Discussions By Condition: I cannot get a diagnosis.

over 8 years and no diagnosis HELP!

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • October 15, 2009
  • 09:40 PM

I believe my symptoms started around age 8. Over a two year span I was seen by numerous doctors for knee pain (joint pain) and headaches. The only explanation my parents were given was growing pains.

At age 11 I was out of school for 5-6 weeks due to mono

All though high school I suffered from chronic fatigue, back pain, and it seemed that I was always sick. Although I have always been extremely smart, during high school I started noticing I was unable to focus on anything and often felt very ditsy. I was treated for depression and frequent UTIs. I don’t recall any other testing.

At age 17 I became pregnant with my oldest child on birth control. During pregnancy, I felt somewhat more energized and I was able to stay organized and had drive and energy to live life. Aside from typical pregnancy symptoms I felt somewhat normal.

Shortly after giving birth to my son, my symptoms came back tenfold. I started to experience extreme pain in my back and all over weakness and fatigue. After running some basic blood work I was diagnosed with Fibromyalgia and continued to have frequent UTIs. I was given narcotic pain meds and anti depression medication to help with my symptoms but nothing ever helped. This continued for a couple years. I was unable to hold a job due to my daily struggles. My husband at the time was very unsupportive and told me that it was all in my head and that I needed to snap out of it and stop being lazy, which led to divorce.

While pregnant with my second child, again I felt much better.

Now 8 years after my diagnosis of Fibromyalgia I am taking a turn for the worse. My body is failing me more every day and I still have little answered. My ANA levels were abnormal in 2008 but now they are normal ruling out lupus, my Epstein Barr is positive, and my thyroid levels are normal.

Symptoms:
Fatigue
Joint Pain
Head Aches and migraines
Kidney pain
Frequent UTIs and other infections
Muscle Weakness
Low blood pressure
Sleeping 12-17 hours per day
Vision issues (delayed focus, twitching sensation)
Easily bruised
Sinus Pressure and face and jaw pain
Bloody mucus out of my nose dries and is very painful
Occasional rash (small scaly bumps over face and chest)
Memory Loss
Brain Fog
Slow speech (sometimes even slurred)
Dizzy
Black out upon standing
Sensitivity to cold

New Symptoms:
Pressure and Discomfort on lower left side of my neck with some swelling
Worsened headaches that never seem to go away
Worsened joint pain so severe that I have to wrap wrists and ankles with ace bandages for days at a time.
Loss of urine. I have actually peed my pants two times this week! And I am 26! I just got a sudden urge to go and didn’t make it in time. I couldn’t control it at all! Yuck!

I have been made to feel like I am crazy by my doctors and if it were not for my very supportive husband (married 2 years ago) I don’t know how I could even make it through a day.

My husband and I are very frustrated and on top of it all unable to get insurance due to pre existing conditions. So not only do the doctors think we are crazy but now they don’t want to treat me because I am not insured.

Our thoughts original following these new symptoms and the fact that i feel better during pregnancy were Thyroid disorder. But my doctor is saying that my thyroid levels are normal. When the Epstein Barr test came back positive it was a relief, hoping that it would explain all of my symptoms, but are finding that most of my symptoms don’t make sense. As bad as I want it to be something simple my heart tells me that it is not. After researching Epstein Barr, I have found that it is linked to some cancers such as nasopharyngeal cancer and other diseases. With Epstein Barr being the only thing I can go on or the only test that has some back positive I feel like this is the best place to start.

My question is with all the testing that they have done on my over the last decade wouldn’t some form of cancer been caught?

Why do I still not have a solid diagnosis?

Why do the doctors make me feel like I am crazy?

If anyone has any suggestions on what might be going on or any experiences you would like to share please post something. My husband and I are very frustrated and see no light at the end of this tunnel. I can’t continue to live my life from the couch.
Thank you for any help you can offer!

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10 Replies:

