Discussions By Condition: Medical Stories

I'm a freak

Posted In: Medical Stories 4 Replies
  • Posted By: lovemysonJ
  • September 10, 2008
  • 01:43 PM

I can't imagine anyone wanting to read about my health problems. I guess maybe it's just a good time to vent. I have been sick my whole life with what I call chronic multi-system dysfunction. Now I'm a 34 year old single parent of a 10 yeard old boy. It may sound dramatic but the truth is I know I'm dying. I can feel it. I keep going back and forth from denial, acceptance, anger, depression and back to denial again. I'm really angry at doctors right now for a lot of reasons. No one has ever figured out why I am so sick. They continuously treat my stmptoms instead of seeking the underlying cause. I've learned that unless you have something routine and treatable doctors will dismiss you. If referring you out to a specialist doesn't result in answers than they just give up.

I weighed 5lbs 2 oz at birth. Any type of formula made me projectile vomit. I dropped to under 5lbs when a nurse suggested to my mom that she try goat's milk. I tolerated it so that's what was in my bottles.

At ages 3 and 8 or somewhere around there I almost died from Giardia and Shigella. It was all down hill from there.

My childhood was filled with chronic bouts of pnuemonia, strep, ear infections, and I had the chicken pox 5 times. Yep, 5 times. The last time I had to be hospitalized and I don't know what they did but they finally got rid of it. I also had a chronic dry cough that lasted well over a year. My parents had to put books under my bed to keep me elevated so I could try to sleep. I also had the mumps and mono.

At 15 I was diagnosed with Endometriosis with my first period. I had two surgeries by the time I was 17.

At 19 I was diagnosed with polycystic ovarian disease, hyperinsulimia, insulin resistance, and high cholesterol. I responded well at first to the Metformin but then developed side effects.

At 20 I was hospitalized for an infection in my lower back. My WBC was over 21,000. They did all these gastro tests only to tell me that I had IBS but that IBS didn't explain the infection or the elevated WBC.

As I grew older I would get chronic throat infections, asthmatic bronchitis, pnuemaonia, ear infections, sinus infections, muscle aches, and fatigue. I was always that girl that missed alot of time from work. I was diagnosed with severe dry eye, eustatchian tube dysfunction, and Gerd.

Then I developed a problem with my lymphnode glands. The glands in my neck were swollen for more than 6 months. Doctors finally decided to biopsy one from my neck. It was swollen but negative.

By 28 I went downhill rapidly. I was hospitalized for an undiagnosed abdominal infection with an elevated WBC, a fever over 102, and a positive CT scan. The scan showed inflammation at the terminal illium and just inside my large intestine. It also showed swelling of a lymphnode in my abdomen. Again I went through alot of gastro tests. They ruled out Chron's and finally ended up telling me it wasn't a gastro problem. I ended up getting hospitalized for three more of these infections and they still remain undiagnosed. My Gyn did an exploratory laproscopy and ruled out a gyn problem. I also saw infectious disease doctors and a hematologist.

Then I developed tarsal tunnel syndrome and had to have surgery. My muscle aches turned into acute bone pain, joint pain, weakness, and nerve pain over my entire body. A Rhuematologist diagnosed me with Fibromyalgia but I didn't respond to treatment. Pool therapy made me worse. My current Rhuematologist diagnosed me with a condition called Enthesopathy. Apparently I have a problem with the Enthesis in my body. My muscles are like glass. I can move the wrong way and suffer a soft tissue injury. I became permanently disabled at the age of 29.

At some point I tried Metformin again but even at the highest dose my insulin was still too high. I was offered other less effective drugs that cause weight gain. My HDL has been too low and my LDL almost twice the normal limit for 15 years now. I have finally been put on a statin.

Last year I had to have emergency surgey because my gallbladder was acutely inflammed.

