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Brand new. Looking for advice.

I am a 53 year old woman with chronic fatigue/fibromyalgia. I have experienced pretty severe flares since my 20s that have left me bedridden at times many days. Have been tested ad nauseum for autoimmune/connective tissue disease, but i was so frustrated with results and meds, I have not been to a dr in a long time. Never tested for MS. I think it is time. I really loathe going, but my symptoms have gotten progressively worse: stabbing nerve pain, joint pain, muscle weakness, extreme fatigue, bladder urgency and cannot hold my bladder, very annoyimg itchiness. My concern is i am going to go through all the tests and not have a dx. I am getting too old to waste time and I do not have energy to leave the house much. I live in a semirural area and it is not easy to get seen and find reputable doctors. Any advice on getting a diagnosis and treatment quickly? I seriously do not want to try, but doing this for my family too. Thanks for any help!

  1. If you do get an appointment, MAKE them take your concerns seriously. Request an MRI and LP and don't leave until you get it! Doctors forget they work for us, we pay their salaries. Go in with notes, facts and your thoughts. If nothing else, tell them you have exhausted every ave on what it could be so you want these 2 distinct tests to rule MS out once and for all. As soon as you hit that 50 yr mark they start blaming everything on your age...EVEN AFTER YOU HAVE A DIAGNOSIS! It is very frustrating and every MS'er is different and they seem to forget that. I have 1 small lesion, a TON of symptoms/issues and 4 LP's that came back positive. I went from RRMS to a diagnosis of PPMS because of my symptoms NOT my MRI. It's taken me 54 years to get here and I finally have an answer and feel like I AM NOT CRAZY! Good luck and keep us posted 😉

    1. Thank you so much! I go in 3/10 and I plan on being persistent. The symptoms are getting progressively worse and I need to at least be minimally functional. Appreciate the advice!!

    2. Hi @LoriLynn,
      How did your appointment go this week? Does it seem like your consultation will lead to further testing and ultimately some answers?
      Lisa, Team Member

  2. It IS time.

    The symptoms you described "nerve pain, joint pain, muscle weakness, extreme fatigue, bladder urgency and cannot hold my bladder, very annoying itchiness" are all symptoms I shared with you and so I'd like to share how I got my diagnosis.

    My primary care at the time wanted to do all other kinds of tests and undermined my opinions, but after a scary week where I couldn't feel my face, I told her I NEED an MRI. I don't have time to wait for this to get worse. She pushed against it, and I cancelled my next appointment to seek help elsewhere.

    Insist on an MRI. Do not let doctors convince you that you don't need one. Get an MRI with and without contrast of the brain. The contrast will show active lesions if there are any.

    It was an ER doctor that recommended my current PCP.

    I found a primary care who listened to my concerns and I insisted that with my research, symptoms, and medical history my gut instinct was pushing me to get an MRI and so he wrote me an order. A week later I got the MRI, and the MRI tech called my new PCP same day
    because my brain showed activity commonly seen in people with MS, but to not make assumptions yet. (Bless the underappreciated lab techs)

    After speaking with my PCP about the results I immediately dove into searching for the best MS specialist in the metroplex (online searches) so they could screen me and either diagnose me or rule out MS. After another call, I received my referral to the Neurology and MS Clinic.

    The day I saw the neuro, he did a physical evaluation and explained what he saw in my MRI and said "this is your diagnosis. MS IS your diagnosis." It was both world-shattering and a relief to know. I learned a lot that day and continue to learn.

    Since beginning medication almost two years ago my quality of life has improved significantly. I do still experience fatigue, I still experience muscle, joint and nerve pain. I'm still itchy and sometimes I still get the sudden urge to go, but it is all at a much more manageable level and I have more good days than not.

    My neuro also recommended changes to help specifically with the MS such as vitamin D supplements, getting more sunlight, increase in healthy Omega fats, a lower amount of inflammatory and processed foods, yoga, etc.

    Be your strongest advocator because you know your body best. You're the only one living in it.

    The best of luck to you and I hope you find answers soon. Much love and peace your way.

    1. Thank you! I will insist on the MRI. It is nice to get some confirmation that maybe I am not crazy. So appreciate the support!!

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