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NEW TO ALL THIS, HELP!

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    NEW TO ALL THIS, HELP!

    Hey, I have been a lurker on this site since way back in January 2016 when I first started having symptoms. It is now November and I finally have a diagnosis of RRMS as of 11/22/16. Currently waiting on Tricare to approve IV infusions of Rituxan so I can begin treatment.
    Apparently the last piece of the puzzle was a Nerou/Psych eval that revealed several deficits in short term memory, processing speed, learning and fine motor skill.

    The Dr who preformed the test is already recommending I quit work as a Correctional Officer and seek disability due to the results. He conferred with my MS specialist and she agrees.

    I had a few questions for you experienced MSers out there.

    Is Rituxan a common first treatment option or does it mean my RRMS is more advanced?

    Given that I am only 27 with a wife and daughter going a Disability seems drastic. I have been struggling greatly at work but still. Anyone else went on disability soon after their DX?

    What are some resources that helped you early on?

    I have a PCP and a MS specialist(whom is a 3 hour drive away) Do I need a regular Neurologist closer to home as well?

    Anything you wish you had known soon after dx? Tips?

    I am currently in the GA National Guard as well so any NG veterans input would be valuable as well in regard to my Military career.

    I had more questions but my memory fails me right now. (Damn MS!) I feel really overwhelmed with all the looming decisions right now. Any help and or guidance would be much appreciated right now.

    #2
    HI

    Hi,

    Welcome to MSworld. I am sorry for the reason. But, this is a resourceful website.

    I noticed that you posted, also, in the Rituxin thread, also. That is a good place to get that answer. I did not notice whether you got an answer there, yet. Another good resource is to call your neuro's office and see if the nurse in the office can help answer that question. Or, schedule another appointment to have that discussion. But, I think that the nurse should be able to answer that question. Also, a good call to the neuro psych office can also answer some of your questions, too. That is their duty to answer some of your questions, as well as supplementing what the experienced MS ers can.

    Another resource regarding medications is listed under the stickies under the medication thread. But, here is the link for easy find: http://www.msworld.org/forum/showthr...Drug-Selection .

    In my opinion, but, I am not an neuro, and I am not you. It seems a bit dramatic to start with that medication. But, you have to decide if you want to be that aggressive at the beginning. Some people do. Some people do not.

    The military questions can be most likely answered under the military thread if you want to post there.

    And, when more questions come in. And, they will. Post them then. Start a new thread, unless it is a spin off from these original questions.

    Please feel free to join us in chat on this website, also. There is scheduled 8 PM eastern. But, there is someone there at various times throughout the day. I figure that 8 PM eastern is probably busy with a family.

    Oh, and regards to disability. In order to get disability you would have to prove that you are not employable at any job. I do not know whether the neuro pscyh doctor can answer that. Like I can not be employed full time because I need frequent and on the spot trips to the bathroom. I also need to not have footwear on or sandles on because of neuropathy. So, you would have to have to prove that you can not be employed at all at a fairly equivalent job. I can not explain it further from your perspective.

    Just because you file for disability now, does not mean that you can never be employed again. Every state has a bureau of vocational rehab that can help you find what will work for you and often pays for training that you may need.

    Good luck.
    God Bless and have a good day, Mary

    Comment


      #3
      1.
      Originally posted by TheFamilyMan View Post
      Is Rituxan a common first treatment option or does it mean my RRMS is more advanced?
      I don't know. When I was first diagnosed, there were only 4 meds available and they were all injectables. So, I started on Betaseron in 2003, switched to Copaxone 20in 2008 and to Copaxone 40 in 2015.

      2.
      Originally posted by TheFamilyMan View Post
      Given that I am only 27 with a wife and daughter going a Disability seems drastic. I have been struggling greatly at work but still. Anyone else went on disability soon after their DX?
      If both your neuro and PCP are recommending disability, it's likely not too soon. I went on disability 6 years after my dx, and was also reluctant. But, in retrospect, I lost three jobs in those 6 years, due to MS, and I was struggling to stay awake, and not performing job duties at a level comparable to what I'd been able to prior to MS. Although I grieved losing my career for quite awhile, I believe it was the best decision for me. There are ways, other than a career, to make your life fulfilling, if you need to do this.

      You can also work part time while on disability, if you stay below a certain income level. Or, if you determine that you are able, there are vocational rehabilitation programs to help you get back, even full time, into employment, if you decide that's in your best interests. But, it gives you more options.

      3.
      Originally posted by TheFamilyMan View Post
      What are some resources that helped you early on?
      I wish I'd known about more resources. Church and friends and family helped me.

      4.
      Originally posted by TheFamilyMan View Post
      I have a PCP and a MS specialist(whom is a 3 hour drive away) Do I need a regular Neurologist closer to home as well?
      Like you, I have a PCP in my home town. I see him once a year, and if anything comes up in between. I also have an MS specialist who is a 3 hour drive away. I see her twice a year. I can email her nurse when there is an MS problem and she can rx steroids, when needed, over the phone.

      Prior to having an MS Specialist, I had a neuro about 45 minutes away. He was supportive of finding a specialist, and said that I no longer needed to see him, as they would be providing duplicate services.

      5.
      Originally posted by TheFamilyMan View Post
      Anything you wish you had known soon after dx? Tips?
      www.mymsaa.org and www.msfocus.org are a couple of organizations that can offer financial assistance with various MS-related expenses. If you call your local National Multiple Sclerosis Society, they can likely give you more information regarding resources.

      A longer list of resources can be found here:
      http://www.msworld.org/forum/showthr...1361-Resources
      ~ 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


        #4
        Going on disability does seem drastic, in my personal opinion. There is much literature regarding MS and work. Go to the NMSS website and read some things.

        If you want to work and you can find ways to compensate, do it. Work for as long as you can. There are occupational doctors as well as speech and language pathologists who can help you with that. Go to them and get help.

        You've got enough to worry about with a diagnosis and a family. Try going to those doctors and see what works for you and your family.

        Best wishes to you

        Comment


          #5
          Take it Slow

          /B]I had more questions but my memory fails me right now. (Damn MS!) I feel really overwhelmed with all the looming decisions right now. Any help and or guidance would be much appreciated right now.[/QUOTE]

          I am glad that you found this site as it has helped me immensely. There ARE lots of decisions for you right now and lots of stress so take it one step at a time. Don't try to solve all the issues at once. Some will be more pressing than others so take those first. Be kind to yourself. And remember, we are always here for support when you need a word of encouragement.

          Comment


            #6
            Originally posted by TheFamilyMan View Post

            I am currently in the GA National Guard as well so any NG veterans input would be valuable as well in regard to my Military career.
            Were you ever activated, time in the Gulf?
            The future depends on what you do today.- Gandhi

            Comment

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