Post by steamworksprocket on May 2, 2016 19:21:08 GMT -5
I didn't want to post in the main thread because everyone is having so much fun and I hate dragging down the mood anywhere. But with all the nonsense I had to go through, I'm hoping this helps someone else. I missed joining in a lot with the community last year because I was dealing with this issue but hopefully, this year, I can be a bit more active <3 I nabbed most of this from my post on the VBGA because my hands are a bit cranky this morning and I need to save them for work.
I only got the final, official diagnosis this past Wednesday and it's still all settling in. I was dealing alright with it a few days ago, but I think everything finally hit home on the weekend.
I had kidney failure at 18 months due to E.coli triggered haemolytic uremic syndrome (HUS) and (as we now suspect) haemolytic anemia. I was in the lucky 50% who survived the initial illness and the even luckier 5% who didn't require permanent dialysis and/or kidney transplants. My kidneys were scarred, though, and I only have around 80% usage; I ended up with hypertension at 15 due to the damage. On top of this, our family genetic history isn't great either. There is breast cancer and MS on my mother's side, hypertension and eye sight issues (I have severe astigmatism) on Dad's side, and arthritis on both.
In high school, alongside the hypertension, I developed heart palpitations from stress and chronic fatigue. I passed out a few times, and that continued into my university years. We wrote it all off, though, as a combination of stress from studying and working, as well as the long term kidney issues. I was working as a swimming teacher while at university and one day committed the cardinal sin of bend-lift-and-twist to get one little girl out of the pool at the end of a lesson. I immediately felt something go horribly wrong with my back. I limped my equipment back to the rack, got myself changed and called in at reception to tell them to get someone to cover my classes for the rest of the week (we were a teaching-only pool). Headed to the osteopath who (mis)diagnosd me with a sprain. I was meant to take at least 2 weeks off work but we'd hit cold and flu season and we didn't have enough temp-teachers to cover all the teachers. So I came back early. I knew something was much worse by the time I finished my shift.
The office staff helped me home and I headed to the spinal clinic as soon as possible. The result? Two bulging discs in my L5 and S1 (lumbar and sacrum), what I was later told is highly unusual in a 21-year-old. I had to quit working at the pool and headed into physical therapy. I graduated university with a walking stick and one hell of a limp. I did a year of physical therapy and everything seemed to be going well...until I took a very, very sudden down swing. Pain started migrating out of my back and into my legs. I developed a red, butterfly marking across my face, keratosis pilaris and PCOS. We returned to the spinal clinic who ran scans again and confirmed that my discs were "healed" (they no longer pressed on any nerves are were considered only partially bulging). The doctor, however, took one look at my face and asked if we'd considered arthritis.
No, we had not.
We immediately went to my GP who organised a referral to Doctor I.R. But because the wait was so long he also referred me to a specialist GP who could begin getting the required tests and prescribed me 20mg prednisolone.
Specialist GP, however, narrowed in immediately on my tattoo and was CONVINCED I had Hep B. Most of the blood screenings he did were for Hep B., not arthritis and auto immune, and he ignored the high protein count in my kidney tests. He was most upset when I came back Hep B. free -.- He didn't listen to me tell him that the prednisolone had stopped all the pain and that the pain had come back as soon as I was off it.
Doctor I.R was my first rheumatologist. He barely looked at my blood tests, MRIs, CTs or bone scans. He didn't examine me at all, simply told me I had no "markers" for arthritis in my blood. I was told I was too young to have arthritis and I was clearly suffering from fibromyalgia. He immediately referred me to Doctor P.B. Again, he did not listen when I told him about the prednisolone.
Doctor P.B. was the supposed "Australian expert and specialist" in fibromyalgia. He ran no tests on me, did no examinations; simply determined that I "definitely had fibromyalgia" and pressed hundreds of dollars of books and DVDs on us, as well as signing me up, without my consent, to support groups and specialist centres for experimental treatments. Each week I saw him, he would change his tune regarding my symptoms. One week the swelling in my hands and feet would be "clearly fibromyalgia". The next week I was "just fat" (at this point I was an Aussie size 6, which is an American 2-4). Yep, magical disappearing fat!
