- CASE FILE
Hi I’M Kim. I’m declining fast. Neuromuscular decline w/ muscle weakness, tremors & jerks. Impaired breathing & walking.
ABOUT THIS CASE FILE
I am desperate for a cure. I am losing more and more of my independence as each day passes due to neuromuscular illness that is progressing fast. I am a caring, loving and devoted Registered Nurse. I dreamed of being a nurse all of my life and loved my career. I was a fierce advocate for my patients, always fighting and demanding the best care possible. for my patients. I’m on the other side of the clip board now, and need someone to help me fight and advocate for me. 3 years ago my symptoms began with stroke like symptoms and then acquiring of Foreign Accent Syndrome. I speak w/ an Irish accent. My disease has progressed to the point I have difficulty talking and walking, I stutter and slur my words, I walk w/ leg braces and walking sticks for balance. I have had multiple falls due to severe neuropathy and numbness and nerve pain in my feet and legs. It will not be long before I am in a wheelchair due to my limb weakness.I don’t want to give in to what is wrong with me and thus refusing the wheelchair as of yet. I have migraines, right occipital head pain, blurry vision , my mouth droops to the left, my left face has burning nerve pain as well,as numbness and burning in my hands.I have SOB with exertion w/ a abnormal pulmonary function exam .Dystonia of my neck came on last year as well as severe muscle cramps, spasms and contractors. The pain from the muscle spasms, contractors and spasms is worse than my 2 natural child births. The muscle relaxers do not touch the pain. It is devastating to see my family watch me suffer and see me decline day by day. I have had Lupus all of my adult life, along with a heart arrhythmia , heart murmur, early onset osteoarthritis, osteoporosis, Hashimoto's thyroiditis, vasculitis of my right hand, granulomas on my right lung, asthma/sob, pleurisy, mouth ulcers, raynauds ,hyper mobile joints, moderate scoliosis. I’ve also developed a excessive startle reflex. I’ve developed a severe heat intolerance, heat causes me to not coordinate my limbs to walk, I am too week to walk and my limb tremors worsen. I’ve had 3 EEG’s to monitor brain waves for a seizure disorder, the results showed slowing in the left side of my brain. My MRI’s and MRA’s have been clear. A CT scan from Feb 2019 showed mild chronic white matter ischemic changes in my brain. A web of my right carotid artery has appeared also. I begged for 3 years for a lumbar puncture - In Dec. my Dr. finally relented and performed it. My lumbar puncture showed that I have Oligclonal bands in both my CSF and blood serum. Inflammatory cells crossed my blood brain barrier into my central nervous system. This would indicate possible MS.My immune system should not have let this happen if it was functioning properly.I thought that with these test results that I finally would have an answer .For the first time in 3 years I had hope I would have an answer. My
neurologist then referred me back to my Rheumatologist as she thinks I have CNS Lupus or
Vasculitis, my Rheumatologist referred me back to my neurologist as he feels I have MS or a
neuromuscular disease . My father Father suffered from Myasthenia Gravis, and I had a blood test for this early on when my symptoms appeared , I was told it was negative. Both Drs. Are frustrated and I have been told they cannot help me., they have no idea what is going on.and I’ve been sent on my way. I have abnormal immune system tests as well as a positive P- ANCA., my ANA remains negative. I have begged for referrals to a neuroscientist or neurologist that can piece my health puzzle together, my Drs. Have refused saying that they have referred me to specialists with no findings and They are done referring me to others, as it is time consuming for their staff. So I’m slowly wasting away at home while my family watches helpless I don’t understand why they are not fighting for my life as hard as I am. Another issue I’m dealing with is that early on in my journey I was diagnosed with conversion disorder after my MRI showed no evidence of disease or stroke. I was told that because of my vast medical knowledge I could feign and mimic symptoms
Of various disease processes. Because I was advocating for my self and asking for a lumbar puncture early on , I was told this was attention seeking behavior and that I was willing myself to be sick, and my body was reacting to this thought process. I was referred to therapy. I rather enjoyed therapy. The therapist dismissed me after 12 weeks stating I could come back if I wanted but that I did not have this disorder ,and I was only acting as an advocate for my self. She saw how difficult it was for my family to bring me not only to appointments with her, but my other Drs. and physical therapy.The therapist did help me put my health situation in perspective. I was mourning the loss of my independence and a career I not only loved, but was good at.I know nursing is my calling in this life and I was meant to heal and care for others. I was able to learn to relax not worry. She helped me see that at this point on my life I needed to focus on caring for myself instead of always putting others before me. I am able to not get upset or stress about why my Drs Aren’t attempting to figure out what is wrong with me. This diagnosis of Conversion disorder has made it difficult for me to get the care I need. Specialists see a psychiatric diagnosis and loose interest in what my test results are telling them. Even with the Oligoclonal bands in my blood and CSF I had a Neurologist look me in the eye and tell me I needed psychiatric care and that just because I had this severe abnormality in my spinal fluid , didn’t mean that I was actually sick. I looked at him and felt so defeated. Having Oligoclonal bands in both my spinal fluid and blood is a serious illness that needs to be addressed immediately.I don’t understand why I am being sent home for my family to see me waste away. My children are in college and beginning their lives. Instead of being joyful and looking towards their future they are worried about me and come to care for me. As a mother this breaks my heart. Please help me. I was told to go to a Mayo Clinic to figure out why I have progressive neuromuscular symptoms - my insurance won’t cover outside of Ca. And and I need 5,000$ deposit for each specialist I see at their clinic . I have an appeal in now. I have great insurance from my hardworking husband who is a firefighter / paramedic. It has to be used in a California. My husband is my hero, he tirelessly cares for our community and comes home to care for me. I am heartbroken watching my hero worry over the rapid and severe decline in my health. He saves lives for a living, but he can’t save me, and inside he feels like he has failed me. We used to dance together , my dream is to be in his arms two stepping around the dance floor.I do have hope, when my cure is found I will tell my story to others so that they don’t give up when fighting for their own cures. I pray my story will lead to a cure for not only myself ,but others. I want to tell people to never give up, keep fighting. I pray someone will be able to help me. I long to return to nursing to heal and to inspire others again. I want to b the matriarch of my family again. Please help me if you can, I thank you for viewing my journey.
tests, my IGG studies are abnormal, as well as C4 complement, and gamma globulin. Off and on my WBC’s are low. I have a positive PANCA and chronic hypokalemia.My ANA is negative. Basic Lyme disease testing was neg. I am desperate to know what is wrong with me , so that I may have a chance to stop the progression of this disease process so I Donita become a burden on my family. My dream is to return to nursing and to use my story to help and to inspire others to never give up. I have had flares of my Lupus that have left me very ill from life my periods of time and I always fought my way back to health , this time I am fighting for my life, but I’m not getting better. I am begging for some help, for some answers. I need some one to piece all of these puzzle pieces together.