For the last three years my body has continued to deteriorate. I get injections of prolotherapy all over my body just so I can maintain normal functioning. I have excessive hair growth evident by ingrown hairs all through my bikini line and now in my breasts. My WBC is always elevated. I have night sweats. I sleep with my window open in the winter time but that doesn't help. Now I have morning sweats as well. I can't have my morning coffee without sweating like a pig. I always have abdominal pain and my abdomen is tender to touch everywhere. Everyday I am sick. I get headaches, nausea, fatigue, and sometimes just a general ill feeling. I have pain in my whole body, not just in my muscles and bones, but inside. It feels like pain in all of my organs. I get chest pressure and chest pain. Sometimes I get bouts of dizziness and lightheadedness. If I do anything like go to the grocery store I come home exhausted and need to lay down.

Three weeks ago I had finished my morning coffee at around 7:30 am. A little after 9am I was hit like a brick wall with the most incredible urge to vomit. It was a very odd sensation because I wasn't nauseous and I felt no urge to run to the bathroom. At the same time I started to pass out. I almost passed out three times. I drank a glass of OJ just in case it was my sugar even though I'm not hypoglcemic and had had coffee. Eventually the passing out stopped but the urge to vomit remained. Then I developed a headache in the right side of my head. You could literally draw a line through the center of my head. I also developed a vision problem in my left eye. It was really weird. There was like this transparent line through the center of my eye. In the middle of the line was double vision and the line kept shaking rapidly. I ended up laying on the couch with my eyes closed for five hours. Finally the symptoms disappeared and I was left feeling weak and tired. My doc ordered a head CT and that was negative. My bloodwork showed a WBC of 14.8 and an elevated hematocrit. Six months ago my WBC was 12.5 and my Hematocrit was elevated then too. Like I said, my WBC is always elevated. I been checking my sugar regularly and it is always normal. I checked after a 12 hour fast and it was normal. I checked it two hours after having coffee and it was normal. So maybe it was just a freak sugar thing because I am a freak afterall.

I did make an appointment with my endocrinologist. I have a lot of questions. Why do I have hyperinsulimia and insulin resistance? Could the chronic high levels of insulin in my bloodstream be wreaking havoc on my body?

I saw the Hematologist for the second time yesterday. He is testing me more agressively this time around. I have to have a CT scan of my chest, abdomen, and pelvis. He did bloodwork and it wasn't outrageous but also not normal as usual. My WBC is elevated. My hematocrit is normal this time. My platelets are elevated and my MPV slightly lower than normal. My BA, MO, and EO are all elevated though I can't say significantly. The Hematologist discussed with me about having a bone marrow biopsy. We're going to discuss it more after my CT scans.

I want answers. I want to get better. I'm tired of being sick. It's weird because it's like I hope for a diagnosis, no matter how bad, so that maybe I can get treatment and get better. My son grows up with a mom who needs to lay down everyday. I haven't had a boyfriend in six years because a boyfriend would want to do things and I'm just not well enough. On those rare days when I have a little energy and don't feel too sick I spend quality time with my son. I find myself trying to teach him as much as possible.

Lastly, I want to talk about irony. For years now I have been so sick and tired of being sick, having bloodwork and tests, that I have blown off doctor's appointments and my blood work. With my gallbladder I had severe pain in the upper most center of my abdomen. The pain radiated into my chest. I didn't know if I was having a heart attack or not. Yet I sat on my couch in this severe pain for 4 hours before I called my mom. With what happen a few weeks ago with the passing out and headache and vision and such I didn't call an ambulance. I didn't even call my doctor. It was just like, ok something is happening to me and I'll get through it. It was my friend who nagged me to death about going to the doctor's the next day. I realize now that my behavior is stupid. But my point is irony because so many times I have had doctors treat me like I'm some kind of hypochondriac instead of the sick person I really am.

So that's my story.

