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    Just diagnosed

    Hi, Just thought I would add myself to the newbie group. I've been seeing an MS neurologist for about 6 months and my most recent MRI confirmed the diagnosis. I go in to discuss medications on Thursday. Any advice on that and sharing the news with our children (5 kids ages 9-15) would be greatly appreciated!

    #2
    Hello

    Hi tennismom,
    I have no suggestions for telling kids (sorry), but I do have a question. How did it come about that you saw a MS Neuro for 6 months prior to dx? I only ask because I am at the start of this frightening journey where so far my tests have come back negative (including MRI head without contrast) but still have symptoms. I have a follow up apt with a neuro that I saw in the hospital (went there last week when I thought I may be having stroke), but he seems more concerned just to rule out stroke versus diagnosis of anything else. I tried to contact a different neuro but that one wanted to review my medical records before determining if I needed an appointment... which I thought was odd. Did you have trouble getting an appointment with MS specialist?

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      #3
      I had a brain MRI 8 months ago with greater than 9 spots, at least 2 of which were highly suggestive of MS (black holes). Since then, they have also found 2 spots on my cervical spine.

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        #4
        I'm also recently diagnosed with children

        I was diagnosed after a sudden vertigo attack near Thanksgiving led the doctors to do MRI (3 days in the hospital recovering). I've had several tests since to confirm diagnosis. I have few visible symptoms at this point, and I've explained to the children that I have no idea what's coming up. It's possible I could end up in the hospital again or I may have few symptoms for a long time.

        I tend to manage my diagnosis with humor (at least to myself), but the children quickly told me they didn't find it amusing. I mostly manage to keep things to myself, but occasionally they see something fishy (I dropped my corn on the cob in the middle of dinner... my left hand can't be trusted).

        I think it scares them what could be coming, and they'd rather not discuss the possible future, so I stay focused on today and try to "live in the moment."

        But back to humor. I just started Tecfidera and after the first dose had a flushing reaction... I told my son that my face was totally red except for a 1 inch space around my hairline, which he found fascinating. He wanted a picture if it happened again. I try to keep it light around the house and keep the day to day numbness and such to myself.

        MS is hard for me to understand, so I just explained to them that I don't know what's going to happen either, but if something happens that we'll manage it then.

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          #5
          Sorry about your diagnosis. The list of meds to choose from can be daunting. I chose copaxone first since fewer side effects and I needed to be able to work full time in physically demanding job so didn't want to have the flu like symptoms the others may cause. After a year and half though I had so many injection site reactions I had to switch

          Now I'm on betaseron (extavia). Initially some flu symptoms but good now and only a shot every other day instead of daily. Your doctor should give you literature and discuss all your options with you.

          My children were 2-15 when I got my diagnosis. I told the older ones because I was in and out of hospital a few times at first. I focused on the positive(?) and don't really talk too much about it. That was 18 years ago. I still try to look my "best" for them and don't bring up MS unless they do. Don't want them worrying about me.

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            #6
            hi Mark. take an asprin a half houre before the Tecfidera.

            Originally posted by mack1z View Post
            I was diagnosed after a sudden vertigo attack near Thanksgiving led the doctors to do MRI (3 days in the hospital recovering). I've had several tests since to confirm diagnosis. I have few visible symptoms at this point, and I've explained to the children that I have no idea what's coming up. It's possible I could end up in the hospital again or I may have few symptoms for a long time.

            I tend to manage my diagnosis with humor (at least to myself), but the children quickly told me they didn't find it amusing. I mostly manage to keep things to myself, but occasionally they see something fishy (I dropped my corn on the cob in the middle of dinner... my left hand can't be trusted).

            I think it scares them what could be coming, and they'd rather not discuss the possible future, so I stay focused on today and try to "live in the moment."

            But back to humor. I just started Tecfidera and after the first dose had a flushing reaction... I told my son that my face was totally red except for a 1 inch space around my hairline, which he found fascinating. He wanted a picture if it happened again. I try to keep it light around the house and keep the day to day numbness and such to myself.

            MS is hard for me to understand, so I just explained to them that I don't know what's going to happen either, but if something happens that we'll manage it then.

            Comment

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