you CAN control when everything else seems out of control.

          I wish you well
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment


            #6
            Thanks for sharing and welcome aboard.
            The future depends on what you do today.- Gandhi

            Comment


              #7
              Welcome

              Hi, and welcome. September 2017 was my dx month and year as well. I had a RRMS dx and went from wheelchair to walker, cane then treadmill running again in the winter last year. Did a 28km hike in July.

              Ever since my dx attack from a bad flu and then recovery almost back 2 %95 I’ve been on tecfidera and my MRI this August showed no activity.

              just thought I’d share my story, we got dx same year/month and I hope your feeling great!

              Comment


                #8
                Welcome.

                It is really hard to get a feel when depression and anxiety cloud our thinking. MS itself can cause it, but also being fairly newly diagnosed, it can cause a situational type of depression and anxiety. I do hope whatever the cause, you can get this treated effectively. Side effects from untreated depression and anxiety can also contribute to MS like symptoms.

                Before your neuro changes a diagnosis, make sure you discuss the impact it could have on medications. I believe as long as still in the relapsing definition, they would be open to you, but that is me guessing. Especially if you are considering going on meds later after pregnancy. You don't want the option taken away.

                Best of luck.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  Originally posted by Seasha View Post
                  Hi AltoTabo and welcome to our site. We're glad you reached out to us but I'm sorry for the reasons behind it. You have a lot going on, symptom wise, but it's good to hear you still have a family and friends who are lending support. That is so important!

                  It's good to hear you have been seeking counseling and therapy, but I'm wondering if they have brought up using a rx for a anti-depressant? Many of us, including me, have found advantages of taking this. Depression can be situational and "studies have shown that depression can also occur as a result of MS itself, because if MS lesions happen to occur in areas of the brain that are associated with mood they can lead to depression."

                  This article explains much about MS and depression https://www.mstrust.org.uk/a-z/depression

                  I hope that you can get that depression under control. Are you taking anything to treat your symptoms? Medications for these are things you CAN control when everything else seems out of control.

                  I wish you well

                  Honestly all I can do is do therapy.. I have PTSD and GAD outside of my MS and mood stabilizers and other depression medication cause me to be quite suicidal.. I've been off and on every well known and a few not well known depression meds when they had misdiagnosed my anxiety when I was younger and they discovered medication is not a good route as far as controlling the depression.

                  We Still haven't really figured out if its medical depression or if it's just the trauma of when and how I got my MS diagnosis on top of my already difficult life that's causing me to be depressed because who wouldn't be in my position. I went to therapy for adjustment disorder and that was pretty helpful and I'm currently on a break as I'm also currently dealing with a very big move soon.

                  I am on Adderal to help with my hypersomnia and i'm on prazosin to help control my PTSD induced nightmares, And I take multivitamins to help keep my vitamin D levels up because I have a vitamin D deficiency. I need to figure out an affordable diet to maybe help with weight control and energy levels. My husband is a nurse and we are all very well versed on my plan of care. I'm currently just trying to find a balance with everything.
                  "The way we feel about what we do, is by who has watched us."

                  Comment


                    #10
                    Hello Alto Tabo!

                    Hang in there! You are 29 and knowledge is rapidly expanding so it is likely that tremendous strides will be taken in the treatment of MS and MS symptoms during your lifetime which will benefit you greatly.

                    For now, please don't do anything which might disqualify you for an approved DMT should you change your mind and desire to try one. Some insurance companies will not pay for some very expensive DMTs if your diagnosis is PPMS rather than RRMS.

                    Right now, Ocrevus is the only DMT approved for PPMS. Any insurance company paying $76,000 a year (last year's average cost of an MS DMT) for something not even approved for the condition or disease could legally stop at any time.


                    Of course, they would have to pay for symptom management, however, not for a DMT unless it was Ocrevus, the only approved DMT for PPMS.


                    All I am saying is don't let your neuro make a decision which can limit your options. Your husband will help you if this isn't making sense but you are bright and on top of things so I believe you get my point.


                    I believe in you! There is hope, health, and happiness ahead for you. Do what you can within your limits to improve your life... diet, attitude, friendships, family life. Take small steps but meaningful ones. Your loved ones need you! You are absolutely the right person for them! Fulfill your purpose in their lives! I trust you will because you are amazing, you really are!

                    Best to you!!!!!

                    Comment


                      #11
                      Welcome, AT.

                      Sorry to hear of your symptoms, your diagnosis and your depression.

                      Please keep coming back; we're usually a fairly supportive bunch.
                      ~ 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.

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