Reply Flag this Discussion

4 Replies:

  • First things first your not a freak just the things that are happening to you are and yes there are people out there interested in your story. Hi I am 27 and I live in Australia. I am married to a very loving, caring and patient man for 5 years. We have no children yet but will love to sometime soon. I too have suffered from some not all the troubles you have. I’ll fill you in on some of our similarities. I too have been sick all my life, but being brought up in the family environment I was born into I put a lot of my illness down to thinking it was normal and never thought anything of it until after I got married and my health got worse. Also doesn’t help having parents believing you were just lazy or put it on. My Mum and Dad’s quote to my husband after we were married “oh she just needs pushing”. Frustrating to say the lest and more so at that time. Why I’ll fill you in on that later.To tell you the truth I am right up there with you on the hating doctors part. I’ve lost count myself on how many specialist and doctors I have seen.When I was a baby I too was born healthy but I never was a big eater so I never put weight on enough and mum just stopped taking me to the nurses when they thought I wasn’t getting big enough. Mum just thought I was always going to be a small child. Later I lost all apatite and she was told I had become lactose intolerant and I was put onto soy milk. I don’t know how long I was on it for because I came back off the soy and went back onto the milk and haven’t shown signs of being lactose intolerant. Weird.I would come down with the cold and flu on a regular basis but thank goodness didn’t come down with all the other things you did as a child or though I did get Chicken pox twice. One thing that stood out to me was that you said you had trouble with your lymph node glands. I had trouble with all my lymph node glands all over my body as a young child. I would say from the age of 3 to the age of 6 I had enlarged lymph node glands. Doctors couldn’t explain it. Mum at lest picked up on that as it would hurt for someone to hug me and even took me to a naturopath when the doctors didn’t know anything. I don’t believe the doctors did a biopsy on them. I was constantly taken to the doctors to have them tell my mum there was nothing wrong with me. No wonder my parents believe it was a put on or all in my head. =(At 15 I too was diagnosed with polycystic ovarian disease. All doctors did for that was put me on the pill.When I hit 20 my colds and flus would get worse. Everything was green, green, green even the sleep in my eyes were green. How many times I was put onto antibiotics I couldn’t tell.21 I was working and the computer and register in front of me begin to split into 2 on me. I worked for 30mins more until I believed that it wasn’t going away and it was getting worse. Thankfully I worked in a pharmacy which was also had a medical center and nursing station in side the same building. I saw the pharmacist and as soon as I sat down I started to loose feeling in my fingers. It was become scary. He called a nurse to have a look at me and also got me into the doctor but ether one of them couldn’t work it out what was wrong apart from my sugars been a bit low. So they gave me jellybeans and also told me it could have been a migraine which I got on a regular basis. I even got them so bad I couldn’t walk or talk and I couldn’t stop being sick. Horrible things. Wouldn’t wish them on my worsest enemy. Just before I got married I got so sick and I couldn’t stop coughing. In the end I coughed so much I broke my ribs. And yes soon after that I got married. That was when my parents gave my husband the wonderful advice or quote I called it. Because at that time we didn’t know I had broken my ribs and the extreme pain I was in wasn’t explained. It wasn’t until I broke it the second time that I had a bone scan done that they did find it. And guess what I broke it again after that again by getting sick again and coughing it. Yeah!!!!The tiredness and the constant pain in my body was getting too much and my husband always loves to research things. He would come up with an idea and then we go off to the doctors and we would only get told I have chronic fatigue and Fibromyalgia. This frustrated us more because we knew that wasn’t telling us what my problem was because chronic fatigue and fibromyalgia are just symptoms of so many different things from viral or psychological or even a physical trauma (which I have had all of the above).One of my husband’s friends from work has a sick wife as well and he suggested for us to go and see a guy that runs his own sports injury clinic. He treats a lot of our professional football players and many professional athletes. He was the one to suggest to get my