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SAW MY NEW NEURO WITH A PROBLEM FOR FIRST TIME TODAY!!

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    SAW MY NEW NEURO WITH A PROBLEM FOR FIRST TIME TODAY!!

    After spending about 45 minutes with a Resident and performing a multitude of tests I finally saw my Neuro and heard the words none us are particularly wild of hearing. " Your are having an exacerbation". She scheduled me for three rounds of Solumedrol for next week. Then for a MRI on Friday.

    Now the VA will not do contrast without blood work so I had to go do that.

    I asked her straight out how she arrived at the DX of an exacerbation. She told me your clinical a were not what we like to see. When she had me close my eyes and stand still and could not stand straight up and nearly fell a couple of times. She and the resident were there to stop me though.

    As if that weren't bad enough I have to drive to New Orleans Thuesday, Wednesday and Thursday for my infusions and then again on Friday for my MRI. That's a little over a hour ride from where I live.

    Definitely not what I had hoped for. But you live with it and move on.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

    #2
    Rough news, feel better.
    Can you get someone to go with you? That's a long way to go alone for those infusions.
    hugs
    "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
    Verin Mathwin, The Wheel of Time by Robert Jordan

    Comment


      #3
      Originally posted by Waydwnsouth1 View Post
      As if that weren't bad enough I have to drive to New Orleans Thuesday, Wednesday and Thursday for my infusions and then again on Friday for my MRI. That's a little over a hour ride from where I live.
      You've said several times that you absolutely can't have high-dose steroids. When you did, you ended up in the hospital with breathing problems. So can't. No way, no how will you ever have steroids again. And you deflected any suggestion that you might be able to have steroids if administered appropriately.

      So based on that, how realistic do you think it is that you're going to be able to be whacked with steroids and still drive yourself back and forth to New Orleans three days in a row, and then a fourth day when you're completely loaded with steroids?

      And considering how much trouble you've had with your lungs lately, added to the knowledge of how much fluid retention and bloating steroids cause, what are your plans for dealing with fluid building up in your lungs?

      And if you're already having trouble walking, what are your plans for getting around when you're bloated and achy? And you're having trouble breathing?

      This probably isn't what you want to hear, but it doesn't sound like you're prepared for dealing with the side effects that are to be expected from steroids.

      At a minimum, is it possible for you to stay in a motel near the medical center for the days you need to be there so you're right next to medical care if you need it, and you won't be exhausted from trying to drive back and forth?

      Comment


        #4
        two cents on steroids

        When I needed high dose steroids for my optic neuritis, i was given 2 options:

        A. 3 days of infusions (1 per day)

        B. 3 days of being on the equivalent amount of steroid taken orally each morning. I took 25 pills each morning. Each pill was 50mg.

        I did the pills. Tedious to take, but preferable to the infusion for me. Rather than driving an hour each way, I'd look into if that is an option for you.

        Also, I don't know all of your issues with steroids affecting your health that jreagan70 refers to in the response. But, good luck and best wishes to you.

        A research article related to taking oral steroid for relapses:

        http://www.ncbi.nlm.nih.gov/pubmed/22547517
        RRMS Dx: 3/23/15
        (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
        Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

        Comment


          #5
          High-dose oral steroids are a fine option for people who 1) have no history of problems with high-dose steroids, 2) don't need to be monitored, 3) are prepared to deal with the side effects, and 4) are located near medical care if a problem should arise.

          I fit that category and have been taking oral steroids instead of getting IVs for about the last 5 years.

          But, Waydwnsouth1, based on everything you've posted, you definitely don't meet the first 3 of those criteria, and the 4th may be difficult for you if you'd like to have your prescribing doctor nearby and have the VA cover the act and cost of caring for you if (those not-unexpected) side effects develop.

          Other than staying nearby the VA medical center while you have your 4-day adventure, the only other option I can think of that might be appropriate to your situation is to have a home-health nurse come to your house everyday to administer your IVs and monitor you while s/he's there -- IF the VA can arrange that. But that still leaves the issue of who's going to be available to you the other 23 hours of the day.

          There aren't any shortcuts if you'd like to be treated with high-dose steroids.

          Comment


            #6
            Your situation sounds like you meet the criteria to do the IVSM inpatient. I was getting my treatment at home through a home health nurse. As a result, I went so many days without sleep that I landed in the hospital for 10 days anyway.

            My doctor realized that I needed a high dose of IV Ativan to combat the steroids and let me sleep. So from then on it was inpatient.

            If you are dealing with the VA it may be more complicated. At the very least, you need to find someone to drive you.

            Comment


              #7
              Thank you, palmtree, for addressing head-on the inpatient issue I had been skating around.

              Back in the old days it was standard procedure to hospitalize every patient for a high-dose IVSM series. My first treatment with IVSM was done for 3 days in the hospital. I was in otherwise good health and no risk factors. Only after it was proved that I had no problems with it that I was allowed to have my subsequent treatments done outpatient.

              I didn't come right out with hospitalization because I appreciate how complicated it might be making arrangements with the VA and because there's no sugar-coated way to bring up why all of this wasn't already discussed with the neuro and decided on at the time.

              And that's why, in my earlier post I said "at a minimum" is it possible to stay for the duration somewhere nearby the medical center. The chances of needing hospitalization are fairly high, and it's going to be much easier to pull that off if the VA hospital is nearby. But easier yet is to be proactive and just have the 3 days of IVSM done inpatient from the get-go.

              Comment


                #8
                Hi Waydwnsouth,

                Sorry to hear you are having an exacerbation.

                I agree with being treated with IVSM as an inpatient. With your complicated history, that is really the only way you should get them. I would hope even the VA would agree with that!

                Best of luck.
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

                Comment


                  #9
                  Maybe of you get the steroids and you know you are going to have a bad reaction, you can just sit at the 's in the prescription refill area or in your car or whatever until it happens and then go to the emergency room. They'll pretty much have to admit you.

                  Also I'm here in baltimore and the va has a ms center of excellence with a built in social worker for all who are diagnosed. Of you have something like that, they should be able to provide you with some transportation assistance.
                  You can't stop washing your feet just because you're afraid you'll fall in the shower.

                  Comment


                    #10
                    Thank you all for pointing out some great alternatives. I have already e-mailed my Neurologist about other options. My DW is extremely concerned as she should be.

                    I did bring up my concerns to my Neurologist when she recommended the steroids. She told I would be monitored closely while taking them. But after reading some of the replies I am inclined to e-mail her again. As a matter of fact I am going to do that right now.

                    I have to be honest, I never thought about driving driving back after the infusion. So now I will try and find an alternative.
                    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

                    It's hard to beat a person that never gives up.
                    Babe Ruth

                    Comment


                      #11
                      I really appreciate everyone's reply and concern. As my Neuronwas giving me all the information as to what we were going to do I was having a hard time processing it all. I tried repeating it back to her but she had to correct me several times. I did e-mail her and I will her in the morning before doing anything. With the VA she has to visit with the patient and sign a consent form before they will treat you. So hopefully I can get all this straight tomorrow.

                      The last time I had IVSM I went straight to work after finishing and worked all day. So hopefully we can work this out. I'll let you all know.
                      Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

                      It's hard to beat a person that never gives up.
                      Babe Ruth

                      Comment

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