Author Topic: Misdiagnosed in Manitoba, humiliated, and almost died but Im still fighting  (Read 5088 times)

Offline cupcake105

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;D A wise man once said to me smile no matter what it always leaves the people that have wronged you wondering what your up to and the rest of the world will just smile back. I will try to keep my story minimal as even that is horrifying and hard to fathom. In 1991-1993 i came down with what was thought to be pleurisy at first. I live in rural community and at the time i was working in the bush cutting trees for hydro poles. At a mere 110 lbs and a woman i was and am tremendously strong for my size. You have to be strong to survive blastomycosis and our health care system. Pleurisy was only the beginning, soon after I started suffering night sweats and kidney failure for no apparent reason. My lung collapsed 5 times over a few months. I will not mention any doctors names as some are innocent and need to be protected and seems I have also become an innocent victim of pride and misdiagnosis. Back to my story--I was in HSC and was so white and weak and I was sent home from local hospital because collapse was not so bad I was told only 5%. This student walked by and put her books down grabbed a wheelchair and helped me get to my appointment at respiratory center.Thank God for the kindness of strangers. I was immediately admitted and was on a stretcher for standby surgery for 36 hours I lost 10% of my lung and the mysterious lesions beneath were coterized and biopsied. For what I don't know but they showed nothing, they were similar to the lesions that developed on my finger tips though. The surgeon was telling my family he would do the best he could but didn't think i would make it as at that point I weighed 85 lbs I was dying and no one knew why. I I told him to get on with it I was dying not deaf. By this time I started getting muscle spasms under my skin my muscles would jump that you could see it. And the pain in my muscles felt like someone was tearing the muscles from my bones or crushing my bones. I woke myself after surgery with my screaming i was given enough morphine to sedate a 500 lb man and i vaguely remember standing on my bed screaming , nurse refusing to give me more drugs so the doctor came and did it.Previous to this i was perfectly healthy. I was sent from doctor to doctor, sometimes I don't even remember being there i was so weak, sick and drugged. I was pumped full of every kind of antibiotic there was from time to time and I would get what I called a better level of shitty. Somewhere in between here i gave up my appendix after one doc asked me if the pain could be all in my head as i lost my appendix-which was a good thing as they found a chicken bone in it but pain in my side was still there. Because I had absolutely no body fat I got subcutaneous emphysema from that one inch incision. This is when air gets trapped in your tissue and can be very dangerous, but I was sent home from hospital. I was also a paramedic for many years so most of my co workers were confident I would be better off at home and I knew how to dial 911
No one could explain my constant pain, my kidney failure or their failure. So I was passed from doctor to doctor(some should be ashamed) especially the one who said she must be doing this to herself. I sat in this mans waiting room for 6 hours a specialist claiming to be keeping his eyes opened for blastomycosis. I sat in a room for 20 minutes and students came in wanting to do swabs and biopsy  by this time i had to change few bandages as they were weeping so badly from my 6 hour wait they were leaking into my eyes. This esteemed doctor walked by me and told the students to leave never touched me looked at my lesions handed me a prescription for anxiety pills and walked  out.By this time my lesions were not small and weeping. They looked like huge burns and my skin looked like it was rotting away. I had a lesion down to my jaw bone, one on my forehead that eventually ate threw my soft pallet so everything i drank came out my forehead. I have pictures of blue Gatorade soaking bandage on my forehead. You could see my nasal cavity as left 1/2 of my nose was gone. I was asked not to shop at local grocery store because I sneezed there one day and sneezed blood all over the floor. The manager was very very kind I would call him and he would shop and deliver my groceries to me. The kindness of strangers is remarkable. I was admitted into a psychiatric hospital not to be treated but to be watched. I made sure they could see me at all times. My lesions during my stay got worse as the sunlight seemed to make them weep more. I did talk to a psychiatrist for 3 minutes and 45 seconds( i was watching the clock) Who told me to leave and didn't care how i got home(hour away) He was so condescending all i could do was smile he told me there was nothing the matter with me as long as I didn't start talking to little green men and they started answering. He did ask me why i was smiling as he walked out and told me i should seek medical attention for my skin problem. I kid you not, that was the extent of our conversation, I have no reason at all to tell tales. My lesions worsened over next few weeks and my friend took me to her doctor. He was horrified when he saw me, he told me that he would like to admit me to the hospital but he was afraid i would die if I picked up an infection as about 30% of my body was covered in lesions. This doctor was here from another country and new to our medical system. He made a call to the disease control center and after he was told to mind his own business he turned off speaker phone and went to his office. He was yelling and I was afraid i was going to be sent away again to spend my time in solitude changing bandages myself every 4 hours. This man was brave he did not turn me away he treated me with ketoconizole because I asked him to. Within a week i was on the mend within a month my pain was completely gone. I stopped taking painkillers just like that. So that blew the theory that i was a drug addict out of the water, I took up to 800mg of ketoconizole for 14 months and was hoping that this was all over. It was over I was perfectly fine for almost 6 years. Although I will eventually need to have plastic surgery on my nose the odds are only 50% a graft will hold as there is virtually no skin on the bridge of my nose.I was offered plastic surgery at the expense of the province I didn't ask any questions. I met with a group of 20 surgeons like i was going to be a pet project. I was told the first, yes the first surgery would be about 13 hours, and very painful. worst part is if the graft didn't hold worst that could happen is i would lose my nose. I declined the offer as you can imagine I' m sure you can imagine I like what is left of my nose right where it is. I don't look in the mirror all that much and skin is only skin. It the beauty inside that shines not the wrapper of the package. I was feeling fine and the scars on the inside took bit longer to heal anyway as people can be cruel. People I knew didn't recognize me sometimes that can be a good thing. Least I still had my sense of humor which I must admit at times was really not appreciated. I am grateful for many things in my life I must admit at first I couldn't leave my house but a very good friend of mine bless her heart forced me to. I'm grateful for the doctor who quietly treated me and cared more about my health and well being than politics of cover your ass. Well at least I don't have scares there. Well I didn't but I do now.
