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    MS Diagnosis and no lesions
    avatar
    msmeg73 posted:
    Hello Everyone, this is my first time reaching out for help in an online community. One of my older sisters and an Aunt have MS. It took awhile for my diagnosis, I only had one very small white matter spot on my brain.....I saw an MS specialist and wasn't diagnosed, it was about a year and a half of still having all the symptoms related to MS....I hadn't had insurance....when I went back with the visible symptoms we did a spinal tap which was indicative of MS. I was diagnosed and admitted to hospital the same day....I just happened to have a neighbor at the time whose daughter had MS, when she was visiting my neighbor got us together, she also didn't have any lesions on her brain or spine but was diagnosed with a spinal tap as well and told me how her daughter had MS as well and had lots of lesions on her spine and brain MRI....I have been on shots for two years in September, my new primary believes it is MS as well but the neurologist I went to says she didn't see any proof of ms from my spinal tap (she was also reading it wrong and read the reference range indicating no bands instead of my CSFluid and see note going into detail of the findings, she referred me to see an MS Specialist dec3,2015 but the office never got the referral over until end of April 2016 so my specialist appointment isn't until the middle of June....in the meantime she will not call in my disease modifying shots until she hears about my appt. with the specialist and that I have MS...I called my neurologists office in Florida and he stands by his diagnosis and even went over my case with another MS expert...when I called I found out she never even asked for my records from this doctor...when I called the specialist pharmacist they agreed with what I was told by my Florida neurologist, that I wouldn't be hurting myself by taking the shots but without them I would be putting myself at risk, it truly scares me...I only have a week left of shots....my only alternative and I live with my parents now on a very low soc security income is to fly down to Florida to my doctor there and get a RX called in for my medication....I was told if I was me to report this neurologist to the American Medical Board for abruptly taking me off the shots, never requesting my records and never calling my Florida neurologist about me....also I read that 95% of spinal taps with the oligicolonal sp? Bands are correct for MS and 5% of MS patients show no lesions but to start treatment which could delay or stop lesions from forming...I'm just so stressed about it and the move and was wondering what anyone thought and if anyone is like me with no lesions on brain or spine but diagnosed by a spinal tap/ lumbar puncture? I'm sorry so long and am so appreciative of any support or answers,information...Thank You so much, Meg
     
    avatar
    hackwriter responded:
    Hi Meg,

    I'm so sorry you went through such a stressful time after the move. The new neuro didn't handle your case very well, I wouldn't see her again if I were you.

    It isn't unheard of to diagnose MS with a lumbar puncture in the absence of brain and spine lesions, but it isn't the usual protocol. Lesions will eventually appear if you have relapsing-remitting MS.

    Please don't worry if you go without your shots for a short while, it won't harm you or bring on a relapse. Do bring up your concern about it, however, during your June appt. with the MS specialist. It's important to advocate for yourself and ask questions. I hope your appt. goes smoothly, please do come back and give us an update, won't you?

    Try not to worry, Meg, you'll be okay no matter what. It's scary at first, and very troubling when we first discover that doctors are not all alike in their knowledge and approach to diagnosing and treating MS. Learn all you can about the disease and its treatments, ask questions of patients on online MS forums like this one, and look at your doctors as consultants. As trained as they are, they didn't bring the stone tablets down from the mountain; as the more experienced patients will tell you, we can teach them as well if we become excellent communicators of our own disease symptoms and become well-informed by reading and consulting with other patients.

    Looking forward to hearing from you again soon, Meg. Thanks for telling us your story! I hope you'll feel better for doing so.

    Kim
     
    avatar
    Stephanie Butler, RN responded:
    Hello Meg,

    I do agree that it is necessary for you to see an MS specialist because without lesions your diagnosis is harder to make. Other conditions can cause o-bands to show up in the CSF, and in order for the test to be accurate they also need to measure how many o-bands are in the blood and compare the two numbers. Do you know if they did that?

    It is also possible that you have Clinically Isolated Syndrome (CIS), in which case starting injections like you did could help delay the development of MS but again, I do think your case needs to be evaluated by an expert before proceeding.

    I hope you get a more definitive answer soon, and if we can be of any help please don't hesitate to reach out!

    Stephanie


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