The different medications he tried me on did nothing for the pain but despite the fact I didn't respond to any of his treatments, he was still determined that I had fibromyalgia. His excuse? "You show no markings for arthritis in your blood". My last meeting with him, Doctor P.B. had a new treatment plan. I would go into hospital for a week each month for a ketamine drip - for the rest of my life.
...I walked out of the centre at that point, only to be called a week later by the hospital asking why I hadn't shown up for the treatment. He'd, once again, booked me in without telling me or my consent. They were pretty rude when I told them I had not consented and I was not coming in.
I refused to return to him and tried to get on as best I could. At this point the pain was well rooted in my feet, ankles and knees. The year it started in my hands I got afraid - I'm a writer, I need working hands! I went back to my GP who was appalled at the ketamine treatment plan. He reordered all the blood screenings, all the bone scans/MRIs and CTs and referred me to Doctor C.M.
Doctor C.M. would have fit comfortably into Victorian Era medical ideologies. He, too, ignored my elevated protein levels, my elevated inflammation levels, my rash, my skin condition, the slow spread of joint pain. He pointed out, again, that I had "no blood markers" for arthritis. He stopped just short of diagnosing me as simply a hysterical woman (though you could read it in his eyes) and instead told me I was "just depressed". He recommended I join a depression support group and told me he didn't need to see me again.
I returned to my GP with this diagnosis. He, too, was shocked but for everyone's peace of mind I undertook all the tests we could to determine if I did have depression. I scored the lowest score my GP had ever seen - I was not depressed. We, once again, tested the prednisolone and, once again, it took away all the pain. But my GP was anxious about me being on it long term with no clear idea of what was wrong with me, so I was soon weaned off it and back to the pain.
I pushed on alone for a year, trying to handle things with diet and exercise but it was exhausting. My Mum ended up contacting Arthritis Victoria and asking if they had any doctors they could recommend (off the record) for young people. We were directed to Doctor R.A. So it was back to the GP for a referral and on to Doctor R.A.
Doctor R.A, this time, was the one to order all the blood tests and scans. I was hopeful. Doctor R.A. acknowledged the raised inflammation levels. She acknowledged that the scans had found evidence of inflammation in my tendons. She acknowledged my blood showed signs that I had had SEVERAL infections over the years (unbeknownst to me) that were known to trigger the onset of arthritis. She even acknowledged that the prednisolone seemed to work! And then the crushing blow. Once again I had "no blood markers" for arthritis and the rash on my face was "just genetic redness". She diagnosed me with generalised back pain, told me to get more exercise and sent me away.
So I pretty much gave up. I knew something was wrong. I was progressively getting sicker and sicker. But no doctor would listen to me, they were so focused on what wasn't showing in my blood screenings. Last year, the pains began to creep into my sternum and collarbone, making it hellish to get up and going in the mornings. I pushed on with diet and exercise and smothering myself with heated wheatbags in the mornings and evenings, and living off aspirin. Even those around me could see I was getting worse. It was one of the biggest reasons why I was quiet both with the Sphinxes and, really, most places online last year. I was just so tired and sick every day. Over New Year I visited StrawberryZombie who saw, first hand, the way my hands would rapidly change colour and swell, and how difficult it was for me to move.
A month after I got home, the pain in my chest got worse and worse, waking me up at night. Finally, one night, the pain reached the point where I thought I was having a heart attack. I couldn't get a full breath and I could barely walk. My parents rushed me to hospital. I was poked, prodded and scanned, then finally I got two shots of morphine that numbed much of the pain. The ER doctor was happy to send me home, so long as someone was there to keep an eye on me. He gave me a prescription of Endone for the flare ups (I had three equally severe flare ups after the hospitalisation) but said he was extremely concerned about my blood tests - especially the high kidney protein readings. He referred me to the rheumotologist who was associated with the hospital, Doctor F.G.
