{"id":125482,"date":"2023-04-29T13:00:59","date_gmt":"2023-04-29T17:00:59","guid":{"rendered":"https:\/\/rarediseases.org\/?p=125482"},"modified":"2023-04-28T13:58:28","modified_gmt":"2023-04-28T17:58:28","slug":"kylee-undiagnosed","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/kylee-undiagnosed\/","title":{"rendered":"Undiagnosed: When Your \u201cDepression\u201d Isn\u2019t Depression"},"content":{"rendered":"

By Kylee S.<\/span>\u00a0<\/span><\/p>\n

This story is about me and my long journey to a diagnosis. Although I might have had mild symptoms as a child, it was nothing noticeable. My symptoms began in my early 20s with some uncontrolled movement that affected my legs and arms. I began seeking treatment with my local ER, general practitioner, and neurologists. This diagnostic journey is the worst part of the whole experience and is the reason I am sharing my story.<\/span>\u00a0<\/span><\/p>\n

My diagnosis took about 21 years<\/span><\/b>.<\/span>\u00a0<\/span><\/p>\n

My first onset of symptoms lasted over seven months and got progressively worse as time passed. I went to a neurologist who concluded my increased trouble with walking was due to depression. He determined that I was depressed because I didn’t have a husband, boyfriend, children, or pet. I’d recently moved to the community and was in my early 20s so, to me, that seemed normal. I wasn’t distraught about my lack of those relationships.<\/span><\/p>\n

I next made an appointment with a doctor in a neuroscience office, but I didn’t know really who I needed to see. He felt that I had <\/span>dystonia<\/span><\/a> but wasn’t the right type of doctor to diagnose it and encouraged me to see a different neurologist.<\/span><\/p>\n

Next, I went to a neurologist in a bigger city. He had a pretty good reputation, so I was excited to get his input. He told me there was nothing wrong with me and suggested that, evidently, I \u201cneeded a lot of attention.\u201d <\/span>At this point I needed a cane to walk.<\/span><\/b><\/p>\n

My General Practitioner asked if I would be willing to go to the Mayo Clinic, which I was. I made arrangements for two weeks of testing. I specifically asked about checking into dystonia. At the end of the testing, they told me there was nothing wrong with me in neurology and invited me back for psychiatric testing. <\/span>\u00a0<\/span><\/p>\n

I went home and made appointments with alternative medicine doctors. I found a chiropractor who diagnosed me with a calcium deficiency and sold me expensive vitamins. I thought they helped, and he must be right because I was feeling better a little at a time.<\/span><\/p>\n

For the next 20 years, I was almost afraid to go to the doctor unless I was desperate.<\/span><\/b> I would have small episodes of not being able to walk well after being active. I would take some calcium and rest and it would go away. I probably should have been seeking out help from other specialists, but I didn’t need anyone else to tell me I needed psychiatric help.<\/span><\/p>\n

In April 2022, I began having symptoms again, but this time they were worse and would not relent. I tried calcium supplements, but they didn’t help. I went to an endocrinologist because I had been diagnosed with thyroid issues within those 20 years, so we decided to start there. The endocrinologist spent five\u00a0minutes with me, ordered a few blood tests, and assured me that whatever was happening couldn’t be explained with endocrinology.<\/span><\/p>\n

Against my better judgment, I considered seeing a neurologist again. I did research this time and learned about the existence of movement disorder specialists. I made it my mission to get an appointment with one of those doctors as soon as possible. I had to get a referral from neurology, so I found a hospital in another state that had neurologists and movement disorder specialists.<\/span>\u00a0<\/span><\/p>\n

In March of 2023, I had to endure MRI’s, EMGs, and test-out medications but<\/span> finally, I had a diagnosis:<\/span><\/b> dopa-responsive dystonia<\/span><\/a> with parkinsonism.\u00a0<\/span>\u00a0<\/span><\/p>\n

Now, as long as I keep up with my medications and be a little careful about overdoing it, I can have a mostly normal life. I have to make sure I set alarms to take my meds on time and carry a chair backpack or portable stool when I am walking long distances for festivals or hiking. I don’t need the cane anymore, or at least not unless I really overdo it.<\/span>\u00a0<\/span><\/p>\n

I decided to share my story because I want others to know there may still be answers for you, even if others have indicated you are making it up.<\/span> Keep searching for the right specialists.<\/span> Do your own research. Advocate for yourself! Be brave and bold! Don’t accept ridiculous answers! Most of all, <\/span>don’t give up.<\/span><\/b>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

By Kylee S.\u00a0 This story is about me and my long journey to a diagnosis. Although I might have had mild symptoms as a child, it was nothing noticeable. My … <\/p>\n

Continue reading “Undiagnosed: When Your \u201cDepression\u201d Isn\u2019t Depression”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[505],"tags":[],"class_list":["post-125482","post","type-post","status-publish","format-standard","hentry","category-patient-stories"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/125482","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=125482"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/125482\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=125482"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=125482"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=125482"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}