  • I believe my symptoms started around age 8. Over a two year span I was seen by numerous doctors for knee pain (joint pain) and headaches. The only explanation my parents were given was growing pains. At age 11 I was out of school for 5-6 weeks due to monoAll though high school I suffered from chronic fatigue, back pain, and it seemed that I was always sick. Although I have always been extremely smart, during high school I started noticing I was unable to focus on anything and often felt very ditsy. I was treated for depression and frequent UTIs. I don’t recall any other testing. At age 17 I became pregnant with my oldest child on birth control. During pregnancy, I felt somewhat more energized and I was able to stay organized and had drive and energy to live life. Aside from typical pregnancy symptoms I felt somewhat normal. Shortly after giving birth to my son, my symptoms came back tenfold. I started to experience extreme pain in my back and all over weakness and fatigue. After running some basic blood work I was diagnosed with Fibromyalgia and continued to have frequent UTIs. I was given narcotic pain meds and anti depression medication to help with my symptoms but nothing ever helped. This continued for a couple years. I was unable to hold a job due to my daily struggles. My husband at the time was very unsupportive and told me that it was all in my head and that I needed to snap out of it and stop being lazy, which led to divorce. While pregnant with my second child, again I felt much better. Now 8 years after my diagnosis of Fibromyalgia I am taking a turn for the worse. My body is failing me more every day and I still have little answered. My ANA levels were abnormal in 2008 but now they are normal ruling out lupus, my Epstein Barr is positive, and my thyroid levels are normal. Symptoms:FatigueJoint PainHead Aches and migrainesKidney painFrequent UTIs and other infectionsMuscle WeaknessLow blood pressureSleeping 12-17 hours per dayVision issues (delayed focus, twitching sensation)Easily bruisedSinus Pressure and face and jaw painBloody mucus out of my nose dries and is very painfulOccasional rash (small scaly bumps over face and chest)Memory LossBrain FogSlow speech (sometimes even slurred) DizzyBlack out upon standingSensitivity to coldNew Symptoms:Pressure and Discomfort on lower left side of my neck with some swellingWorsened headaches that never seem to go awayWorsened joint pain so severe that I have to wrap wrists and ankles with ace bandages for days at a time.Loss of urine. I have actually peed my pants two times this week! And I am 26! I just got a sudden urge to go and didn’t make it in time. I couldn’t control it at all! Yuck!I have been made to feel like I am crazy by my doctors and if it were not for my very supportive husband (married 2 years ago) I don’t know how I could even make it through a day. My husband and I are very frustrated and on top of it all unable to get insurance due to pre existing conditions. So not only do the doctors think we are crazy but now they don’t want to treat me because I am not insured. Our thoughts original following these new symptoms and the fact that i feel better during pregnancy were Thyroid disorder. But my doctor is saying that my thyroid levels are normal. When the Epstein Barr test came back positive it was a relief, hoping that it would explain all of my symptoms, but are finding that most of my symptoms don’t make sense. As bad as I want it to be something simple my heart tells me that it is not. After researching Epstein Barr, I have found that it is linked to some cancers such as nasopharyngeal cancer and other diseases. With Epstein Barr being the only thing I can go on or the only test that has some back positive I feel like this is the best place to start. My question is with all the testing that they have done on my over the last decade wouldn’t some form of cancer been caught?Why do I still not have a solid diagnosis?Why do the doctors make me feel like I am crazy?If anyone has any suggestions on what might be going on or any experiences you would like to share please post something. My husband and I are very frustrated and see no light at the end of this tunnel. I can’t continue to live my life from the couch. Thank you for any help you can offer!Have you been tested for adrenal problems? Look into Addison's or cushings or Conn's. I would see an endocronoligist. I have had a lot of the same symptoms, except my blood pressure is high and uncontrollable with meds, and I am done waiting on doctors I have been researching myself and found adrenal problems might be it, although it is a 2 month wait to see an endocronoligist, I am sick of waiting!!! Good luck!Bridget
    Anonymous 42789 Replies
    • October 16, 2009
    • 03:13 PM
    • 0
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  • Have you been tested for adrenal problems? Look into Addison's or cushings or Conn's. I would see an endocronoligist. I have had a lot of the same symptoms, except my blood pressure is high and uncontrollable with meds, and I am done waiting on doctors I have been researching myself and found adrenal problems might be it, although it is a 2 month wait to see an endocronoligist, I am sick of waiting!!! Good luck!BridgetIt does sound like a hormone problem. Adrenal surplus or deficit, also pituatary disorders have many of the same symptoms-----but u don't have to go to an endocronoligist to get tested. Go to any doctor and ask to have your cortisol levels tested. Must fast for 9-12 hours and get it done around 8:00 am when levels are highest and again at 4:00pm (non fasting) when they should be at their lowest. If there is a problem, your doctor will make an appointment for you with an endocronoligist. Good luck.Kirby