Two years ago I went back to work for a logging company I loved it. I took a summer job working for another company and I had a market garden. I am a workaholic and I will admit it. I was healthy again, I have always eaten healthy and a lot just to maintain my weight. I have always been small but I eat around 5000 calories a day to keep from losing weight. I made the fatal mistake one day as I rarely eat in restaurants of ordering lunch. I got severe food poisoning, I vomited so hard I tore the muscles off my ribcage on one side. What I didn't know is that triggered the return of blastomycosis. I didn't want to admit it at first, because it was the pain that returned first slowly. If you touched me while I was sleeping I would scream. I had many needless test that proved nothing but my pain was excruciating even when semi-conscious-in other words I wasn't faking it. I apparently tried to leave during a colonoscopy where they found 1/3 of my stomach is dead with no known cause and part of my esophagus is scared although i have never had acid reflux. All I know is I woke up screaming and some doctor was yelling give her more(meaning drugs) I was bed ridden for almost a year at this time and tests were needless for torn muscles. I finally got to see gastroenterologist for him to diagnose torn muscles, because no one would listen to me. I waited a year for that appointment. Torn oblique muscles are not surgically repairable successfully so after many many test I started deep muscle needling which is painful and leaves nasty bruises. Yes needles and lots of them into the torn muscles. It was successful but my pain became unbearable and lesions started on my arm. I convinced my doctor to give me ketoconizole and he did for 3 months. I was again being treated with morphine, lorazipam and diazapam( for emergencies) when I cant stand the pain I take diazapam and my sensativity to drugs a very small dose knocks me out. Saves me a trip to emergency room, where I get treated with disdain and a drug seeker. After 12 hours the ketoconizole started working, pain was subsiding after few weeks I didnt need morphine. My lesions were healing after 3 months I was feeling strong enough to go back to work then my doctor refused to treat me with ketoconizole anymore. Within days I was sick again within couple weeks back on painkillers but refused to give me what was working. I was sent to more doctors and funny they refused to do any tests or treat me either, I knew something was amiss when I was accused of picking at myself yes round and round it goes. I did see this coming it was subtle at first. I wonder how many times one person can be misdiagnosed and how many doctors will pass the buck caring more about their politics than patients. We as patients are at their mercy in this province, there is just not enough of them. It has become a vicious circle that must be broken. I have been sent to doctors needlessly taking up appointments that were unnecessary, I have to keep appointments which are needless with my own doctor trying to convince him I would gladly take the anti fungal medication than the pain killers. I waste ER time because I have no choice when the pain becomes unbearable. Then I'm sent to more doctors that just brush me off as they don't  want to be involved. I have yet to see this famed sputum test or swab test seems to me they are fairly easy tests. I will admit I didnt know there was such a test until i was at the vet with my dog. She being from Ontario and very familiar gave my dog her shots and physical and kept staring at my lesions. I finally asked her why she was looking at me curiously. She told me about this swab test which apparently esteemed doctors in Winnipeg didn't bother to even do. So I actually convinced her to swab my face and she willing did it for my dog(snicker snicker) and in 5 minutes showed me what markers look like for blastomycosis. I'm not unfamiliar with this as I do have a university education behind me with several years of biology and chemistry. So was I diagnosed by a doctor , most definitely and I gladly paid the 89 dollars for it.So in Manitoba when the say they are keeping a close eye out for blastomycosis they are really keeping closed eyes So when I say you have to be strong to live threw this I mean you have to not only be physically strong, you have to be mentally strong as well and some days that is not so easy even for the best of us, because face it to begin with we are sick and tired, treated poorly unless we can make substantial donations for waiting room chairs. I must say chairs were worth the money I sat in one for six hours waiting to get brushed off by the doctor and I was not alone. I sat beside a mother with a very ill child who also was brushed off and she was beside herself. Thank God that mother didn't stop fighting and her son recovered.
This brings me to my present plight. For several weeks I have been suffering lesions and unbearable pain. I do not sleep well and the muscle pain seems to worsen in my sleep. If I bump myself it feels like someone drove a nail threw me. My body is so tired I feel like I have run a marathon. I suffered spasms in my sleep and bit down so hard I shattered the molars on only one side of my mouth. This drove my teeth into my gums and tore the ligaments. The dentist cant fix anything till the bruising goes away. I really cant afford it anyway as the bill is very large. I think that is why God made Visa but even that only goes so far. I was in so much agony 2 weeks ago i was taking morphine , Tylenol (which I'm allergic to) robaxacet lorazapam and diazapam. I have  a sensitivity to drugs and i had to stop the lorazapam and diazapam because i was crying like a baby and having heart palpitations. Stopping these drugs without lessening dose actually cause worsening of muscle spasms and heart palpitations but I had no choice so as they say I just suck up even more pain and discomfort. Are you disgusted with this story yet cause believe it or not it does get better. On top of all I have suffered now I have been forced to be dishonest. I was on the internet doing research and 2 good things came of it. The first is I bought ketoconizole with my Visa haha. You might as well laugh cause I am still smiling. I am again having a miraculous recovery.  They are very expensive but I guess I could sell the pain killers to pay for them. Guess now I'm playing a different kind of Russian Roulette because now I wont be getting that liver function test I'm supposed to have because I cant tell my doctor what I have done. The second good thing that came out of this research is finding this site. I wanted to share my story in hopes that it will help someone else and not fall on deaf ears. There is something very wrong with our society as a whole and our medical system when doctors have learned the art of passing patients along instead of getting to the bottom of the problem.When you leave their office they don't have to give you a second thought. Its us that suffer or families and children suffer along with us. The honest woman from the country is now turned into a lie to survive, she lies to get a visa card , lies to her doctor. I'm sure God will forgive those who should really feel shame. Me I'm taking it day by day. I have spent the last 2 weeks being good to myself. I'm physically exhausted from the pain but I am feeling better. My lesions are dry and very small but everyone leaves another one of those black scars. I guess I wont be buying any mini skirts they don't really match my cowboy boots anyway.  This is my story as horrible as it is, it is all true. I have never shared it public-ally before all I hope to achieve by sharing what has and is happening to me is that someone who is feeling hopeless and down reads it and it gives them the strength to keep going and those who close their eyes and turn a blind eye should read the oath they took until they understand what it mean. Tomorrow is a new day and it can only get better if we look forward not back

