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  • Scared...

    Up until my diagnosis, there was no record of MS in my extended family, not even distant aunts. Now a very close family member (I shouldn't say who) has been having wonky symptoms recently, from cog fog to balance issues to eyesight trouble. We all know MS-like symptoms mimic dozens of other conditions and that often they are nothing to worry about... but I'm worried. Scared.

    MRIs and a battery of tests will be done in the coming weeks, which regardless of the result will be stressful. The only silver lining is that I've been there and can offer support. I prefer to remain the only member of my family to have this crappy disease. Ugh.
    Dave Bexfield

  • #2
    Fingers crossed for said family member. Hope its not too traumatizing or the start of a trend!
    I'm like you, the only one in my known family history with MS, and I too hope I am the only one who has it, and not because I want to be "special" lol but because i don't want anyone else to have to deal with their body hating them like mine does me


    • #3
      Excellent news. My sister (the PT and the one who helped me walk) just saw the doc and all of her tests were clean... except for a vitamin D deficiency--which totally explains all of her wonky symptoms.

      We all know MS can hide and it can take years to diagnose, but at least all signs today point to a false alarm. I'll sleep well tonight!
      Dave Bexfield


      • #4
        That is good news! And an easy fix, pop a pill every day and hopefully she's all better! If only taht worked for the rest of us lol. I'm glad she won't be joining our ranks though


        • #5
          Wow, really great news and a huge relief for all! Interesting that it is vitamin D deficiency and we were just discussing that the other day...



          • #6
            Low vitamin D?


            I'm still in limboland and still hoping that there is a different diagnosis than MS for me. Five episodes of numbness in the last five years, getting closer together and spreading further up my legs and arms.

            For Christmas, in addition to the numb legs and hands from Thanksgiving, I received a numb face and head instead of coal. Fortunately, these episodes usually only last a few months, so I'm toughing it out for now.

            As an active duty military member, it's tough to take a break when I need it so home time is my only down time. I love running, but lately the tripping has gotten worse and it takes longer to get back my energy afterwards, so the space between runs is longer too.

            Just got my referral for a 6month follow up MRI. The last one was clean except for one "flare" that they weren't too concerned with.

            The bloodwork came back with a 22 Vit D, so they've been supplementing it. The 50k didn't work so now I'm on the 100k plan.

            Trying to stay positive and hoping that it is some simple vitamin deficiency. Today the Doc asked, "has anyone ever mentioned multiple melanoma to you?"

            Staying positive here in Limboland


            • #7
              Yikes. Limbo sucks. And I realize that unfortunately my sis (whether she knows it or not) is in limbo, too. Vitamin D is an easy marker to point to when nothing else shows up. And your 22 is lowish, but not THAT low. Karen had a similar number.

              A clean brain and spine MRI and VEP are great, but when symptoms persist it can only get more frustrating to play what seems like an endless waiting game until something else pops up. How much Vitamin D are you taking? Did I read that right? 100,000 units? Wow. I'm taking 4K right now, but have heard of folks taking mega doses. Have you also seen an MS specialist?
              Dave Bexfield


              • #8
                Vitamin D for dinner


                Here's hoping that the Vitamin D can stave off the symptoms for both Karen and I. It helped give me back a little bit of energy, but not enough. I hope that the megadose works this time (100,000 units 1X a week), but i've got that feeling..

                I keep hoping for an answer, but the military medicine system is not the most responsive. It is free though, at least while I'm in, so I'm better off than so many folks out there.

                So far, I'm seeing my primary (who tells me to relax and not worry so much) and the endocrinologist tracking just the vitamin d after ruling benign three lumps in my neck (found on the first MRI). No military MS specialists without a diagnosis

                Saw three neurologists, one in 2008 after the right leg first went numb, two last summer when the numbness moved to both legs and my hands(the first moved while I was waiting for the MRI to be available). All said...don't know why your leg was numb...MRI's were clean.

                While I was waiting to be evaluated by the neurologist, one of the primary docs perscribed a course of steroids for what I thought might be a stress fracture. Turned out, I didn't have a stress fracture, but the numbness went away before I finished the course and only hung around a total of three weeks, when the last time it lasted for a few months. Not that I liked the way the steroids jack up your sleep

                Now have numb legs, numb hands and arms and a numb face. It's like I painted myself up in camo numbing cream, not a lot of rhyme or reason to the pattern.

                Saw a new doctor in the primary area yesterday. I wanted to make sure that she saw me at the worst, so I ran on the treadmill before the appointment. She seemed concerned most with the numb chin, but ordered another B12 and diabetes check (all normal in past) and a full spine, cervical, and head MRIs.

                I can't complain as they are doing the tests that i think will help find out the answer if there is one. Still, they look at you like you're crazy. I find myself poking at the numb spots to see if they're still there or if it is some trick of the mind.

                I get out there and run as much as I can when I can and let the chips fall where they may for the postworkout fatigue. I figure that you never know when you may have to slow down, so I should go while I can.

                Thanks for letting me ramble--open to any suggestions and appreciate all the tips in this forum for staying active.