Discussions By Condition: I cannot get a diagnosis.

desperate- can anyone help me?

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: a.girl
  • September 10, 2011
  • 10:31 PM

I am a 16 year old female, and no one has any idea what's going on.

Headaches, nearly daily, in forehead
Nystagmus (eye-flickering) back and forth horizontally, at a constant speed for about a minute, daily.
High heart rate- resting rate about 80bpm, raises to as high as 150bpm after standing/activity
Low blood pressure- as low as 70/40
Low body temperature- average about 95F
Cold hands, feet- very sensitive to temperature changes. Extremities are painful and stiff when cold, and turn white.
Nosebleeds- can last for as long as 30 minutes.
Red, blotchy (almost purple) legs after standing/showering for a length of time.
Dizziness- after climbing stairs or strenuous physical activity
A vertigo-like sensation when eyes closed. I can't keep balance when my eyes are shut, I literally fall backwards.
Joint pain- pretty self-explanatory
Pallor/Pale Skin- again, self-explanatory.

Everything is normal: negative tilt table, normal MRI/scans, normal blood work*, cardiograms, EKG, etc. I have a normal BMI, don't drink/drugs/etc, no family history

Current Conditions:
*Vitamin D deficiency (I take a supplement for it)
Patello-Femoral Syndrome

I almost think this is POTS (postural orthostatic tachycardia syndrome) BUT is it still a possibility although my TTT was "normal"?

Does anyone have ANYTHING similar to this? Please, I need help.

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