Offline Lisa

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WOW I'm speechless after reading your story. You are one strong woman.

Offline Kat

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I'm shocked at what you've have endured and the manner that you've been treated. Thank you for sharing your story. You have overcome so much and yet still have this amazing sense of humour! It is just terrible what you've been through but I really hope all now goes well. I would just watch carefully for any liver problems.

My Mom was just told today that what was suspected as lung cancer was in fact, Blastomycosis. The Dr who removed part of her lung 3 weeks ago didn't have it formally checked but that's what he 'thinks' it is. Also, he wasn't the one to tell her this news. Instead she was told this today by a new Dr who had her first have an x-ray and took blood. After he told us, he asked about her health history and then told us that anti-fungal medication would be too hard on her liver as she has liver problems. He said he would schedule a CT scan to see if there are any indications that it's present anywhere else. From there he would suggest a course of action.

Her story is eerily similar to many here. She has had some serious health issues: had colon cancer back in 2010 but is now clear, suffers from Sjogren's and has had 2 minor heart attacks (has a stint now and is good) and has a bad liver and trouble with her pituitary gland. Back in the early Spring of 2012 she had a sharp pain in her lung, trouble breathing, diagnosed with pneumonia, put on antibiotics that made her symptoms worse, and then told her x-ray showed a 'spot'. It was not there in 2009.  She began having night sweats and fevers, felt ill and lost weight. So, they finally got her in and did a biopsy in Brandon, Mb, in November. Nothing was found that suggested cancer. Then 3 weeks later the same surgeon operated. The plan was - take a small bit out, rush and have it checked for cancer and if not closer her up and that would be that. The Surgeon though, saw it was an 'infection' and removed it. He didn't really explain what it was, only that he made a decision to remove it all.

Today this new Dr told her that the fungus had apparently been active, that today's x-ray looked clear and that he feels they probably are on top of it and got it all, but since she takes prednisone he is going to keep a close eye on it since that can make it worse (?)- hence the ct scan.
I had never heard of this. We live in WESTern Manitoba and she hasn't been anywhere near Ontario. the Spring of 2011 Souris had a huge flood and they lived right beside the river. They were evacuated but then after they moved back in, during the summer of 2011, huge machines came in and moved massive amounts of dirt around as they constructed a bern. It's just speculation because the area doesn't have the acidic soil it seems to prefer, but I wonder if this is where/how she inhaled the spores.

My worry is that if she doesn't take any anti-fungal medication that she's in for a very painful future. She says she feels much better now - although she has a bit of a cold and is coughing. No pain. She's 82 years old and has been weakened by this whole ordeal. It's both a comfort and a concern finding this forum. I'm scared of what this tiny living organism can do!!

One other thing. The new Doc wasn't impressed that the surgeon just 'thinks' that what it was. However, I see you can do a spit test and he never mentioned that! Why wouldn't he call for this test in order to get a definitive diagnosis?