insulin cheeked out. And sure enough I have hyperinsulimia, insulin resistance. Later I get told that hyperinsulimia, insulin resistance and polycystic ovarian disease go hand in hand. I have been put onto Metformin but don’t really know if it’s making much of a difference.I don’t know I really believe that if a lot of our troubles come from having too much insulin you would think doctors and specialist would take a closer look at our pancreas. Have you looked at a picture of the pancreas? Would you believe it has this thing called a gall bladder attached to it and yes the pancreas is attached to what oh yes the beginning of the intestines? I honestly believe that our lives would have some kind of normality if we only had a healthy pancreas transplanted in to us. How long will doctors just keep circling around the problem? What I find difficult is that I have meet so many with hyperinsulimia, insulin resistance and polycystic ovarian disease including both my sister in-laws. Why is this not getting a better look at. Any way that is my vent. Thank you for your story. I hope one day in the near future we will be given an answer and a cure.
    Anonymous 42789 Replies
    • September 23, 2008
    • 03:21 PM
    • 0
    Flag this Response
  • ( Yes High Insulin Levels can cause havoc in your body )polycystic ovarian syndrome! Is caused by ( High insulin levels ) When insulin levels are high ( It increases testosterone )Thus high insulin levels promote testosterone levels ( Which the high insulin than causes higher testosterone levels in females causes the cysts and growths in the ovaries! ( High Testosterone levels in Poly Cystic Ovarian Syndrome )Can cause your hair growth!The majority of your ( Anxiety , Night Sweats , Anger , Depression ) are all low blood sugar problems .( High Insulin Causes ( Poly Cystic Ovayarian Syndrome ) So high insulin causes blood sugar crashes .When blood sugar lowers . ( Cortisol / Adreneline Increase ) Both cause depression , anxiety anger!( Cafiene directly increases cortisol! ) Stay away from all cafiene!Cortisol heavily weakens the immune system! Explains the infections .Cortisol also breaks done both bone and muscle ( Muscle aches , Bone Problems )Also Cortisol causes ( Hair Growth ) In woman . ( Cortisol can also cause insulin resistance which in return increases insulin ( Poly cystic Ovayarian Syndrome / Lower blood sugar ) Increases more insulin)Vicious cycle!Poly Cystic Ovarian Syndrome must be ***l ( I am a male ) But i can imagine it must be ***l .I am surprized you gave birth! Generally people with Poly Cystic Ovarian symdrome have trouble giving birth .You have all the symptoms of Exessive Coritsol!I hope they have not put you on cortizone shots? / meds . Doctors are such **** heads . They will often prescribe things that make problems worse!Coritizone meds! Increase cortisol! ( Make everything worse) I Suggest trying ( Natural Methods ) To lower your cortisol .Herbals .Ashwanganda , Gingseng , ( Try High Dose Vitamin C ) ( Take a vitamin b complex) Both Vitamins C + B! All lower cortisol! Lower stress! Increase immune system!( I have not gone to the doctors in 3 years! I have not even gotten a simple cold in 3 years! ) During the last 3 years!?I take Vitamin C / B supps Plus Ginseng! Others too! I never get colds anymore!I used to have constant cronic sinus infections ( About 10 colds a year ) about 3 strep throats a year )NOW NOTHING! Nothing for 3 years!I suggest you take a supplement called ( Inositol ) That is your first choice you should try!It helps treat ( Poly Cystic Ovarian Syndrome ) Improves insulin / cortisol .Inositol ( Improves mood , It lowers anxiety ) It is a vitamin! It helps people with bi polar disorder! Depression ! Anxiety!( Cafiene Also lowers Inositol!!!!!!!!!!!!!!!)As does ( prozac ) Bastards! Doctors can be real **** heads!I have had alot of the same problems as you ( I have the night sweats , bone pain problems , muscle problems , anxiety , anger , Insulin problems , blood sugar problems ) I have sensitivity to cafiene too!I just do not go to the doctors!I have not been sick since i have gone to the ****ing doctors! **** them! Seriously! Unless you are dying!Stay the **** away from doctors!Also are you post traumatic stress? Did your parents have post traumatic stress disorder? Perhaps a parent in a war battle?Perhaps a parent with diabeties ( Esp during pregnancy with you?)These are a few things which could explain your ( Early life term problems )I have post traumatic stress disorder ( Well i did )I was raped , beat down and had guns and knives put up to be my friend at a young age After this i got non stop infections!Weight gain!Major problems . ( I had about a 2 year period of non stop infections and disease )Than they put me on anti pyschotics ( I was flipping out )They made my infections worse ( Again doctors are bastards !)than from there on i had extreme weight gain / insulin problems I am doing alot better now ( No more infections , ALmost no stress )How ever i get alot of fibro mylgia type ( Bone / Muscle pain along with head aches ) But i am in good health ( Never get sick )
