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How to get around female bias to get diagnostic care

My fiancée and I have been to neurology at Barrow, Banner, and Honor Health in our little community of Phoenix, Arizona, for over 10 years, and her current treatment is breathing exercises. Everyone she sees -- rheumatology, gynecology, cardiology, pulmonary, maxillofacial, general neurologist, podiatrist, ENT, hematology, ect. -- tells us 'it sounds like MS.' She's just had a disk replacement, trigeminal neurologist surgery, and is scheduled for a hysterectomy. It's funny because we're hoping the hysterectomy helps the lower back and cervical pain and I just read in a Dr Keegan description that that pain can be MS. She has chronic muscle spasms and stiffness. I can hear her 'muscles' crackle during massage. She has me wring out her arms and legs, torquing and twisting the muscle and applying pressure. I'm also Reiki 3. She's fatigued 24/7. Numbness in places. Pain behind eyes, especially left eye with fluctuations in vision, which was the earliest symptom. The disk replacement gave her back the use of her left arm. The brilliant neurologists were using her limp left arm and right leg to diagnose conversation disorder for 10 years, then an orthopedic surgion fixes her left arm overnight with a disc replacement. Chronic migraine Noone can seem to alleviate. Severe constipation. She's slumped forward when she used to have a gymnast posture. She was a gymnast for a while. She's nauseated daily. There are balance issues. She has a baseline with elevated symptoms coming and going, for instance flash headaches that are instant and pass as quickly and spasms that have her doubled over. If she gets overheated, or overexerts she experiences a flair. Perhaps, most importantly, there's a family history of her symptoms and MS diagnosis. She's never had a neurologist review her scans. Phoenix neurologists only read the reports, and we've sent the reports to cheap internet websites where the second review found trigeminal neuralgia and spinal stenosis. Never trust a radiologist report in Phoenix is what we know. She's never had a true MS diagnostic review. Noone has done a lumbar puncture, and I don't believe anyone has done a review of her imaging for MS. Each visit with each 'primier' MS specialist at banner, honorhealth, barrow and abrazo, the specialist walked into the room and we could tell he was already of the decision no MS and ready to leave. No diagnostic work. We could also tell the difficult female childhood was the deciding factor, not the symptoms and not the lack of symptoms because those were never discussed. It's great, no MS. Wonderful. But where's the diagnostic review to back that up? Why are doctors afraid to do a lumbar puncture? She would like it done to completely rule this MS out. Where is the discussion about her imaging? Not one doctor has discussed the several imaging screens with us. I just don't get it. If it's not MS, why not work toward diagnosis, other than that of mental illness? For 10 years, she couldn’t use her arm - an orthopedic surgeon replaced a disk and her arm works. For over a year she had a jaw infection with elevated WBC, yet noone cared for it despite her direct questions about her WBC and she had to get part of her jaw cut out. She lived with painful trigeminal neuralgiaIa for years, no treatment.
A websites second review of imaging resulted in care, finally, after years of suffering. Is anyone double checking the imaging? Meanwhile, there's just no treatment or care. Each of the three instances above Barrow, Honor Health, Abrazo, and Banner wrote her off as a mental person. All 4 ignored trigeminal neuralgia, jaw infection and spinal stenosis. Ignored it. I'm open to any suggestions for how to get my fiancée medical relief in Phoenix, Arizona. Maybe legal action is all anyone understands? I have no idea why she's time and again completely discarded and ignored by our medical community.

  1. I'm so sorry to hear the years of symptoms that your wife has been experiencing. That's such a long time to have ongoing and painful symptoms. I'm sure it's been equally as hard for to see her struggling in so many ways too.

    It's incredibly frustrating and disheartening to meet with a doctor - left alone the many doctors that you have been to - and not feel heard or understood. You're asking great questions and should have a better understanding of the answers.


    Have you asked them directly why she couldn't have a lumbar puncture/spinal tap to rule out MS? It sounds like she's had some MRI imaging done, but you haven't gotten the results yet. Is that right? Those results can sometimes be posted in a patient portal, I wonder if that's an option to explore. I'm sure you've explored all of these options, I'm just trying to share any and all suggestions that could at all be helpful.

    The other thought I had is seeing an MS specialist. I don't know if you've seen this article yet but it might offer some tips for you as well. https://multiplesclerosis.net/living-with-ms/advice-on-finding-a-good-neurologis

    I'm sure others will post their experience and ideas as well, but I hope that this is helpful in the meantime. Please keep us posted on how you and your wife are doing. She's certainly lucky to have you as a strong advocate for her. Working as a team can be so helpful in situations like this. We certainly hope that she gets some answers and relief soon.
    Best
    Alene, moderator

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