    Anonymous 42789 Replies
    • October 17, 2009
    • 00:07 AM
    • 0
    Flag this Response
  • Have you been tested for adrenal problems? Look into Addison's or cushings or Conn's. I would see an endocronoligist. I have had a lot of the same symptoms, except my blood pressure is high and uncontrollable with meds, and I am done waiting on doctors I have been researching myself and found adrenal problems might be it, although it is a 2 month wait to see an endocronoligist, I am sick of waiting!!! Good luck!Bridget They have tested my thyroid levels.
    Anonymous 42789 Replies
    • October 18, 2009
    • 03:05 PM
    • 0
    Flag this Response
  • It does sound like a hormone problem. Adrenal surplus or deficit, also pituatary disorders have many of the same symptoms-----but u don't have to go to an endocronoligist to get tested. Go to any doctor and ask to have your cortisol levels tested. Must fast for 9-12 hours and get it done around 8:00 am when levels are highest and again at 4:00pm (non fasting) when they should be at their lowest. If there is a problem, your doctor will make an appointment for you with an endocronoligist. Good luck.Kirby Thank you. I will look into this when Isee my dr this week!
    Anonymous 42789 Replies
    • October 18, 2009
    • 03:07 PM
    • 0
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  • Could be an autoimmune problem - self attacking self and might be worth getting your doctor to do a blood test to check you out for auto immune antibodies.Good luck.
    maggiemay 68 Replies
    • October 18, 2009
    • 10:56 PM
    • 0
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  • Could be an autoimmune problem - self attacking self and might be worth getting your doctor to do a blood test to check you out for auto immune antibodies.Good luck.My ANA was Negative lat month when they tested it. MONOCYTE 11 STATED TO BE HIGHhere are my epstein barr test results. I dont know what they mean yet but . . EBV NUC Ab > 8.0EBV EAD Ab 8.0EBV VCA Igm 0.9Other Tests:CBC Value Referencewhite count: 6.8 4.0-10.0 K/uLred blood count 5.22 H 4.20-5.20 M/uLHemoglobin 16.2 H 12.0-16.0 g/dLSodium 142Potassium 3.8chloride 105carbon dioxide level 30calcium 9.4glucose 88blood urea nitrogen 11Creatinine 0.76bun/creatinine ratio 14.5glomerular filtration rate 93glomerular filtration rate AA 112TSH 1.946FREE T4 .09FREE T3 3.5B12 589THYROID ULTRASOUNDSMALL NODULE FOUND ON BOTH SIDES OF THYROID ONE IS 4.6X6X7.7 MM AND THE OTHER IS 4.9X7RADIOLOGIST SUGGESTS THAT I HAVE ANOTHER ULTRASOUND IN 6 MONTHS TO SEE IF THERE IS ANY CHANGES. OTHER THAN THAT NOTHING. ANY THOUGHTS?
    Anonymous 42789 Replies
    • October 20, 2009
    • 04:40 AM
    • 0
    Flag this Response
  • I believe my symptoms started around age 8. Over a two year span I was seen by numerous doctors for knee pain (joint pain) and headaches. The only explanation my parents were given was growing pains. At age 11 I was out of school for 5-6 weeks due to monoAll though high school I suffered from chronic fatigue, back pain, and it seemed that I was always sick. Although I have always been extremely smart, during high school I started noticing I was unable to focus on anything and often felt very ditsy. I was treated for depression and frequent UTIs. I don’t recall any other testing. At age 17 I became pregnant with my oldest child on birth control. During pregnancy, I felt somewhat more energized and I was able to stay organized and had drive and energy to live life. Aside from typical pregnancy symptoms I felt somewhat normal. Shortly after giving birth to my son, my symptoms came back tenfold. I started to experience extreme pain in my back and all over weakness and fatigue. After running some basic blood work I was diagnosed with Fibromyalgia and continued to have frequent UTIs. I was given narcotic pain meds and anti depression medication to help with my symptoms but nothing ever helped. This continued for a couple years. I was unable to hold a job due to my daily struggles. My husband at the time was very unsupportive and told me that it was all in my head and that I needed to snap out of it and stop being lazy, which led to divorce. While pregnant with my second child, again I felt much better. Now 8 years after my diagnosis of Fibromyalgia I am taking a turn for the worse. My body is failing me more every day and I still have little answered. My ANA levels were abnormal in 2008 but now they are normal ruling out lupus, my Epstein Barr is positive, and my thyroid levels are normal. Symptoms:FatigueJoint PainHead Aches and migrainesKidney painFrequent UTIs and other infectionsMuscle WeaknessLow blood pressureSleeping 12-17 hours per dayVision issues (delayed focus, twitching sensation)Easily bruisedSinus Pressure and face and jaw painBloody mucus out of my nose dries and is very painfulOccasional rash (small scaly bumps over face and chest)Memory LossBrain FogSlow speech (sometimes even slurred) DizzyBlack out upon standingSensitivity to coldNew Symptoms:Pressure and Discomfort on lower left side of my neck with some swellingWorsened headaches that never seem to go awayWorsened joint pain so severe that I have to wrap wrists and ankles with ace bandages for days at a time.Loss of urine. I have actually peed my pants two times this week! And I am 26! I just got a sudden urge to go and didn’t make it in time. I couldn’t control it at all! Yuck!I have been made to feel like I am crazy by my doctors and if it were not for my very supportive