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Waiting on Diagnosis

I have been trying to get a diagnosis for 5 months. I spent a few months with a neurologist that thought I had MS, I’ve had so much blood work, six MRIs spinal tap, EMG testing, vestibular testing, and the only thing that has come back positive or abnormal is the ANA and the DNA DS antibody. Spinal tap was also indicative of a systemic condition. I go back to the rheumatologist on the 25th. I have vertigo, headaches, leg weakness, stiffness and coordination problems in my hand and tingling feet. Also sometimes my legs feel like they are not even there. Anyone have any similar symptoms?

  1. , that's a long time to wait without answers. It seems most people have the best luck with a rheumatologist, so it is good you have a appointment. You started making a good list of symptoms here, I know some have written down (like a log or journal) their symptoms and that can help with that appointment. I know it's not your first rheumatologist appointment, but some things in this article have been helpful to others - https://lupus.net/living/tips-rheumatologist-visit - Liz (lupus.net Team Member)

    1. Sadly I can relate to many of those symptoms. It just sucks because lupus, and other autoimmune issues, take forever to diagnosis. I had lots of symptoms starting at 16 after having mono and I wasn’t diagnosed for ten years. Because no one took the time to put all the separate symptoms together. One thing I highly recommend is to journal/track your daily symptoms. Keep track of the symptoms you are feeling, along with your pain level and where the pain is. As well as what you have tried to improve your pain/symptoms and how it worked. Some people will go as far as tracking their diet as well but may not be necessary. Tracking/journaling will help you and your provider see if there are an trends. If you already do this, just disregard all of this. Please let us know going forward if there is anything we can do to help you!! Big hugs.

      Amber (lupus.net team moderator)

      1. Thank you so much. I am tracking my symptoms. It is so frustrating because my symptoms are more neurological, so they are quick to dismiss me and want me to see a neurologist, which I did for 3 months! Thanks again for the support!

        1. You can always request a second opinion if you are feeling they are brushing you off! Just make sure when you are at your appt that you make it clear that you have neurologist and they can’t help you. That you need them to do something. Sometimes we have to stand up for ourselves and make a statement. Don’t be rude obviously but just make it known what’s going on. I truly hope you can get some help. Also you might looking into support groups on Facebook. I have benefited so much from being in a group of people who know and understand what is going on. And with people who I can be totally open with and mot have to worry about the judging me. Please reach out if we can help!! Big hugs.

          Amber (lupus.net team moderator)

        2. thank you! I am seeing a second neurologist in June. I also sent all my test to Mayo Clinic and the neurologist department declined my request since I had a thorough neuro work-up and no abnormal results. It is looking more like autoimmune effecting my nervous system. I will definitely look into the fb groups. Thanks again.

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