Discussions By Condition: I cannot get a diagnosis.

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

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: MadisonLeigh
  • January 28, 2010
  • 05:43 AM

Hello,

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

History:
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 :)

Reply Flag this Discussion

5 Replies:

  • Hi,It sounds like you may have an immune deficiency disease like I do. I suffered for 21 years with similar symptoms to yours because my doctors would test my immune system and when the blood tests came back normal they would think I was fine. But they did not know that some immune diseases can be present even when blood tests come back normal. The particular disease I have is called CVID.Good luck and keep us posted,E
    ErinBBC 17 Replies
    • February 9, 2010
    • 00:05 AM
    • 0
    Flag this Response
  • Firstly, with so many kidney infections I'm thinking it may be an anatomical issue or an immune system issue. I would do a kidney flush/ detox (I've seen Dr. Schulze's do the job) and see if that improves anything. Seeing redish urine can be blood in urine- which is no good. Another reason I would take care of the kidney.Good luck
    Med Student 64 Replies
    • February 10, 2010
    • 07:06 AM
    • 0
    Flag this Response
  • Hello,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 decentHistory: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 :)I would look at Adrenal Gland Disease, maybe an adrenal adenoma. You have a lot of the symptoms for that. (I know because I have it - took three years to diagnose.)
    Anonymous 42,789 Replies
    • February 13, 2010
    • 03:06 AM
    • 0
    Flag this Response
  • Space is intricate in its dimensions as opposed to the simplicity in travel of time. Life is complex studied in zang-fu (organs), but comprehensive in the study of meridians. Disease manifests in manifolds, but only a single ailment is in motion.Western medicine treats by visualizing the complicated structure of a cell, whereas Eastern Medicine administers one phenomenon.Hello, I'm an acupuncturist, and I would like to offer you my help. Reply me with your birthdate, time of birth (it's written on the birth certificate), city and country of birth, and I'm certain that the information I will be giving can progress you to coming closer to some answers.Look forward to helping you. Hello, 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 History: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 :)
    jeejee.ca 7 Replies
    • February 14, 2010
    • 08:31 AM
    • 0
    Flag this Response
  • I was recently diagnosed with celiac disease after about 5 years of increasing foot pain, back pain, fatigue, inflammation all over my body. I too was active once and now use a wheel chair for most things. I felt like I was heading downhill FAST when I was diagnosed. Frankly, I am not better yet, only been gluten free for 1 month and still incredibly fatigued. But just before diagnosis I was crashing hard including nausea, stomach aches, low testosterone, low Vit D, low B-6. Celiac is often missed since most doctors were educated years ago when it was thought to be only in children and only stomach symptoms and 1 in 10,000 people. Now we know 1 in 100 have it (97% undiagnosed) and it typically takes 9-11 years for a diagnosis and has all sorts of other symptoms like my debilitating foot pain. Anyway, I know I have a habit of thinking everyone has it now, but just wanted to suggest you have them check for it and dont take no for an answer. I went through 22 providers before someone thought to check and my primary physician thought that person was crazy for doing so. My parents went to get checked because now 2 of their kids have it and their doctors did not want to bother. Quick routine blood work could indicate it, so worth a shot. Good luck!-Nathan
    Anonymous 42,789 Replies Flag this Response
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