Discussions By Condition: I cannot get a diagnosis.

I know my body...docs say nothings's Wrong

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: 4docs0answer
  • April 1, 2008
  • 11:20 AM

I am so frustrated. I began to experience symptoms over 4 years ago. I've been to the docs, but no answer. I know my body. There are DEFINITE changes and my lifestyle's been affected. :mad:

I started experiencing extreme fatigue, joint & muscle pain, and swelling over 4 years ago. I went to the doc. The only thing that showed up was a slightly elevated ANA. He said nothing to worry about. :confused:

I switched docs. She ordered more blood work. The ANA was still slightly elevated.

Then last year, I began having fainting spells. Nothing showed up on CT scan, ECG, Echo or Cartoid Duplex. There was a huge drop in BP and increase in pulse between sitting & standing. She said I may have a low fluid volume and also referred to a cardiologist (awaiting appt).

I've also had spells of muscle jerking and shakiness, and occassional difficulty with balance. I get out of breath and have chest pain climbing 1 flight of stairs. Only 2 months ago I could run up them no problem!

A few months ago I began to have menopause symptoms (I'm 32 yrs.). I had severe hot flashes, night sweats, acne, spotting, drastically swollen breasts, large weight gain, and hair loss. My OB/GYN put me on birth control.

PLEASE HELP! I also have depression, which I'm on meds for. Is this all in my head? I know my body has changed. I can't work like I used to. Thanks! :D

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11 Replies:

  • Those symptoms are very common for a thryoid condition....and thryoid conditions are very common ..... I have thyroid problems, too. Check out Mary Shomon's site (she is a patient advocate for thyroid conditions)...get the blood work for FT4, FT3, TSH and the antibodies for graves and hashimotos disease both autoimmune disease of the thryoid and fairly common among women. Thryoid problems can also be the CAUSE of some forms of depression .... Not all doctors are up on the thryoid, so insist on all blood work and you may want to see a specialist of the thryoid called an endocrinologist...meanwhile go to mary's site and read up and see if you see yourself in those symptoms. Another thought is ovarian hormones....some women do experience premature menopause...and perimenopause symtpoms (very similar to thryoid symptoms) can pop up as early as mid thirities or so....other GYN problems can also casue these symptoms being under the care of a good GYN that you trust will help. I am not sure about the blood pressure thing and if it is related to thryiod or ovarian conditions...my daughter has a blood pressure condition called orthostatic intollerance....comes with blood pressure not being able to adjust quickly enough hen ther person goes from laying to standing and so forth...you can faint with that condtion...feel light headed.....may be somthing to look into. The ANA value may be worth a new check...I am not up0 on that so maybe others here will answer for that. Joan
    Joan5555 316 Replies Flag this Response
  • the best advice is to keep searching and keep looking for a doctor to take your health seriously. There are a lot of docs out there that will say that an ailment is in a patients head. They say this for a few reasons - 1) they are trained to do so 2) big ego- if i don't know what is wrong with the patient then they must be crazy 3) they don't spend enough time with the patient and don't want a difficult patient so they suggest a psychiatrist to get rid of you
    alexburton 48 Replies Flag this Response
  • Alex, you are SO right about that! Joan
    Joan5555 316 Replies Flag this Response
  • yes u r so right
    elias01 36 Replies Flag this Response
  • The blood pressure thing rang big bells of recognition for me. I'm sorry I can't remember what the condition is called but I think it might be a metabolic condition. Anyway the way it is diagnosed is by putting people on a tilting table and measuring their blood pressure upright and then horizontal. A big difference between the two is used to diagnose this. I'll try and look around the internet and see if I can find details of this condition again so I can post it for you.
    ruth40 55 Replies Flag this Response
  • tilt table test I believe is for orthostatic intollerance.....
    Joan5555 316 Replies Flag this Response
  • Found this - hope its useful. It was POTS I had been thinking of. a) Chronic Orthostatic Intolerance: Simply put, an individual with Chronic Orthostatic Intolerance experiences day-to-day symptoms including dizziness and often altered vision (blurred, ‘white outs’, ‘black-outs’), fatigue, nausea, neurocognitive deficits, disordered thermoregulation, palpitations, high pulse low blood pressure, headache, tremulousness, hyperpnea, difficulty breathing, sweating, and pallor. For those who are afflicted with Orthostatic Intolerance, there is an excessive increase in heart rate upon standing, resulting in the cardiovascular system working harder to maintain blood pressure and blood flow to the brain. b) Postural Orthostatic Tachycardia (POTS): Chronic Orthostatic Intolerance is associated with Postural Orthostatic Tachycardia Syndrome (POTS). Postural Orthostatic Tachycardia is a syndrome. And as such, there is an array of symptoms that accompany it. Because the Autonomic Nervous System plays a large role in regulating certain functions throughout the body, the symptoms are widespread. Symptoms will vary from person to person and will include some of the following: palpitations, dizziness, lightheadedness, exercise intolerance, blurred vision, chest pain, high pulse low blood pressure, fainting, fatigue, migraines, blood pooling in limbs, cognitive impairment, gastric discomfort and sleep disorders among others. The onset of POTS often follows a viral infection or other inflammatory condition. It affects an unknown number of patients, mostly female, between the ages of 12 and 50. c) Neuropathy: The name Neuropathy is given to a group of disorders involving nerves. The symptoms range from a tingling sensation or numbness in the toes and fingers to paralysis. And it is estimated that 35 percent of persons with HIV disease have some form of neuropathy. Neuropathy is a problem in peripheral nerve function (any part of the nervous system except the brain and spinal cord) that causes pain, numbness, tingling, swelling, and muscle weakness in various parts of the body. It may be caused by physical injury, infection, toxic substances, disease (e.g., cancer, diabetes, kidney failure, or malnutrition), or drugs such as anticancer drugs. It is also called peripheral neuropathy. Symptoms ]include disturbances of blood pressure, heart rate, or bladder and bowel control, muscle weakness, impotence; loss of balance; sensitivity to touch, tingling, extreme pain, reduced ability to perspire, constipation, bladder dysfunction, burning sensation, and inability to focus the eyes depending of which nerves are affected. It may be genetic or acquired and it can either progress slowly or quickly affecting some of the nerves or all of them causing loss of sensation and weakness. Some examples of Neuropathy are: Carpal Tunnel Syndrome, polio and shingles. Injury, toxins and even vitamin deficiency have been identified as causes of Neuropathy.
    ruth40 55 Replies Flag this Response
  • Ruth, really good post! Good information review for me as well for my daughter's similar condition...Joan
    Joan5555 316 Replies Flag this Response
  • Nope, it's likely not all in your head. Please do not let them tell you so if you know something's wrong with you.I had many of your symptoms and was diagnosed with Hashimoto's Encephalopathy, a rare complication of autoimmune thyroiditis. It is diagnosed by checking thyroid ANTIBODIES- most patients have completely normal hormone levels... You might also have just the plain old thyroiditis without the encephalopathy... or Grave's disease.In any event, the stereotypical autoimmune patient is the 30 year old female. Chances are there is some kind of autoimmune disease (whether it's HE or thyroiditis or not) brewing in your body. I'd keep going to rheumatologists until one of them gives you a diagnosis (I had to go to 8 neurologists before they diagnosed me).Sorry you are going through this. Do not give up.
    Anonymous 42789 Replies Flag this Response
  • Found this - hope its useful. It was POTS I had been thinking of. a) Chronic Orthostatic Intolerance: Simply put, an individual with Chronic Orthostatic Intolerance experiences day-to-day symptoms including dizziness and often altered vision (blurred, ‘white outs’, ‘black-outs’), fatigue, nausea, neurocognitive deficits, disordered thermoregulation, palpitations, high pulse low blood pressure, headache, tremulousness, hyperpnea, difficulty breathing, sweating, and pallor. For those who are afflicted with Orthostatic Intolerance, there is an excessive increase in heart rate upon standing, resulting in the cardiovascular system working harder to maintain blood pressure and blood flow to the brain. b) Postural Orthostatic Tachycardia (POTS): Chronic Orthostatic Intolerance is associated with Postural Orthostatic Tachycardia Syndrome (POTS). Postural Orthostatic Tachycardia is a syndrome. And as such, there is an array of symptoms that accompany it. Because the Autonomic Nervous System plays a large role in regulating certain functions throughout the body, the symptoms are widespread. Symptoms will vary from person to person and will include some of the following: palpitations, dizziness, lightheadedness, exercise intolerance, blurred vision, chest pain, high pulse low blood pressure, fainting, fatigue, migraines, blood pooling in limbs, cognitive impairment, gastric discomfort and sleep disorders among others. The onset of POTS often follows a viral infection or other inflammatory condition. It affects an unknown number of patients, mostly female, between the ages of 12 and 50. c) Neuropathy: The name Neuropathy is given to a group of disorders involving nerves. The symptoms range from a tingling sensation or numbness in the toes and fingers to paralysis. And it is estimated that 35 percent of persons with HIV disease have some form of neuropathy. Neuropathy is a problem in peripheral nerve function (any part of the nervous system except the brain and spinal cord) that causes pain, numbness, tingling, swelling, and muscle weakness in various parts of the body. It may be caused by physical injury, infection, toxic substances, disease (e.g., cancer, diabetes, kidney failure, or malnutrition), or drugs such as anticancer drugs. It is also called peripheral neuropathy. Symptoms ]include disturbances of blood pressure, heart rate, or bladder and bowel control, muscle weakness, impotence; loss of balance; sensitivity to touch, tingling, extreme pain, reduced ability to perspire, constipation, bladder dysfunction, burning sensation, and inability to focus the eyes depending of which nerves are affected. It may be genetic or acquired and it can either progress slowly or quickly affecting some of the nerves or all of them causing loss of sensation and weakness. Some examples of Neuropathy are: Carpal Tunnel Syndrome, polio and shingles. Injury, toxins and even vitamin deficiency have been identified as causes of Neuropathy. What kind of dr. should i see who can check if i have orthostatic intolerance because i get very fast heartbeat and palpitations just by standing up or by any minimal physical exertion and chest pain and out of breath and all sorts of weird pains in both my arms and the back of my legs from the knee down to my ankle
    elias01 36 Replies Flag this Response
  • The blood pressure thing rang big bells of recognition for me. I'm sorry I can't remember what the condition is called but I think it might be a metabolic condition. Anyway the way it is diagnosed is by putting people on a tilting table and measuring their blood pressure upright and then horizontal. A big difference between the two is used to diagnose this. I'll try and look around the internet and see if I can find details of this condition again so I can post it for you.Q-Sart test
    Anonymous 42789 Replies Flag this Response
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