husband (married 2 years ago) I don’t know how I could even make it through a day. My husband and I are very frustrated and on top of it all unable to get insurance due to pre existing conditions. So not only do the doctors think we are crazy but now they don’t want to treat me because I am not insured. Our thoughts original following these new symptoms and the fact that i feel better during pregnancy were Thyroid disorder. But my doctor is saying that my thyroid levels are normal. When the Epstein Barr test came back positive it was a relief, hoping that it would explain all of my symptoms, but are finding that most of my symptoms don’t make sense. As bad as I want it to be something simple my heart tells me that it is not. After researching Epstein Barr, I have found that it is linked to some cancers such as nasopharyngeal cancer and other diseases. With Epstein Barr being the only thing I can go on or the only test that has some back positive I feel like this is the best place to start. My question is with all the testing that they have done on my over the last decade wouldn’t some form of cancer been caught?Why do I still not have a solid diagnosis?Why do the doctors make me feel like I am crazy?If anyone has any suggestions on what might be going on or any experiences you would like to share please post something. My husband and I are very frustrated and see no light at the end of this tunnel. I can’t continue to live my life from the couch. Thank you for any help you can offer!Hello! OK, so I didnt even finish reading your thread. Its seriously sounds to me that you may need to go to a urologist. Alot of your symptoms sound kinda like mine. Your aniemic obviously. This can lead to heavy periods. You do need to drink lots of water. Make sure youve had a recent pap and maybe inquire if your uterous is enlarged, or just whats up. I dont really think it is hormones. Anytime you have kidney pain it needs to be checked out.Is the pain in the kidney have you on the floor or does it just feel like you got hit by a two by four? You have a lot of misleading symptoms. You must persue the bladder incontinence never take it for granted that this is normal. People tend to grown into things and think nothing is wrong. If you start getting unidentified infections that require antibiotics and have had a low grade fever, just above normal for a period of time thats not even good. Just being aniemic will make you tired, feel out of shape, more emotional and you can even have heart palpatations, legs feel heavy and some idiot could tell you, you have fibromyalgia. I havent read to much about it, I could have it. But I think my doc says that because he cant identify what the sourse is. I cant spell. but usually I can. What I most likely have is a recurrance of bladder cancer or fibroid cyst that are out of control and or detiroating. Really I can spell. The only other suggestion is play Dr.House. Take a piece of paper and write everything down like he would and anything you dont really think is a symptom, it could be. Like I have the opposite of restless leg syndrone ? I do have trouble sleeping but its because my husband is 6ft 2 and wakes me up moving around after about four hours of sleep. I have an internal alarm, mess it up and no sleep till I readjust, this is not the change of life for example. Im going to read your thread again just incase so this dosent sound so stupid. But go to a urologist. Because of the insurance go to a catholic hospital they have to treat you and the bill can go to collection or they do have whats called bridge assistance that will pay 100% of your bill.
    sodomojo44 1 Replies
    • October 20, 2009
    • 08:50 AM
    • 0
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  • Lyme Disease......it is often misdiagnosed as mono and I believe in my case, (as I have tested CDC positive for Lyme) my Lyme actually took control after mono weakened my immune system. Lyme disease has been misdiagnosed as Mono, MS, Lupus, Parkinson's disease, ALS, fibromyalgia and Alzheimer's. It is often a neurodegenerative disease when it gets to late-state undiagnosed, but it can be treated although it is more difficult to treat in this stage.You need to watch the movie, "Under Our Skin," and read the book, "Cure Unknown," which I just found on line under Google Books so you can read it on line.I also had mono, UTIs, then severe joint pain in both hands and feet with burning pain and swelling. My hands and feet were and still get hot and red as I am just now being treated for Lyme. I also had severe brain fog, memory loss, bad cramping in my muscles, headaches, hormonal imbalances, the list is endless and ridiculous. I recommend you visit ILADS.org as well as Turnthecorner.org. There is dispute about the percentage of people who actually get a rash with Lyme as well as remembering a tick bite but both sides of the controversy agree that not everyone gets or sees the rash or the tick bite. Some people are diagnosed after 20 or more years of having symptoms. Good Luck!
    Anonymous 42789 Replies
    • October 20, 2009
    • 02:59 PM
    • 0
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  • Hi just wondering if you have ever heard of or looked into dysautonomia??
    Anonymous 42789 Replies Flag this Response
  • TEST:Antinuclear Antibodies,AntiDNA Antibodies,Transglutaminase Antibodies,Reumathoid Factor,CRP,Cortisol levels!!!(serum or urine metabolites),Total Estrogen(i understand that Megaloblastic Anaemia and Hipotyroidism have been excluded)
    Anonymous 42789 Replies Flag this Response
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