over 8 years and no diagnosis HELP

lnh31 · New User Joined: 15 Oct 2009 Posts: 4

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.

[b]Symptoms:[/b]
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

[b]New Symptoms:[/b]
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!

How did you get diagnosed and how long did it take?

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 237

Hi lnh31,

I can personally relate to your post, but I really do not have answers. I have a lot of symptoms unaccountable to a specific diagnosis myself. But I do want to suggest you look into a program called the Hill Burton program which offers free and reduced cost medical care in specific locations. Hopefully you can find one in your area--these facilities receive federal funding through grants--and the program covers surgeries, radiation and chemo at hospitals and clinics receiving this funding. Here is the link:

www.hrsa.gov/hillburton/default.htm

I just learned from the nurse yesterday, that a scan indicates hyperthyroidism--however--my blood work is normal, and I had a biopsy this year which reveal no cancer cells. I am no medical expert, but it is the kind of testing done to you which helps rule cancer out. Had a biopsy been done on me, my endometrial cancer would had been caught 1.5 years earlier. Instead, my gynos ordered ultrasounds which indicated multiple fibroids--and deemed my condition non-cancerous without further testing.

My heart goes out to you. I have shared some similar symptoms, although so far they have not been attributed to cancer. I have had to wrap my feet and arms at times due to severe muscle cramps and twitching, soreness in my body, and joint pain (almost 11 years now). I also suspect Fibromyalgia, but my doctors have ignored my complaint on these matters for some time now. Last week I was diagnosed with sleep apnea--I have been telling them for over 3 YEARS I believe I have sleep apnea. Finally, someone listened, and of all people, it was my endocrinologist which pushed to get a diagnosis on it.

Stick with it, and continue to pursue and push for answers. Have you been examined for Trigeminal Neuralgia? It can cause severe nerve pain in your face, headaches, jaw pain...I was diagnosed almost two years ago. I have also notice bloody mucus before my bouts with it get very lengthy, although, I do not understand the correlation.

I wish I could offer better answers to you. I really relate to your dilemma and frustration. You are in my thoughts and prayers, and hopefully someone will come along to offer better advice.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2

lnh31 · New User Joined: 15 Oct 2009 Posts: 4

thank you for all you help and kind words. i hope that my ultrasound shows something whne I get the results back tomorrow. If not I might push for more.

I will check out the website you gave me. thanks

I sometimes wonder how doctors even get through school and graduate without the ability to diagnose someone.

lnh31 · New User Joined: 15 Oct 2009 Posts: 4

[quote="rmaureen"]Hi lnh31,

I can personally relate to your post, but I really do not have answers. I have a lot of symptoms unaccountable to a specific diagnosis myself. But I do want to suggest you look into a program called the Hill Burton program which offers free and reduced cost medical care in specific locations. Hopefully you can find one in your area--these facilities receive federal funding through grants--and the program covers surgeries, radiation and chemo at hospitals and clinics receiving this funding. Here is the link:

www.hrsa.gov/hillburton/default.htm

I just learned from the nurse yesterday, that a scan indicates hyperthyroidism--however--my blood work is normal, and I had a biopsy this year which reveal no cancer cells. I am no medical expert, but it is the kind of testing done to you which helps rule cancer out. Had a biopsy been done on me, my endometrial cancer would had been caught 1.5 years earlier. Instead, my gynos ordered ultrasounds which indicated multiple fibroids--and deemed my condition non-cancerous without further testing.

My heart goes out to you. I have shared some similar symptoms, although so far they have not been attributed to cancer. I have had to wrap my feet and arms at times due to severe muscle cramps and twitching, soreness in my body, and joint pain (almost 11 years now). I also suspect Fibromyalgia, but my doctors have ignored my complaint on these matters for some time now. Last week I was diagnosed with sleep apnea--I have been telling them for over 3 YEARS I believe I have sleep apnea. Finally, someone listened, and of all people, it was my endocrinologist which pushed to get a diagnosis on it.

Stick with it, and continue to pursue and push for answers. Have you been examined for Trigeminal Neuralgia? It can cause severe nerve pain in your face, headaches, jaw pain...I was diagnosed almost two years ago. I have also notice bloody mucus before my bouts with it get very lengthy, although, I do not understand the correlation.

I wish I could offer better answers to you. I really relate to your dilemma and frustration. You are in my thoughts and prayers, and hopefully someone will come along to offer better advice.

Rhonda[/quote]

My ANA was Negative lat month when they tested it.

MONOCYTE 11 STATED TO BE HIGH

here are my epstein barr test results. I dont know what they mean yet but . .

EBV NUC Ab > 8.0
EBV EAD Ab <0>8.0
EBV VCA Igm 0.9

Other Tests:

CBC Value Reference

white count: 6.8 4.0-10.0 K/uL
red blood count 5.22 H 4.20-5.20 M/uL
Hemoglobin 16.2 H 12.0-16.0 g/dL

Sodium 142
Potassium 3.8
chloride 105
carbon dioxide level 30
calcium 9.4
glucose 88
blood urea nitrogen 11
Creatinine 0.76
bun/creatinine ratio 14.5
glomerular filtration rate 93
glomerular filtration rate AA 112

TSH 1.946
FREE T4 .09
FREE T3 3.5
B12 589

THYROID ULTRASOUND

SMALL NODULE FOUND ON BOTH SIDES OF THYROID ONE IS 4.6X6X7.7 MM AND THE OTHER IS 4.9X7

RADIOLOGIST SUGGESTS THAT I HAVE ANOTHER ULTRASOUND IN 6 MONTHS TO SEE IF THERE IS ANY CHANGES. OTHER THAN THAT NOTHING.

ANY THOUGHTS?
Edit/Delete Message

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 237

Hi lnh31,

I really do not have the medical expertise to interpret your results. Maybe someone will post with more knowledge on this subject.

Now, concerning your nodules, doctors responded in a similar way to me to make sure my goiter remained stationary in size. It has not changed in the past couple of years, and I have had 2 biopsies performed on it. No sign of cancer in it, although the doctor still projected a very slim possibility of it. Most nodules are benign.

I can see from your report your endo was more through in testing than mines--I do not think I will stick with her--I have diabetes and she has not adequately addressed it in my opinion.

What I would suggest, however, is a fine needle biopsy of these nodules--at least it will let you rule out any likelihood of cancer in them. I would call them and flat out ask for this testing. Being your Epstein Barr was positive, you would think they would have done it from the get go. You might call some other doctors offices, and tell them you tested positive for that test, and feel it warrants more extensive testing.

Hang in there. Maybe someone will post with direct experience or more knowledge. I know this most be terribly frustrating for you.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2

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