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    Just Starting

    Hello everyone!

    My name is Julie. Here is my story. It's kinda long long, but I'll start from the beginning.

    Last July, I started having periods of dizziness. Sometimes I would even pass out sometimes. People could tell that I was having these "spells" because I looked like a curtain was going down over my face and I wouldn't really respond to them. I didn't make sense when people tried to talk to me.

    I went to see my doctor in the fall. She worked up my heart (which was fine) and did some blood work (which was fine). She also had me check my BS which turned out to be low at times.

    So, even though my labs were OK at this point, she was questioning if I was possibly in pre-diabetic mode. I had a CT scan earlier in the year for an atypical migraine which was negative; so we didn't pursue further imaging. Just focused on keeping BS under control.

    In March, I was shopping for my BF birthday present. I don't remember much except I obviously passed out again. Clothing rack 1 Julie 0. I suffered a concussion and have has horrible migraine/headaches since.

    Being the noncompliment person that I am....I didn't want any brain imaging because I didn't think that it would really make a difference. Well, 7 weeks later; I'm still have HORRIBLE headaches that are keeping me from work.

    So, I have finally a MRI on Monday. First no contrast. And they end up using contrast during the imaging. My doctor calls me with the good news of "Hey, you don't have a hemorhage, but your scan lit up like a Christmas tree for MS."

    OK, she didn't say quite it like that.

    So, I'm going to see a MS neurologist in 2 weeks. I've been reseaching some of the sypmtoms and it's a little eye-opening for me. I don't know if I'm just plain dumb or in denial or didn't put 2 and 2 together, but here are some of my S/S:

    1. Tingling in my hands and feet
    2. Restless leg sydrome at night (this has been HORRIBLE for me)
    3. MS hug (I actually went to the ER once because I thought I was having a heart attack. After a workup, they said it was just musculature. I still have episodes about once a month).
    4. Dizziness
    5. I actually have trouble thinking sometimes. It's hard to explain.
    6. Fatigue
    7. Headaches
    8. "Neurological" problems in my 20's and 30's. I went to see a neurologist because I was having pain in my feet and hands and they said that I had a pinched nerve. But each time, the doctor said that it was kinda of a weird place to have a pinched nerve.
    9. Abnormal MRI with contrast.

    I'm really not too sure what to think or what to do. But here I am.

    #2
    hi

    It's really good to see that you're at least on top of this. I'm really sorry that you are having to go through this. All I can really tell you is that it's so different for everyone. MS that is. Your symptoms range from such a wide spectrum of things so I really can't say. That and I am for sure no doctor I had numbness in feet, lets hands...it progressed up my body. I never had dizzy spells though, but like I said it's different for everyone. Also, the placement of the lesions means something so I really am hoping they didn't tell you MS right off the bad just because you have lesions because again, lesions could mean a number of things.

    I was "lucky" enough to have dawson's fingers and lesions in the "right" areas and new relapse that helped him diagnose me and I also had lhermitte's due to my spinal lesions and when that first popped up, they didn't think it was MS yet. Due to my 7 new brain lesions and one spinal lesion and new relapse at the time...he diagnosed me and confirmed it.

    I wish I could help more, but hang in there please. It's tought. I understand.

    Comment


      #3
      I kind of hate to say this, but welcome. When I started this stuff (15+ years ago) I didn't have passing out spells, but I did have vertigo to the point of falling several times. Your list of symptoms looks similar as well. Except for the MS Hug I've got them all as well. You've taken the right first steps. Hopefully you will have a good relationship with your neuro (this is important) and some meds and/or therapies can be prescribed to help with your symptoms.

      There are a lot of people on this forum with a wide range of experiences. Take advantage of that (I have) and good luck.

      Comment


        #4
        Thanks everyone!

        I have been lurking on several boards and I really liked this one.

        I don't know any specifics about my MRI, althought than my internist said it was highly suspicious for MS. So, I'm use that I'll find out more when I see my neurologist on June 8th.

        That gives me plently of time to surf the web and sufficicently scare myself. LOL!

        Comment


          #5
          no google!

          Denlie! Don't google! lol whatever you do, just don't because you'll only end up scaring yourself more. Like I was saying, so many things can cause your symptoms, there are just too many diseases out there to scare yourself into thinking you may have. I know it's hard because I used to google and just sit there and sob while I read through the possibilities! No bueno!

          Comment


            #6
            Sorry to hear of your dx nobody wants to go through this. I am not dx yet but when dr. said possible MS I started learning about it I didn't know anything about it I only knew that MS would eventually put you in a wheel chair. That was all, but that scared me more!

            Once I started googling it and finding videos of people who have gone through it it helped. There are a number of good videos that help one is Lauren Parrott. And a number of others. I hope this isn't bad to post peoples videos, I don't want to offend anyone. Helped me a lot. I have the same sx what she is going through but I am just going through the very long process of being dx. Then I came across these boards which has really helped me calm down and feel much better that I am not the only one. She has a web page and you can go through all her videos. Good luck and hugs.
            Not dx yet, had symptoms now for 4 years. First Neuro App was August 5,10.MRI DEC 8,2010 Finally done. Original MRI was for July 4,2011

            Comment


              #7
              I've been having lots of ups and downs today. But mostly I'm happy to know that I'm not crazy and that my symptoms have not been in my head and I don't have to hide them anymore.

              I'm going to make this a journey about LIFE for me.

              Comment


                #8
                Hello Julie

                Just want to say welcome and offer support to you

                Hope you can benefit from everything MS World has to offer - information, experiences of others living with MS, and support

                Take care,
                KoKo
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Originally posted by zuzu20 View Post
                  Sorry to hear of your dx nobody wants to go through this. I am not dx yet but when dr. said possible MS I started learning about it I didn't know anything about it I only knew that MS would eventually put you in a wheel chair. That was all, but that scared me more!

                  Once I started googling it and finding videos of people who have gone through it it helped. There are a number of good videos that help one is Lauren Parrott. And a number of others. I hope this isn't bad to post peoples videos, I don't want to offend anyone. Helped me a lot. I have the same sx what she is going through but I am just going through the very long process of being dx. Then I came across these boards which has really helped me calm down and feel much better that I am not the only one. She has a web page and you can go through all her videos. Good luck and hugs.
                  Lauren Parrott rocks! Kwazykelly has a few good videos on their, too. I have to agree with seeing some of the "success" stories from other people... It gave me hope when I was supa low.
                  [insert motivational quote here]

                  DX of Lyme Disease May 2010/Still under investigation for body madness

                  Comment


                    #10
                    Hello Denlie and HUGS to you ~!

                    Sorry for all you are going through.

                    Glad you are seeing a neuro soon..but what was concerned about what your "passing out" and your friends seeing the "curtain go down" not making sense to them. ALL sounds like possible I said "possible" seizure activity. That often gets missed as heart or dismissed entirely.

                    So when you see your neuro TELL him about this and ASK your friends/family to watch for signs when it looks like "you are not there."

                    I know, I guess I have seizures and finally got it checked out..then dismissed as no..the now definitely yes.

                    Hope you get the answers you need.

                    Come here and vent, ask and we'll support you ok?

                    Warmly, Jan
                    I believe in miracles~!
                    2004 Benign MS 2008 NOT MS
                    Finally DX: RR MS 02.24.10

                    Comment

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