9777394 tn?1468991122

Anyone have ideas? Tired of being undiagnosed.

I have been spending years trying to figure out the cause of my symptoms, which seem to be getting worse and changing on a day to day basis. I've had multiple tests run and while some test results have come back abnormal, nothing has led to a diagnosis.

My symptoms include:
-abdominal pain/discomfort
-chronic nausea
-balance problems
-irregular periods/debilitating cramps
-skin rashes (lacey blue on leg) (hives) (depigmentation on back)
-dropping things or stumbling
-tooth pain
-Joint stiffness (especially in ankles)
-Numbness and tingling in arms/legs
-Extreme fatigue
-Eye twitching
-Muscle spasms
-Heart palpitations
-short term memory loss
-chronic sinus infections and bronchitus

abnormal test results:
-various low blood glucose
-low SPO2 (but sleep study did confirm mild sleep apnea- sleep with oxygen concentrator)
-various high BUN, WBC, neutrophils, & monocytes, also high hemoglobin and hematocrit
-various low amylase, calcium, AST
-Two separate doctors (10 years apart) heard heart murmur, but ECHO, EKG, and Holter moniter came back normal.
-Gallbladder mildly distended on U/S
-low hdl (but everything else in lipid panel normal)

Other tests run (Normal):
-Ultrasound: transvaginal, abdominal, gallbladder
-Hida scan
-upper GI
-liver panel
-c reactive protein (2.9- range is <3)
-vitamin D, 25 hydroxy
-TSH 3rd generation
-Celiac disease panel
-TSH with RFX
-vitamin b12
-B. burgdorfer screen

Current 'diagnosis' list:
-dizziness & giddiness
-malaise and fatigue
-abdominal pain, unspecified
-unspecified sleep apnea

Notable things:
-I work in an animal hospital where I am exposed to various diseases/parasites
-Both sides of my family have history of autoimmune, thyroid issues, diabetes, and heart conditions
-I am 31F, 5'3, 127 lbs.
-I have lived in CT, FL, LA and CO.
-Been to multiple therapists to make sure this is not in my head. They all agreed mild anxiety due to symptoms.

What could this be? I'm struggling to keep everything together without a diagnosis and relief from symptoms.

7 Responses
Avatar universal
Is it possible it could be chronic Fatigue Syndrome?
Avatar universal

Hello.  NME in your name sounds like "enemy".  just thought that was interesting.  Just speaking from my own experiences here of course.  I suffer from MANY of the things on your list.   I suffered from a Pituitary Gland disorder that never gave me enough of things like estrogen, etc...  I had periods so bad that I ended up in ER.  Only 1 - 2 periods a year.  
                          DX. PCOS due to pituitary
                          DX. Tumors in uterus due to same
                          DX. Damaged ovaries due to same
                          DX. Hypothyroid
                          DX. Sleep Apnea
                          DX. Fibromyalgia

I hate hate hate the last DX of Fibromyalgia because I think that is just a name that the medical profession (which I was a part of)  has decided to slap onto a disabling condition that they can not completely understand.  But as of now...the history of PCOS is what seemed to have started everything.  

Good times ahead for you NME...not sure which city you are in but you need a sleuth of a young doctor to find your main problem.  Get a sleuth....not just someone who hung up a shingle on a door frame after getting a 77% on the test.

Avatar universal

OH, btw, I am from Estes Park, Colorado.  Also been checked for MS since this state has a lot of people with it.  

Take care and sorry to sound so cranky in last post.

9777394 tn?1468991122
I have seen numerous doctors, most thinking it is probably all in my head- some even writing that, and then test results coming back inconclusive. Luckily a lot of the doctors cant deny some of the symptoms as they are very apparent. I have found a great doctor here in Colorado Springs that is very thorough and very much believes the symptoms I am experiencing are real. But she is booked out months at a time and I can get in to see her about every three months for follow-ups. I think the most frustrating thing is the symptoms can be so generic that they don't lead to an actual diagnosis, especially when the tests are all over the place. I hope they find your correct diagnosis. How long have you been suffering with your symptoms?
9777394 tn?1468991122
I guess anything is possible but as far as I know CFS everything has to be ruled out first prior to diagnosis. Plus my symptoms are very generic as far as various disorders are concerned.
Avatar universal
Just two shots in the dark from clients I have seen with similar symptoms. First, have you ever used Aldara or Zyclara for genital warts or actinic keratosis? I have spoken to a whole lot of people who have suffered severely debilitating systemic symptoms. I am currently gathering data from all these affected people to decide on our next steps.

Second, do you receive neck manipulations from a chiropractor or physiotherapist, etc.? Damage to the vertebral (or sometimes the carotid artery) may cause some of the symptoms you describe, especially if the clotting on the artery has either occluded the artery, affecting blood flow to the brain and/or cause a stroke. The intestinal issues are more difficult to explain.

Third, consider systemic lupus - including drug induced systemic lupus erythematosis, and polycythemia. Your symptoms list includes many of the symptoms of both these conditions.
9777394 tn?1468991122
I have not taken those two meds or any other treatment for those conditions.
I also haven't been to a chiropractor in about 4 years, but did go for a short period following a few months of back pain that I associated from sitting at work 40 hours a week. But something to consider is there is a clot or something I don;t know about. How do they locate a clot anyway?
i have thought about lupus, but again so hard because my symptoms could be one of a million conditions.
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