    thefineline 1 Replies
    • December 21, 2008
    • 08:05 PM
    • 0
    Flag this Response
  • Hi Lovemysonj, http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=141 Come on over to the b12 deficiency forum. I have a whole new life at 60. My life used to be like yours going from one health crisis to another. Not any more. I used to have pneumonias frequently. Not any more. I am genuinely healthy for the first time in my life. We have a reasonably complete symptoms list, check it out.
    Freddd 3576 Replies
    • December 23, 2008
    • 10:36 PM
    • 0
    Flag this Response
  • I can't imagine anyone wanting to read about my health problems. I guess maybe it's just a good time to vent. I have been sick my whole life with what I call chronic multi-system dysfunction. Now I'm a 34 year old single parent of a 10 yeard old boy. It may sound dramatic but the truth is I know I'm dying. I can feel it. I keep going back and forth from denial, acceptance, anger, depression and back to denial again. I'm really angry at doctors right now for a lot of reasons. No one has ever figured out why I am so sick. They continuously treat my stmptoms instead of seeking the underlying cause. I've learned that unless you have something routine and treatable doctors will dismiss you. If referring you out to a specialist doesn't result in answers than they just give up. I weighed 5lbs 2 oz at birth. Any type of formula made me projectile vomit. I dropped to under 5lbs when a nurse suggested to my mom that she try goat's milk. I tolerated it so that's what was in my bottles. At ages 3 and 8 or somewhere around there I almost died from Giardia and Shigella. It was all down hill from there. My childhood was filled with chronic bouts of pnuemonia, strep, ear infections, and I had the chicken pox 5 times. Yep, 5 times. The last time I had to be hospitalized and I don't know what they did but they finally got rid of it. I also had a chronic dry cough that lasted well over a year. My parents had to put books under my bed to keep me elevated so I could try to sleep. I also had the mumps and mono. At 15 I was diagnosed with Endometriosis with my first period. I had two surgeries by the time I was 17. At 19 I was diagnosed with polycystic ovarian disease, hyperinsulimia, insulin resistance, and high cholesterol. I responded well at first to the Metformin but then developed side effects. At 20 I was hospitalized for an infection in my lower back. My WBC was over 21,000. They did all these gastro tests only to tell me that I had IBS but that IBS didn't explain the infection or the elevated WBC. As I grew older I would get chronic throat infections, asthmatic bronchitis, pnuemaonia, ear infections, sinus infections, muscle aches, and fatigue. I was always that girl that missed alot of time from work. I was diagnosed with severe dry eye, eustatchian tube dysfunction, and Gerd. Then I developed a problem with my lymphnode glands. The glands in my neck were swollen for more than 6 months. Doctors finally decided to biopsy one from my neck. It was swollen but negative. By 28 I went downhill rapidly. I was hospitalized for an undiagnosed abdominal infection with an elevated WBC, a fever over 102, and a positive CT scan. The scan showed inflammation at the terminal illium and just inside my large intestine. It also showed swelling of a lymphnode in my abdomen. Again I went through alot of gastro tests. They ruled out Chron's and finally ended up telling me it wasn't a gastro problem. I ended up getting hospitalized for three more of these infections and they still remain undiagnosed. My Gyn did an exploratory laproscopy and ruled out a gyn problem. I also saw infectious disease doctors and a hematologist. Then I developed tarsal tunnel syndrome and had to have surgery. My muscle aches turned into acute bone pain, joint pain, weakness, and nerve pain over my entire body. A Rhuematologist diagnosed me with Fibromyalgia but I didn't respond to treatment. Pool therapy made me worse. My current Rhuematologist diagnosed me with a condition called Enthesopathy. Apparently I have a problem with the Enthesis in my body. My muscles are like glass. I can move the wrong way and suffer a soft tissue injury. I became permanently disabled at the age of 29. At some point I tried Metformin again but even at the highest dose my insulin was still too high. I was offered other less effective drugs that cause weight gain. My HDL has been too low and my LDL almost twice the normal limit