I returned to my GP who was shocked not only at the hospitialisation but also how terrible I looked. He prescribed Mobic, which I could take as it was less stressful on my body than the Endone (which made me very confused and sleepy and gave me the most horrifying, vivid nightmares), and asked to be kept in the loop with the new doctor (note, to this point, none of the other doctors had ever contacted him regarding their findings).
A month after I got home, the pain in my chest got worse and worse, waking me up at night. Finally, one night, the pain reached the point where I thought I was having a heart attack. I couldn't get a full breath and I could barely walk. My parents rushed me to hospital. I was poked, prodded and scanned, then finally I got two shots of morphine that numbed much of the pain. The ER doctor was happy to send me home, so long as someone was there to keep an eye on me. He gave me a prescription of Endone for the flare ups (I had three equally severe flare ups after the hospitalisation) but said he was extremely concerned about my blood tests - especially the high kidney protein readings. He referred me to the rheumotologist who was associated with the hospital, Doctor F.G.
I returned to my GP who was shocked not only at the hospitialisation but also how terrible I looked. He prescribed Mobic, which I could take as it was less stressful on my body than the Endone (which made me very confused and sleepy), and asked to be kept in the loop with the new doctor (note, to this point, none of the other doctors had ever contacted him regarding their findings).
What happened though, was a miracle. Doctor F.G. actually listened. He sat taking notes on everything I said. He took notes about my childhood issues, the kidney failure, the instances of MS and arthritis in the family, the way my symptoms reacted to different medications. We then did the most thorough examination any doctor has ever done. We literally went from my head down, working through a mile long list of symptoms. He had a great many things to say about my past doctors and what he thought of their diagnosing ability. He pointed out that, even without blood work, I was showing exceptionally clear signs of autoimmune disease. Doctor F.G. then ordered more tests and scans (after apologising for putting me through them all again) and sent me home with a 25mg prednisolone prescription.
I was still afraid. I'd gotten to this point with all the other doctors before. Even though Doctor F.G. had been so thorough I was still quietly terrified of being turned away again. I saw Doctor F.G. on Wednesday morning. By Wednesday afternoon - it was a long appointment - I had a diagnosis.
There are eleven symptoms that make up a lupus diagnosis. To be diagnosed with lupus, you need to have four of them.
I have nine. I have lupus.
Contrary to all my past doctors' assertions, I came back with:
-a positive ANA
-a malar rash
-discoid rash (keratosis pilaris)
-photosenstivity
-oral and nasal ulcers
-arthritis (hands, knees and feet)
-serositis (resulting in non-pneumonia pleurisy and Tietze syndrome/costochondritis in my chest aka the violent chest pains)
-the past haemolyic disorders
-elevated full body inflammation.
We were lucky to catch it before it reached my brain. I have a treatment plan, I have pills that will ease the pain and stop the severe muscle spasms in my back. People have already remarked that they've never seen me looking so alert and energised. In the mornings, I'm actually awake. I want to do things. I can get up and make my own food rather than taking an hour to slowly get myself moving.
My kidney scores were extremely negative. We are now retesting to see what is causing the elevated levels. In lupus, the kidneys are usually attacked first, so the best case scenario is that the elevated levels were caused by lupus inflammation. If this is so, then the medication I'm on should have already dropped the count. If not...then I need to go very quickly to a renal specialist for biopsies.
So now, I feel strange. I'm happy that I have a diagnosis. I feel vindicated that I wasn't mad or lying, like so many doctors tried to make me believe. But at the same time I feel awful for being happy that I have a this monster in me. I'm terrified of what the results of the kidney tests will bring, and what will happen if they're still negative. And I am so, so angry with everyone in the past who dismissed me.
Today I got off the phone with Doctor F.G and we need to raise the Prednisolone levels again because dropping it by even 5mg has seen the pleurisy issues flare up again. It's just tiring and frustrating and I would love to just strangle something, lol ^_^;
I'm sorry for this being so long and, really, rather pointless. I guess, to end this...if you are like me, and you are in the same situation, don't stop fighting. You are the one who truly knows how you feel and if you feel like something is wrong, keep telling people until you find that person who will listen. Don't let it get to my point; just keep pushing and fighting. And if you are going through something similar, know that you're not alone.
