Hello, all! My name is Kathryn and I am a 49 yo RN of 19 yrs. I am going through the process of diagnosis, serum biomarker positive, symptomatic and awaiting an MRI tomorrow to find out how much damage is done. I have been diagnosed with two handfuls of medical issues and then some throughout my adulthood, none of which were an 'answer' and always ended up back in the psychiatrist office.
I am livid with our health care system and the lack of interest in doctors to keep looking until they get a proper diagnosis. I am VERY fortunate to finally have the answer, as if this went on another 10 yrs, I might be in a wheelchair.
In january of 2015, I had a seizure where I lost consciousness and ended up with an injury. The next day I was in the doctors office and was referred for an EEG. The day after that, I had another episode on the job, held onto consciousness, and was 'let go' the following day. Now unemployed and unemployable, immediately applied for SSDI.... now pending an answer after an appeal hearing.. still waiting after 16 months. I thought, finally, I have epilepsy, that would explain a lot... Absent seizures.
Then my long journey to diagnosis ultimately thru Cleveland Clinic. After a 7 day monitored hospital stay, these 'experts' determined I had psychogenic non-epileptic seizure disorder... NEVER an MRI, which would have clued them in to MS. They said it was all stress and I needed to learn to manage it better and I needed a psychiatrist... again. Back to the drawing board!! I have always known there was something wrong and felt it was coming from my brain, but NOT psych, organic.
Not willing to settle for 'this is a psych issue', I decided to see a holistic practitioner, who actually LISTENED to me and my story. She made a plan of care, but unfortunately I was unable to follow thru with everything until I got my income tax return. One test was a red cell biomarker test ran thru Jonhs-Hopkins and took a month to result. Low and behold, every marker for MS!!
I have had profound fatigue for as long as I can remember... too much stress... Migraine headaches... too much stress... muscle aches and pains... fibromyalgia... psych.... hypochondriac... just wanting attention... memory problems... too much stress... seizures... too much stress... all test negative.
Then, about three weeks ago, I was out in the Florida heat doing yard work. The next day I woke up and could barely walk, every joint in my body hurt and everything puffy. I thought I just overdid it. Three days later went to ER after I started getting bone pain as well. -- all tests negative... go see a rheumatologist. Went to primary and ordered lupus/RA work-up... negative. Then came the special blood test trhu the holistic practitioner, showed the primary, who FINALLY orders an MRI.
Meanwhile, still have the pain, difficulty walking, and debilitating fatigue... was refused pain meds, given cymbalta and mobic. Cymbalta helped with the pins and needles in my feet, but the bone pain remains. I just don't understand why docs won't help with the pain... vicious cycle... the pain increases the fatigue and my quality of life is in the toilet... Someone who rarely sat home, athletic and active, now it is all I can do to get to the couch. I just want some semblance of my life back. At least I'm on the right path, finally.
I am livid with our health care system and the lack of interest in doctors to keep looking until they get a proper diagnosis. I am VERY fortunate to finally have the answer, as if this went on another 10 yrs, I might be in a wheelchair.
In january of 2015, I had a seizure where I lost consciousness and ended up with an injury. The next day I was in the doctors office and was referred for an EEG. The day after that, I had another episode on the job, held onto consciousness, and was 'let go' the following day. Now unemployed and unemployable, immediately applied for SSDI.... now pending an answer after an appeal hearing.. still waiting after 16 months. I thought, finally, I have epilepsy, that would explain a lot... Absent seizures.
Then my long journey to diagnosis ultimately thru Cleveland Clinic. After a 7 day monitored hospital stay, these 'experts' determined I had psychogenic non-epileptic seizure disorder... NEVER an MRI, which would have clued them in to MS. They said it was all stress and I needed to learn to manage it better and I needed a psychiatrist... again. Back to the drawing board!! I have always known there was something wrong and felt it was coming from my brain, but NOT psych, organic.
Not willing to settle for 'this is a psych issue', I decided to see a holistic practitioner, who actually LISTENED to me and my story. She made a plan of care, but unfortunately I was unable to follow thru with everything until I got my income tax return. One test was a red cell biomarker test ran thru Jonhs-Hopkins and took a month to result. Low and behold, every marker for MS!!
I have had profound fatigue for as long as I can remember... too much stress... Migraine headaches... too much stress... muscle aches and pains... fibromyalgia... psych.... hypochondriac... just wanting attention... memory problems... too much stress... seizures... too much stress... all test negative.
Then, about three weeks ago, I was out in the Florida heat doing yard work. The next day I woke up and could barely walk, every joint in my body hurt and everything puffy. I thought I just overdid it. Three days later went to ER after I started getting bone pain as well. -- all tests negative... go see a rheumatologist. Went to primary and ordered lupus/RA work-up... negative. Then came the special blood test trhu the holistic practitioner, showed the primary, who FINALLY orders an MRI.
Meanwhile, still have the pain, difficulty walking, and debilitating fatigue... was refused pain meds, given cymbalta and mobic. Cymbalta helped with the pins and needles in my feet, but the bone pain remains. I just don't understand why docs won't help with the pain... vicious cycle... the pain increases the fatigue and my quality of life is in the toilet... Someone who rarely sat home, athletic and active, now it is all I can do to get to the couch. I just want some semblance of my life back. At least I'm on the right path, finally.
Comment