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    New here, and undergoing tests to confirm dx

    Hello everybody, my name is Nicole. I am 23 years old. I am currently a nurse and going to school to continue my education to get my BSN. Up until now I considered myself to be strong enough to deal with anything. I've participated in MS walks and donated for a few years now as my best friend's mother has MS, however, I never thought I would have it too. I basically came on here because no matter how strong I try to portray myself to my family, I feel like I'm deteriorating inside and I don't want to burden them with these feelings and make them worry more.

    My story began in 2007 when I began having severe muscle spasms in my neck and upper back. I went to doctor after doctor for 4 years and they all told my I just had muscle spasms and it was nothing to worry about. I started to think I was crazy until I lost all function of my left arm. I had an MRI which revealed a herniated disc in my neck that was compressing my spinal cord and left nerve root. I had surgery one week later which seemed to get rid of all my symptoms. I had the surgery in January 2012 and approximately 6 months after surgery I began having different symptoms. I've had daily headaches for about 5 years now which I considered to be "my normal", yeah I know, that's ridiculous, but I thought it had to do with stress or my neck, but recently my headaches changed. I started waking up with the headaches and they started to feel throbbing in nature. I get occasional spontaneous vomiting. I have had blurred vision in my left eye for approximately one year and saw an eye doctor in november 2012 who stated that everything in my eye was fine, but suggested I see a neurologist.

    I made an appointment with my PCP and neuro surgeon who ruled out lyme disease, lupus, RA, and multiple other diseases. They then thought that I maybe had a brain tumor and did a CT that showed nothing. Then they thought I was rejecting my spinal fusion, but ruled that out as well. In november I collected all of my medical records because I was thinking about changing PCP's, and good thing I got my medical records, because I found that my WBC had been elevated between 16 and 21 for 2 years, and not one doctor bothered to notify me.

    I was then referred to an oncologist to have leukemia ruled out, which was ruled out. He then suggested I see a good neurologist other than my surgeon, so that's what I did. This neurologist stated that I should have an MRI to rule out MS. I had the MRI and got the report which stated "Acute MS plaque, possible infarcts, and possible neoplasm". I quickly called my neurologist who was furious with me for getting my medical records and stated, "There is nothing wrong with you, this MRI is completely normal, you need to calm down".

    Needless to say I got a 2nd opinion 3 weeks ago and I really like this new neuro. He is 99% sure I have MS because I have over 10 lesions on my brain, already in every lobe and he stated I was losing my vision because one of the lesions is on my right occipital lobe. He ordered more tests including EP tests and LP. I had the LP last week which was awful, and CSF is showing high lymphocytes but cultures are negative for infection. IG tests are still pending, but I am rapidly deteriorating the past 2 weeks. I'm trying to stay strong, but all of these tests are wearing me out!

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    My dear Nicole~ You sure have been through a lot in your short life, haven't you? And going to school too! I'm so sorry that it hasn't been easy for you, but want to send out a warm welcome to MSWorld. I'm really happy to hear that you finally found a good neuro!

    There are so many caring, helpful and informative people here on the boards and we understand the diagnostic headache that so many of us have had to deal with.

    Come back to share, because we do understand. And if you ever want to go to visit our chat room, here are the schedules http://msworld.org/chatroom_info

    We're all in this together. Hang in there and try to stay strong
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Nicole you came to the right place! I have spent hours reading here . I hope it will help you as much as it has me
      I have a close family but I felt the same way I think it was
      because I had to rely on them for some help .

      I most likely will never meet anyone here in person but There
      stories willingness to share is priceless! So spend some time
      reading some posts here !

      GOOD LUCK
      Dave

      ( DX 07/2010 REBIF 11/2010 - 07/2016)
      (Copaxone 01/2017 to 03/2018)
      (Tecfidera 03/2018 to present )

      Comment


        #4
        Wow Nicole, you have a lot going on at one time! I am glad you have a good neurologist now. Hopefully they can get everything sorted out soon and you can get diagnosed and on a treatment regimen.

        Glad you are here!

        Lisa
        Moderation Team
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Thank you guys, the support on this site is amazing!!

          Comment


            #6
            CSF is showing high lymphocytes but cultures are negative for infection
            I found that my WBC had been elevated between 16 and 21 for 2 years
            What your low WBC or high lymphocytes means I don't know but it is not indicative of MS.

            A Lumbar Puncture can be used to diagnose several different conditions/illnesses. It is Oligoclonal Banding (o-bands)/high protiein which is considered for MS.

            http://www.nlm.nih.gov/medlineplus/e...cle/003631.htm

            http://www.nlm.nih.gov/medlineplus/e...cle/003428.htm

            Hopefully with more testing your neuro can find an answer to your sysmptoms as well as the cause for your lesions.

            Best wishes!
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment


              #7
              Hi Nicole,

              I was just going to say the same thing as Snoopy. An elevated WBC in the CSF or pleocytosis is not indicative of MS . I was found to have a pleocytosis with my LP and it is one the main things that convinced my neurologists that we were dealing with a MS mimic and not MS.

              Here is a link to a NIH site that discusses CSF and the infectious and non-infectious causes of pleocytosis:
              http://www.ncbi.nlm.nih.gov/books/NBK398/

              An elevated WBC for two years on your CBC is not something seen in MS either. There are many disease that can cause brain lesions bedsides MS. I would just be sure that you are being worked up properly and not being given the MS diagnosis because it is the easy diagnosis.

              It would be in your best interest to go to a large teaching hospital for yet another opinion. I happen to have two world renowned teaching hospitals near me and have been to both. It is great that you are a nurse since it will help you advocate for yourself. Good luck and I hope you get answers soon. Be well.

              Comment


                #8
                Nicole, you've had a tough road but it sounds like your on the right track now. Do you best to relax during the diagnostic process. Take care of you self Dale
                Dale in NC, dx'ed 2000, now SPMS

                Comment


                  #9
                  Originally posted by SNOOPY View Post
                  What your low WBC
                  My mistake, nicole1389. You stated you had an elevated white blood count not "low".

                  This still would not be indicative of MS. There is no blood test that will indicate MS and no blood test as part of the diagnostic criteria for MS. However, there are different causes for high WBC:

                  http://www.mayoclinic.com/health/hig...SECTION=causes
                  Diagnosed 1984
                  “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                  Comment

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