I only got the final, official diagnosis this past Wednesday and it's still all settling in. I was dealing alright with it a few days ago, but I think everything finally hit home on the weekend.
I had kidney failure at 18 months due to E.coli triggered haemolytic uremic syndrome (HUS) and (as we now suspect) haemolytic anemia. I was in the lucky 50% who survived the initial illness and the even luckier 5% who didn't require permanent dialysis and/or kidney transplants. My kidneys were scarred, though, and I only have around 80% usage; I ended up with hypertension at 15 due to the damage. On top of this, our family genetic history isn't great either. There is breast cancer and MS on my mother's side, hypertension and eye sight issues (I have severe astigmatism) on Dad's side, and arthritis on both.
In high school, alongside the hypertension, I developed heart palpitations from stress and chronic fatigue. I passed out a few times, and that continued into my university years. We wrote it all off, though, as a combination of stress from studying and working, as well as the long term kidney issues. I was working as a swimming teacher while at university and one day committed the cardinal sin of bend-lift-and-twist to get one little girl out of the pool at the end of a lesson. I immediately felt something go horribly wrong with my back. I limped my equipment back to the rack, got myself changed and called in at reception to tell them to get someone to cover my classes for the rest of the week (we were a teaching-only pool). Headed to the osteopath who (mis)diagnosd me with a sprain. I was meant to take at least 2 weeks off work but we'd hit cold and flu season and we didn't have enough temp-teachers to cover all the teachers. So I came back early. I knew something was much worse by the time I finished my shift.
The office staff helped me home and I headed to the spinal clinic as soon as possible. The result? Two bulging discs in my L5 and S1 (lumbar and sacrum), what I was later told is highly unusual in a 21-year-old. I had to quit working at the pool and headed into physical therapy. I graduated university with a walking stick and one hell of a limp. I did a year of physical therapy and everything seemed to be going well...until I took a very, very sudden down swing. Pain started migrating out of my back and into my legs. I developed a red, butterfly marking across my face, keratosis pilaris and PCOS. We returned to the spinal clinic who ran scans again and confirmed that my discs were "healed" (they no longer pressed on any nerves are were considered only partially bulging). The doctor, however, took one look at my face and asked if we'd considered arthritis.
No, we had not.
We immediately went to my GP who organised a referral to Doctor I.R. But because the wait was so long he also referred me to a specialist GP who could begin getting the required tests and prescribed me 20mg prednisolone.
Specialist GP, however, narrowed in immediately on my tattoo and was CONVINCED I had Hep B. Most of the blood screenings he did were for Hep B., not arthritis and auto immune, and he ignored the high protein count in my kidney tests. He was most upset when I came back Hep B. free -.- He didn't listen to me tell him that the prednisolone had stopped all the pain and that the pain had come back as soon as I was off it.
Doctor I.R was my first rheumatologist. He barely looked at my blood tests, MRIs, CTs or bone scans. He didn't examine me at all, simply told me I had no "markers" for arthritis in my blood. I was told I was too young to have arthritis and I was clearly suffering from fibromyalgia. He immediately referred me to Doctor P.B. Again, he did not listen when I told him about the prednisolone.
Doctor P.B. was the supposed "Australian expert and specialist" in fibromyalgia. He ran no tests on me, did no examinations; simply determined that I "definitely had fibromyalgia" and pressed hundreds of dollars of books and DVDs on us, as well as signing me up, without my consent, to support groups and specialist centres for experimental treatments. Each week I saw him, he would change his tune regarding my symptoms. One week the swelling in my hands and feet would be "clearly fibromyalgia". The next week I was "just fat" (at this point I was an Aussie size 6, which is an American 2-4). Yep, magical disappearing fat!
