Discussions By Condition: I cannot get a diagnosis.

Doctor called me "Medical Mystery"

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: rtaormino
  • March 18, 2009
  • 11:19 PM

Hi, I am a 28 year-old mom. I’m pretty healthy except for these awful symptoms I’m having. I feel like I'm dying.

I’m 5’6’’ and 128 lbs. No family history of diseases (except for diabetes, Congestive Heart Failure, basal cell cancer, and aneurysm in my older grandparents) Over the past few months I have been having lots of different symptoms. Sorry in advance for how long this is.

1. Horrible muscle/ ligament pain everywhere. My muscles feel ‘sick’. Sometimes they itch and burn internally.
2. Lymph nodes hurt. Soreness under my armpits, in my neck, and lower back
3. Weakness/ fatigue in my arms, hands, feet and legs. Legs shake when I walk down stairs. Arms tire after very little activity.
4. Painful cramping/ contraction of muscles in hands, arms and legs
5. Painful shock-like sensations in fingers, hands, toes and feet
6. Muscle twitches
7. Joints always cracking and popping (ligament problem?)
8. Loss of flexibility and range of motion
9. Nausea
10. Flushing with sweating, nausea, weakness, palpations, heart rate feels faster
11. Hypoglycemic episodes
12. Orthostatic hypotension, fast heart rate upon standing or sitting really straight in chair
13. Get out of breath from talking/ reading out loud.
14. Tender spot in lower left abdomen (Doctor felt it)
15. Constipation
16. Get irritated easily
17. Excessive sleepiness

Do you think any of these could be the cause?
I was thinking about a dysautomia like ALS or POTS, muscle wasting diseases, lymphomas, diabetes, or Huntingtons Disease.

I have tried:
Myofascial massage and it made the pain 100% worse
Stretching and light exercise but it resulted in more pain and nausea
Taking a B complex multivitamin, but have felt no difference


My doctors have tried
My GP and Rheumatologist tested my B12, TSH, CBC, Lymes, Sed Rate, ACE, CCP, Rheumatoid Factor, CK level, Complement 3, Complement 4, SCL-70, Anti SM-Ro/La, B2GP1, ANCA, PSDNA, Thyroid Antibodies, Folate, Total Protein Electrophoresis, kidneys, and liver function through blood tests. All were good. My urine was good. Metabolic panel was good. I also had a clear ultrasound of my abdomen, a clear brain and cervical-spine mri w/o contrast.

They ruled out: Rheumatoid Arthritis, Lupus, Scleroderma, Sjogens, other connective tissue diseases, Multiple Sclerosis (even though the brain/ neck MRI was w/o contrast), CMV and Fibromyalgia.

Some findings:
• My Platelet count has been marginally low for a while (around 115)
• I had a complex cyst on my left ovary that has since went away.
• Positive Parvovirus B19, IgG at 7.0 but the IgM was negative.
• Positive EBV Early Antigen Ab, IgG at 126 (reference >120 positive)
• Positive EBV Ab VCA, IgG at 3168 (reference >120 positive)
• Positive EBV Nuclear Antigen, IgG at 646 (reference >120 positive)
• Negative EBV VCA IgM
• ANA is low positive 1:40 with nucleolar pattern

Most people have antibodies to Parvo and Epstein Barr though!


Does anyone experience these symptoms? What were you told?

The next tests my doctor is giving me:
ECG of heart
Diabetes Glucose and Fasting 3 hour Glucose Tolerance Test
Upper GI Flouroscopy x-ray
Abdominal/ Pelvis CT with contrast

If these are ok, she will order an EMG and nerve conduction study.


I am going broke from these tests :(

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8 Replies:

  • hi.. sorry you feel like crap but i know what you're going thru. read ALL my posts and get back to me if you can relate. read the last one first then go to the beginning. http://forums.wrongdiagnosis.com/showthread.php?t=16210http://forums.wrongdiagnosis.com/showthread.php?t=7833 http://forums.wrongdiagnosis.com/showthread.php?t=6873--sonicbmx
    sonicbmx 44 Replies Flag this Response
  • Hello! As I was doing some research of my own, I stumbled across your medical situation. Just briefly I noticed that with your physician ordering the labs you mentioned, did he order a RF/RA aka Rheumatoid Factor? Also did they order a ESR aka Sed Rate? As that checks for any inflammatory issues that may be going on. Also I did not see a CMV aka Cytomegaly Virus Igg/Igm. As those will contribute to fatigue and Rheumatological issues. Also as I have read off your post, you may not have one problem. But you may have two or more problems as some of your Sx may be masking other issues. There for creating confussion with a or multiple Dx. I will attempt to follow your prognosis of issues as you update. Good Luck and God Bless!
    Anonymous 42789 Replies Flag this Response
  • Hmmm, have they thought of possibly Cystic Fibrosis? Requires a sweat test and fecal elastase test to start.... very non-invasive, sounds like you have some of the symptoms of atypical case..... research it online, see what you think....
    Anonymous 42789 Replies Flag this Response
  • Yeah, I have a lot of the same issues as you, except not so much with the diarehha. I had a Western Blot done for Lymes and that came back negative. Can I order the test for myself from Igenex and have it done at a local lab? I am sick of doctors at this point. I think my next step is to go on a gluten, wheat, sugar, caffeine and aspartame-free diet. I don't know how on earth I will stick to it, but I have to try! If anyone else is going on a similar diet to try to control their symptoms, please let me know, maybe we can support each other!Meanwhile, I have my Glucose and Creatinine tests tomorrow morning and my GTT on Saturday. Then I have a CT of my abdomen and pelvis next week. I will let everyone know how it turns out. Thank you to anyone out there that is reading this and thank you sonicbmx for your response! hi.. sorry you feel like crap but i know what you're going thru. read ALL my posts and get back to me if you can relate. read the last one first then go to the beginning. http://forums.wrongdiagnosis.com/showthread.php?t=16210 http://forums.wrongdiagnosis.com/showthread.php?t=7833 http://forums.wrongdiagnosis.com/showthread.php?t=6873 --sonicbmx
    rtaormino 4 Replies Flag this Response
  • Hi Mike.Yes, I had negative CMV, RF, and ESR. I agree that multiple issues may be present or that one is causing a few of the others indirectly.Thanks for writing!RhondaHello! As I was doing some research of my own, I stumbled across your medical situation. Just briefly I noticed that with your physician ordering the labs you mentioned, did he order a RF/RA aka Rheumatoid Factor? Also did they order a ESR aka Sed Rate? As that checks for any inflammatory issues that may be going on. Also I did not see a CMV aka Cytomegaly Virus Igg/Igm. As those will contribute to fatigue and Rheumatological issues. Also as I have read off your post, you may not have one problem. But you may have two or more problems as some of your Sx may be masking other issues. There for creating confussion with a or multiple Dx. I will attempt to follow your prognosis of issues as you update. Good Luck and God Bless!
    rtaormino 4 Replies Flag this Response
  • Thank you, I will definitely look into this. Have you known someone with an atypical case?Hmmm, have they thought of possibly Cystic Fibrosis? Requires a sweat test and fecal elastase test to start.... very non-invasive, sounds like you have some of the symptoms of atypical case..... research it online, see what you think....
    rtaormino 4 Replies Flag this Response
  • call IgeneX and request a test kit: (800) 832-3200, www.igenex.com, they'll send one out. you will need your GP (or your coolest Dr) to sign the Requisition form to allow the blood draw. do not draw on a THU or FRI as blood is time sensitive. you might consider a CD-57 test at LabCorp simultaneously.start with test #188 & 189 at IgeneX. it is VERY important that you get a copy of the results even if the ordering doctor (Dr that signs for it) tells you you're negative. this why people remain sick and go undiagnosed.what matters is if you have ANY positive bands.. if you do, then find a Lyme literate MD and they will clinically diagnose you based on symptoms.begin treating and continue testing until seropositive. a laboratory diagnosis will ensure proper treatment.what state do you live in and how much contact do you have with the great outdoors or animals?if the majority of your testing has come back normal and you live in and endemic area, then you're certainly a candidate.diarrhea was an early symptom of Babesiosis.. stools are normal again. my condition is 100% improved.. all the best.--sonicbmx
    sonicbmx 44 Replies Flag this Response
  • Check for other auto immune diseases: Crohn's, ulcerative colitis, behcets, and theres more. All of these have similar symptoms specially joint and muscle pain. God Bless and I hope you feel better
    lizitrona 6 Replies Flag this Response
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