Discussions By Condition: Medical Stories

Epsein Barr, Fibromyalgia, Cancer? When do doctors actually have answers?

Posted In: Medical Stories 9 Replies
  • Posted By: Anonymous
  • October 15, 2009
  • 11:41 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!

Reply Flag this Discussion

9 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 cold New 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! If you have a bunch of the symptoms http://forums.wrongdiagnosis.com/showthread.php?t=62327 and it sounds like it could be you then come over to http://forums.wrongdiagnosis.com/showthread.php?p=200513&posted=1#post200513 and lets talk about it.
    Freddd 3576 Replies
    • October 16, 2009
    • 00:16 AM
    • 0
    Flag this Response
  • I saw something very recently on, I think, medical mysterys. I'm sure it was identical. Thre pregnancy was the tip off. I will look back at episodes I can to see what happened. I'll be in touch, Tracy
    Trindone 18 Replies
    • October 16, 2009
    • 04:02 AM
    • 0
    Flag this Response
  • I think the episode was on "porphyria', I;ll keep looking, but I think this was it. Good Luck
    Anonymous 42789 Replies
    • October 16, 2009
    • 04:59 AM
    • 0
    Flag this Response
  • The other option, and probably the best is get to an endocrinologist. This could be Wilsons disease or Fabry's too. I did see your exact symptoms on Discovery Channels Medical Mysteries. Check there, it was a young woman who had it. I will continue to look for the episode, if anyone else out there has seen it, please help this woman. I do feel like time is urgent to get you to an endocrinologist for a diagnosis & treatment soon. Best of Luck,
    Trindone 18 Replies
    • October 16, 2009
    • 05:51 AM
    • 0
    Flag this Response
  • The other option, and probably the best is get to an endocrinologist. This could be Wilsons disease or Fabry's too. I did see your exact symptoms on Discovery Channels Medical Mysteries. Check there, it was a young woman who had it. I will continue to look for the episode, if anyone else out there has seen it, please help this woman. I do feel like time is urgent to get you to an endocrinologist for a diagnosis & treatment soon. Best of Luck,That is funny. I watch that show almost religiously trying to find answers for myself and saw that episode and cried during the whole thing because it felt so much like me. I saved it on my DVR. Then last week my doctor tested me for it and when the test came back positive I went to watch the episode again and my husband had accidentally deleted it. OOOOps . I cant seem to find it online so if you have any luck please share. They are running an eptein barr panal to see what me levels are and I should have them back my friday of next week. my concern is that it is a dead end becasue over 90% of people tested come back positive and it could just verify that I had mono in the past. They did an ultrasound of my thyroid today adn the tech said everything looks fine, but the radiologist will get the final results to my doctor on monday. I really appreciate you concern. I wish I would have found this forum years ago. It makes me feel better just knowing that there are people out there that dont think I a crazy. Talk to you soon
    Anonymous 42789 Replies
    • October 16, 2009
    • 04:59 PM
    • 0
    Flag this Response
  • Try Discovery Health, Episode Guide, there are several pages but that should get you started. Good Luck, keep your chin up & you'll find an answer...I'm sure of it
    Trindone 18 Replies
    • October 17, 2009
    • 05:27 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 cold New 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!I am not sure but I am almost in the same boat same list of symptoms minus the kidney add in spots in front of eyes like little floating specs of dust that come and go. Most recent rapid weight loss, loss of bowels and fainted X2 for the year never having done that before in my life, unlike you though I have not had kids even though I am 28 and ahve been married for 9 years so do not know if symptoms go away during pregnancy.RIght now after 3 years of being told I am perfectly healthy someone suggested doing a vitamin mineral test www.spectracell.com I did it and they showed I was off on alot of stuff most of it being antioxidants, I was put on IV vitamin/mineral/antioxidant therapy treatment 2 weeks ago so even though we don't know what's CAUSING it alot of it is feeling better with the treatments while they still search for cause. Fibromyalgia, chronic sleep syndrone, thyroid dysfunction have all been suggested.. I had partial tyroid removal age 21 but normal blood work shows... you guessed it "normal"The biggest one to me like you said I was really smart in school.. but have been having memory loss and confusion... it's crazy and my local doctor in the Bahamas thinks I'm crazy and so does my husband... so I would call it sad not crazy.At least with the spectra cell results that showed them what was "off" so they can treat that while they continue to search and that pointed them towards a few new things to test for one being Lyme Disease although sometimes you can test negative for that numerous times before testing positive... just thought I'd throw that out there.Oh yeah b12 defiency does cause alot of what you are having as well.. longer defiency causes the memory loss thing and the spectra cell did show I was off in that... so maybe worth a test to see whats off to at least make you feel better while they do what I am doing "continue to search"
    Anonymous 42789 Replies
    • October 27, 2009
    • 08:17 PM
    • 0
    Flag this Response
  • My suggestion would be to look up the desciption your sympathetic nervous system, the fuctionality of what this controls could fit. A damaged sympathetic nervous system can be caused by marine toxins. Oftem, as the gates, at the ends, leak & send signals ie.,chemicals to the brain and confuse & disrupt many of the bodys operations. There is no testing, rather an examination of potential exposure. But its a place to start.
    Trindone 18 Replies
    • October 28, 2009
    • 06:52 AM
    • 0
    Flag this Response
  • This could be mastocytosis , ask your doc to test your blood tryptase levels
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.