Announcement

Collapse
No announcement yet.

Officially Diagnosed Today

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Officially Diagnosed Today

    Hey, everyone. I知 a long time lurker, second time poster.
    I was officially diagnosed today after 5 years of symptoms, 2 years of knowing I probably had MS, and 15 months of exhaustive testing.
    My specialist recommended I start Copaxone as it痴 an older drug with less side effects, so I値l start as soon as insurance approves it.
    I just wanted to post an introduction as I値l probably be posting more often now.
    I look forward to talking to others with MS as I don稚 know anyone personally with the disease.
    的知 pretty and tough, like a diamond. Or beef jerky in a ball gown. - Titus Andromedon

    #2
    Sorry that you have gotten this dx, but at least you can address it with a neuro and a DMT. Your proactive approach of having been on the site has put you ahead of the learning curve. Have you checked out the final ICER report that details the latest MS research and interventions?

    Comment


      #3
      Originally posted by Temagami View Post
      Have you checked out the final ICER report that details the latest MS research and interventions?
      No, I haven稚 come across that yet. I have read lots of NIH articles and poke around on the BartsMS blog a bit. I haven稚 researched interventions much as part of me was worried I壇 never get a diagnosis so I felt that looking into that was a waste of time.
      Mill definitely look into it though as I feel it痴 best to understand everything to the best of my ability and I also find it very interesting. (I work in the medical field so I like to read all sorts of stuff. The more unusual, the better!)
      的知 pretty and tough, like a diamond. Or beef jerky in a ball gown. - Titus Andromedon

      Comment


        #4
        Originally posted by IntoDust View Post
        Hey, everyone. I知 a long time lurker, second time poster.
        I was officially diagnosed today after 5 years of symptoms, 2 years of knowing I probably had MS, and 15 months of exhaustive testing.
        My specialist recommended I start Copaxone as it痴 an older drug with less side effects, so I値l start as soon as insurance approves it.
        I just wanted to post an introduction as I値l probably be posting more often now.
        I look forward to talking to others with MS as I don稚 know anyone personally with the disease.
        Hi IntoDust and welcome

        Glad you joined MSWorld, and looking forward to your posts.

        I'm sure you are relieved that the exhaustive testing is finally over.

        Good luck with whatever DMT you decide to use.

        If you have any questions, just ask and we'll be glad to help if we can.

        Take Care
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Hi IntoDust,

          Welcome to MSW, sorry that you are here but glad your lurking days are over. Another point of view is always a plus.

          You said that "I like to read all sorts of stuff," related to MS, may I suggest a look at Marco's posts, IMHO he is on the front line supplying current MS info and research. Just one of many who share their findings in this community.

          Good luck! Oh, and "C" is really easy with no side effects when I was on it.

          Jer

          Comment


            #6
            Originally posted by 502E79 View Post
            I suggest a look at Marco's posts, IMHO he is on the front line supplying current MS info and research. Just one of many who share their findings in this community.
            I致e read quite a few of his posts and really appreciated the information!
            的知 pretty and tough, like a diamond. Or beef jerky in a ball gown. - Titus Andromedon

            Comment


              #7
              I also read Bartエs blog and would appreciate a person with your background explaining it without the detail of the biochemistry so I can understand it better- feel free to start a Bartエs Blog for the Rest of Us thread.

              Have you seen the blog by wheelchairkamikaze?

              Comment


                #8
                Originally posted by Temagami View Post
                explaining it without the detail of the biochemistry
                Ha ha... I need to find that person too! I have a hard time with some of the posts on that blog because I haven稚 studied anywhere near that level. I can definitely understand the context but some of the details go into my brain like, 鉄o, yeah. The T cells did some stuff and then some more stuff happened. Oligodendrocytes - I know what those are. It痴 the sweet spot of cognitive issues meeting lack of higher education, for sure.

                As for The Wheelchair Kamikaze, I致e only come across 2 of his posts on his blog. I should look into it more because his situation is such a mystery. I hope he痴 recruited to do some studies on high field MRI. What we could find out could be a game changer.

                Another good blog is Matt痴 MS Blog. He breaks down the details exceptionally well. He also lives in the same city as I do. Small world, huh?

                Im definitely going to start blogging myself, because, who doesn稚 blog these days? I think I really just need an outlet because I don稚 want to bore my family and husband to death with something they池e not invested in, you know? Anyone else on here with a good blog?
                的知 pretty and tough, like a diamond. Or beef jerky in a ball gown. - Titus Andromedon

                Comment


                  #9
                  Welcome to our board, IntoDust!
                  ~ 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.

                  Comment


                    #10
                    Yep welcome intodust,
                    At least you're out of limbo now and can plan ahead.
                    Blog- whats that!!!! some new invention my old cog fog brain has gotta learn an relearn.
                    if you do blog , please don't forget to post here as well . i have enjoyed reading your posts so far and this old dog aint up to learning new tricks.
                    Caroline

                    Comment


                      #11
                      Hi Intodust, welcome!

                      You've gone thru so much to get to this point, at least you have the diagnosis now you can focus on how to address it.

                      DMD痴 are such a personal choice, I hope yours works out well for you.

                      Look forward to more of your posts.

                      Take care!

                      Comment


                        #12
                        Sorry I'm late to the welcome party!

                        I've noticed you posted on other topics and thought I would swing by here and say hi and welcome!

                        I'm sure it was a relief of sorts to get the diagnosis so you could begin treatment. How are you doing on Copaxone? When I was first diagnosed, these boards were invaluable as I searched which DMD I wanted to start on.

                        I hope all is going well, and again, welcome!

                        Comment


                          #13
                          Originally posted by hsmaldo View Post
                          Sorry I'm late to the welcome party!

                          I've noticed you posted on other topics and thought I would swing by here and say hi and welcome!

                          I'm sure it was a relief of sorts to get the diagnosis so you could begin treatment. How are you doing on Copaxone? When I was first diagnosed, these boards were invaluable as I searched which DMD I wanted to start on.

                          I hope all is going well, and again, welcome!
                          I had to stop taking Copaxone as I had a horrible reaction after my third injection. I'll be starting Tecfidera soon.
                          的知 pretty and tough, like a diamond. Or beef jerky in a ball gown. - Titus Andromedon

                          Comment


                            #14
                            Welcome, and sorry to welcome you to our exclusive club

                            Originally posted by IntoDust
                            I had to stop taking Copaxone as I had a horrible reaction after my third injection.
                            My guess (only a guess) is that they approved that simply because it's one of the cheaper DMD/DMTs.

                            FWIW, I was on copaxone for about a year. Giving myself shots was weird but it was no big deal (weirder still was the bizarre things that medicine does to your skin and yourself). What I didn't like was that I was giving myself shots every other day (but weekends off!) for a drug that has a significant percentage of people that it does absolutely nothing for.

                            As someone who is relatively newly diagnosed, my advice would be to take some time and learn about this disease that you have.

                            With that said, and just to give you something to think about, here's a video for newly diagnosed patients to watch. The video is from an MS-specializing neurologist in Ohio and is pretty mainstream in his views.

                            That doctor has a bunch of videos on many MS-related topics. Strongly recommended.

                            In particular, his views on the "escalation" model of treating MS and what is progression in MS are something you might be interested at this stage. Insurance companies love escalation and have invented rationales to "justify" this -- mainly because it's the most profitable for them. (Aside: My view is that private, for-profit health insurance companies are simply immoral, but I've lived in countries with real national health care.)

                            But again, aside from giving you "homework," welcome.
                            59M / RRMS / Dx1987 / Ocrevus

                            Comment

                            Working...
                            X