The different medications he tried me on did nothing for the pain but despite the fact I didn't respond to any of his treatments, he was still determined that I had fibromyalgia. His excuse? "You show no markings for arthritis in your blood". My last meeting with him, Doctor P.B. had a new treatment plan. I would go into hospital for a week each month for a ketamine drip - for the rest of my life.
...I walked out of the centre at that point, only to be called a week later by the hospital asking why I hadn't shown up for the treatment. He'd, once again, booked me in without telling me or my consent. They were pretty rude when I told them I had not consented and I was not coming in.
I refused to return to him and tried to get on as best I could. At this point the pain was well rooted in my feet, ankles and knees. The year it started in my hands I got afraid - I'm a writer, I need working hands! I went back to my GP who was appalled at the ketamine treatment plan. He reordered all the blood screenings, all the bone scans/MRIs and CTs and referred me to Doctor C.M.
Doctor C.M. would have fit comfortably into Victorian Era medical ideologies. He, too, ignored my elevated protein levels, my elevated inflammation levels, my rash, my skin condition, the slow spread of joint pain. He pointed out, again, that I had "no blood markers" for arthritis. He stopped just short of diagnosing me as simply a hysterical woman (though you could read it in his eyes) and instead told me I was "just depressed". He recommended I join a depression support group and told me he didn't need to see me again.
I returned to my GP with this diagnosis. He, too, was shocked but for everyone's peace of mind I undertook all the tests we could to determine if I did have depression. I scored the lowest score my GP had ever seen - I was not depressed. We, once again, tested the prednisolone and, once again, it took away all the pain. But my GP was anxious about me being on it long term with no clear idea of what was wrong with me, so I was soon weaned off it and back to the pain.
I pushed on alone for a year, trying to handle things with diet and exercise but it was exhausting. My Mum ended up contacting Arthritis Victoria and asking if they had any doctors they could recommend (off the record) for young people. We were directed to Doctor R.A. So it was back to the GP for a referral and on to Doctor R.A.
Doctor R.A, this time, was the one to order all the blood tests and scans. I was hopeful. Doctor R.A. acknowledged the raised inflammation levels. She acknowledged that the scans had found evidence of inflammation in my tendons. She acknowledged my blood showed signs that I had had SEVERAL infections over the years (unbeknownst to me) that were known to trigger the onset of arthritis. She even acknowledged that the prednisolone seemed to work! And then the crushing blow. Once again I had "no blood markers" for arthritis and the rash on my face was "just genetic redness". She diagnosed me with generalised back pain, told me to get more exercise and sent me away.
So I pretty much gave up. I knew something was wrong. I was progressively getting sicker and sicker. But no doctor would listen to me, they were so focused on what wasn't showing in my blood screenings. Last year, the pains began to creep into my sternum and collarbone, making it hellish to get up and going in the mornings. I pushed on with diet and exercise and smothering myself with heated wheatbags in the mornings and evenings, and living off aspirin. Even those around me could see I was getting worse. It was one of the biggest reasons why I was quiet both with the Sphinxes and, really, most places online last year. I was just so tired and sick every day. Over New Year I visited StrawberryZombie who saw, first hand, the way my hands would rapidly change colour and swell, and how difficult it was for me to move.
A month after I got home, the pain in my chest got worse and worse, waking me up at night. Finally, one night, the pain reached the point where I thought I was having a heart attack. I couldn't get a full breath and I could barely walk. My parents rushed me to hospital. I was poked, prodded and scanned, then finally I got two shots of morphine that numbed much of the pain. The ER doctor was happy to send me home, so long as someone was there to keep an eye on me. He gave me a prescription of Endone for the flare ups (I had three equally severe flare ups after the hospitalisation) but said he was extremely concerned about my blood tests - especially the high kidney protein readings. He referred me to the rheumotologist who was associated with the hospital, Doctor F.G.
I returned to my GP who was shocked not only at the hospitialisation but also how terrible I looked. He prescribed Mobic, which I could take as it was less stressful on my body than the Endone (which made me very confused and sleepy and gave me the most horrifying, vivid nightmares), and asked to be kept in the loop with the new doctor (note, to this point, none of the other doctors had ever contacted him regarding their findings).