for 15 years now. I have finally been put on a statin. Last year I had to have emergency surgey because my gallbladder was acutely inflammed. For the last three years my body has continued to deteriorate. I get injections of prolotherapy all over my body just so I can maintain normal functioning. I have excessive hair growth evident by ingrown hairs all through my bikini line and now in my breasts. My WBC is always elevated. I have night sweats. I sleep with my window open in the winter time but that doesn't help. Now I have morning sweats as well. I can't have my morning coffee without sweating like a pig. I always have abdominal pain and my abdomen is tender to touch everywhere. Everyday I am sick. I get headaches, nausea, fatigue, and sometimes just a general ill feeling. I have pain in my whole body, not just in my muscles and bones, but inside. It feels like pain in all of my organs. I get chest pressure and chest pain. Sometimes I get bouts of dizziness and lightheadedness. If I do anything like go to the grocery store I come home exhausted and need to lay down. Three weeks ago I had finished my morning coffee at around 7:30 am. A little after 9am I was hit like a brick wall with the most incredible urge to vomit. It was a very odd sensation because I wasn't nauseous and I felt no urge to run to the bathroom. At the same time I started to pass out. I almost passed out three times. I drank a glass of OJ just in case it was my sugar even though I'm not hypoglcemic and had had coffee. Eventually the passing out stopped but the urge to vomit remained. Then I developed a headache in the right side of my head. You could literally draw a line through the center of my head. I also developed a vision problem in my left eye. It was really weird. There was like this transparent line through the center of my eye. In the middle of the line was double vision and the line kept shaking rapidly. I ended up laying on the couch with my eyes closed for five hours. Finally the symptoms disappeared and I was left feeling weak and tired. My doc ordered a head CT and that was negative. My bloodwork showed a WBC of 14.8 and an elevated hematocrit. Six months ago my WBC was 12.5 and my Hematocrit was elevated then too. Like I said, my WBC is always elevated. I been checking my sugar regularly and it is always normal. I checked after a 12 hour fast and it was normal. I checked it two hours after having coffee and it was normal. So maybe it was just a freak sugar thing because I am a freak afterall. I did make an appointment with my endocrinologist. I have a lot of questions. Why do I have hyperinsulimia and insulin resistance? Could the chronic high levels of insulin in my bloodstream be wreaking havoc on my body? I saw the Hematologist for the second time yesterday. He is testing me more agressively this time around. I have to have a CT scan of my chest, abdomen, and pelvis. He did bloodwork and it wasn't outrageous but also not normal as usual. My WBC is elevated. My hematocrit is normal this time. My platelets are elevated and my MPV slightly lower than normal. My BA, MO, and EO are all elevated though I can't say significantly. The Hematologist discussed with me about having a bone marrow biopsy. We're going to discuss it more after my CT scans. I want answers. I want to get better. I'm tired of being sick. It's weird because it's like I hope for a diagnosis, no matter how bad, so that maybe I can get treatment and get better. My son grows up with a mom who needs to lay down everyday. I haven't had a boyfriend in six years because a boyfriend would want to do things and I'm just not well enough. On those rare days when I have a little energy and don't feel too sick I spend quality time with my son. I find myself trying to teach him as much as possible. Lastly, I want to talk about irony. For years now I have been so sick and tired of being sick, having bloodwork and tests, that I have blown off doctor's appointments and my blood work. With my gallbladder I had severe pain in the upper most center of my abdomen. The pain radiated into my chest. I didn't know if I was having a heart attack or not. Yet I sat on my couch in this severe pain for 4 hours before I called my mom. With what happen a few weeks ago with the passing out and headache and vision and such I didn't call an ambulance. I didn't even call my doctor. It was just like, ok something is happening to me and I'll get through it. It was my friend who nagged me to death about going to the doctor's the next day. I realize now that my behavior is stupid. But my point is irony because so many times I have had doctors treat me like I'm some kind of hypochondriac instead of the sick person I really am. So that's my story.How are you doing? I hope better?
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.