Discussions By Condition: I cannot get a diagnosis.

23yo female, chronically ill, no diagnosis... please help!

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: MadisonLeigh
  • January 28, 2010
  • 05:43 AM


You guys are my last chance here! I have been dealing with some serious symptoms and a serious illness. The likes of which have not been diagnosed.

Information on myself:
23 y/o White Female
160 lbs, 5'7"
blonde hair/blue eyes/swedish decent

I have been somewhat 'ill' all my life. Frequent infections, etc. Recently, within the last 4 years... things have progressed. I have attacks of high blood pressure and tachachardic heart rate (BP 173/103; HR 192). I have had 19 seperate kidney infections in 2009, hospitalized 4 times. I have had chronic back and neck pain. A visit to Ophthamologist in 2002 showed that I my left eye has atrophied (I do not use it to see... at all, anymore )L: -5.5rx, R: 20/20)... more recently, symptoms have gotten stranger. I have motor problems... sometimes, it is like my words don't come (I am a technical writer... so this is weird to not be able to find words I want to use). Also, my vision becomes blurry and I flush all over (often with fever) during random attacks. I have developed symptoms of depression and anxiety. Urine sometimes appears reddish in color. I have tingling in limbs... and according to several of my specialist and my PCP I have no reflexis in my knees or arms. NONE.

I have had an MRI which looked OK. I have had a CT scan of abdomen: OK. I have slightly elevated white count, a recent finding of a vitamin d deficiency (13.2 when 32-100 is normal) and a Potassium Serum of 2.3.

I used to be quite active... a professional cheerleader... college athlete... very social. As I feel worse, however, the past couple years have become intolerable. I can barely make it through my 8 hr workday w/o my neck and back killing me... feeling like I'm confused... and my bp shooting up. I have boughts of random nausea, vomiting, and diarrhea... several times a week. Sometimes... I feel delirious. I don't know if it's from the vomiting, naseau, and vitamin deficiencies... but it's weird. I am not myself--at all. I haven't been myself in years. I miss 'me.'

I took many diagnostic medical courses in my undergrad courses (I have a medical biology minor) and the only thing I can think might be Acute Intermittent Prophyria? I don't know a whole lot about this disease...

Does anyone have any ideas? I can't live like this much longer, seriously. Everyday I feel worse... I'll have a good day or two... then get sick, take whatever the Dr. gives me to mask the symptoms (often hard-core antibiotics like bactrim and levaquin, and steroids...).
Current Meds:
I currently have to take Ambien to sleep, nexium, Seasonal, and tylenol. That's it.

Can someone please help me? I feel hopeless and know something is wrong... my dr's have no idea... ANY of them... I have tested positive in 2006 or so for 'rabbit fever' aka tuleremia before... but it was an IgM titer and the specialist said I didn't need to take any meds...

OK... I appreciate ANY direction you can provide me. ANYTHING. Thanks :)

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