A month after I got home, the pain in my chest got worse and worse, waking me up at night. Finally, one night, the pain reached the point where I thought I was having a heart attack. I couldn't get a full breath and I could barely walk. My parents rushed me to hospital. I was poked, prodded and scanned, then finally I got two shots of morphine that numbed much of the pain. The ER doctor was happy to send me home, so long as someone was there to keep an eye on me. He gave me a prescription of Endone for the flare ups (I had three equally severe flare ups after the hospitalisation) but said he was extremely concerned about my blood tests - especially the high kidney protein readings. He referred me to the rheumotologist who was associated with the hospital, Doctor F.G.
I returned to my GP who was shocked not only at the hospitialisation but also how terrible I looked. He prescribed Mobic, which I could take as it was less stressful on my body than the Endone (which made me very confused and sleepy), and asked to be kept in the loop with the new doctor (note, to this point, none of the other doctors had ever contacted him regarding their findings).
What happened though, was a miracle. Doctor F.G. actually listened. He sat taking notes on everything I said. He took notes about my childhood issues, the kidney failure, the instances of MS and arthritis in the family, the way my symptoms reacted to different medications. We then did the most thorough examination any doctor has ever done. We literally went from my head down, working through a mile long list of symptoms. He had a great many things to say about my past doctors and what he thought of their diagnosing ability. He pointed out that, even without blood work, I was showing exceptionally clear signs of autoimmune disease. Doctor F.G. then ordered more tests and scans (after apologising for putting me through them all again) and sent me home with a 25mg prednisolone prescription.
I was still afraid. I'd gotten to this point with all the other doctors before. Even though Doctor F.G. had been so thorough I was still quietly terrified of being turned away again. I saw Doctor F.G. on Wednesday morning. By Wednesday afternoon - it was a long appointment - I had a diagnosis.
There are eleven symptoms that make up a lupus diagnosis. To be diagnosed with lupus, you need to have four of them.
I have nine. I have lupus.
Contrary to all my past doctors' assertions, I came back with:
-a positive ANA
-a malar rash
-discoid rash (keratosis pilaris)
-photosenstivity
-oral and nasal ulcers
-arthritis (hands, knees and feet)
-serositis (resulting in non-pneumonia pleurisy and Tietze syndrome/costochondritis in my chest aka the violent chest pains)
-the past haemolyic disorders
-elevated full body inflammation.
We were lucky to catch it before it reached my brain. I have a treatment plan, I have pills that will ease the pain and stop the severe muscle spasms in my back. People have already remarked that they've never seen me looking so alert and energised. In the mornings, I'm actually awake. I want to do things. I can get up and make my own food rather than taking an hour to slowly get myself moving.
My kidney scores were extremely negative. We are now retesting to see what is causing the elevated levels. In lupus, the kidneys are usually attacked first, so the best case scenario is that the elevated levels were caused by lupus inflammation. If this is so, then the medication I'm on should have already dropped the count. If not...then I need to go very quickly to a renal specialist for biopsies.
So now, I feel strange. I'm happy that I have a diagnosis. I feel vindicated that I wasn't mad or lying, like so many doctors tried to make me believe. But at the same time I feel awful for being happy that I have a this monster in me. I'm terrified of what the results of the kidney tests will bring, and what will happen if they're still negative. And I am so, so angry with everyone in the past who dismissed me.
Today I got off the phone with Doctor F.G and we need to raise the Prednisolone levels again because dropping it by even 5mg has seen the pleurisy issues flare up again. It's just tiring and frustrating and I would love to just strangle something, lol ^_^;
I'm sorry for this being so long and, really, rather pointless. I guess, to end this...if you are like me, and you are in the same situation, don't stop fighting. You are the one who truly knows how you feel and if you feel like something is wrong, keep telling people until you find that person who will listen. Don't let it get to my point; just keep pushing and fighting. And if you are going through something similar, know that you're not alone.
*huge hugs*
