Male, 32, England. I've had about 7 years of illness now, and never really been satisfied with any diagnosis (I was labelled as having CFS as I think most are when other things have supposedly been ruled out).
- Frontal headaches, feeling of "pressure" in the eyes and sinuses (currently awaiting results of a head and neck MRI)
- Swollen (not always sore) throat, occassional hoarseness, neck and shoulder pain
- Occassional swollen lymph nodes in neck (collar bone area)
- Horrible taste in mouth, halitosis, feeling of trying to swallow thick mucus, bit of a blocked nose, dry mouth
- Bad acne flare ups on face and back and very greasy skin
- Eyes feel itchy/burning - bit bloodshot
- Hot flushes, night sweats
- my ribs are tender around the sides of the body (believe this is called costochondritis?)
- nausea and random mix of dihorrhea/constipation
- tests have shown consistantly both blood and protein in my urine - fully investigated and put down as idiopathic. However I continue to have pain (in the bladder?), need to go all the time, urine smells like acetone...
- Get very, very cold hands and feet
2 years ago I randomly had acute pancreatitis followed by gallbladder removal via keyhole. Not overweight and non-drinker.
Had a rash a couple of times as well, most recently for the past few days coinciding with my symptoms increasing. < edited >
ANY advice, guidance, words of wisdom, or even spells would be most appreciated. I'm so bored of all this and just want an answer.
Last edited by thunderstruck; 10-05-2009 at 03:55 PM.
Reason: Please don't post links to pictures, or images, per posting policy. Thanks!
Sounds terrible Thunder. I don't know too much about the english medical system but is there someplace you can go to get a thorough work-up? Your symptoms sound like several things are going on which is quite common with autoimmune diseases.
Thunderstruck, welcome! I'm just a patient, so please take what I post in that light, OK? In your shoes I'd want to think some doctor is taking a WIDE view, considering, as one of my drs. said, a "single bullet theory". Problems may not have a single cause, but it's an obvious line of inquiry, is what he meant. In my case, I knew nothing about rheumatology, that it's a speciality that can encompass disparate symptoms.
Has a dermatologist tried to diagnose your rash? A turning point for me was my telling my GP that I really believed that my recurrent rashes correlated to my other recurrent problems AND seemed to be sun-triggered. (My rash did turn out to be lupus-specific.)
For ongoing blood in urine, have you seen a urologist? A nephrologist (kidney specialist)?
Have you read the "stickies" at the top of the thread list?
Hope you post more when you can. Meanwhile, sending warm wishes, VeeJ
Thanks so much for taking the time to reply, both of you.
I have had several blood tests etc taken at my doctor's, but nothing conclusive ever really shows up. I'm not sure if any tests for lupus specifically have been carried out.
I haven't seen a dermatologist, just my GP. I even went to a pharmacist in desperation - obviously he wasn't that much help.
I have seen a urologist, who said that my symptoms were idiopathic. Maybe if he'd taken in the wider picture...