[regchev]

Hi everyone - I'm really hoping someone can help.

Male, 32. I've had about 7 years of illness now, and never really been satisfied with any diagnosis (I was labelled as having ME/CFS/PVFS as I think most are when other things have supposedly been ruled out).

Symptoms:

- Fatigue
- Bad frontal headaches, feeling of "pressure" in the eyes and sinuses
- Slightly swollen (not always sore) throat, occassional hoarseness, neck and shoulder pain (muscular I think)
- 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 very tender around the sides of the body and solar plexus (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 nail polish remover...
- Get very, very cold hands and feet

2 years ago I randomly had acute pancreatitis followed by gallbladder removal via keyhole. Not overweight, non-drinker, non-smoker.

Had a rash a couple of times as well, most recently for the past few days coinciding with my symptoms increasing. I have pictures of the rash but I can't post links yet (need 15 posts) - you can see them here :

http://i.imagehost.org/0931/l02.jpg
http://i.imagehost.org/0099/l01.jpg

ANY advice, guidance, words of wisdom, anything would be most appreciated. I'm so bored of all this and just want an answer.

Thank you.

 

[lazylegs]

Welcome to the site.

It is difficult for me to say one way or the other on your rash as mine is not raised. The best way to find out about your rash is to see a dermatologist. Take your photos with you in case it is not present on the day of your appointment.

You did not mention joint pain. That is one of the primary symptoms of Lupus. The list of other criteria can be found at the following site:

http://www.thelupussite.com/forum/showthread.php?t=33123

Has your doctor run an ANA?

I hope you find an answer soon.

Take care,
Lazylegs

 

[debatat]

Hi and welcome to the site. It is a great place to find information and support. Do you keep a symptom diary? Note fever, rashes, pain etc. Take photos of rashes etc. It can be useful.

Lazylegs has given you an excellent suggestion re a dermatologist.

I hope you find some answers.

Deb

 

[1tiredmama]

Welcome, Regchev! I am so sorry to read your long list of symptoms. I really feel for you--that's a lot to live with.

I'm no doctor, so this is a shot in the dark here. The halitosis and the funny smell to the urine makes me wonder if you have a metabolic problem, like an enzyme deficiency or something. And here's what brought it to mind:

When some people eat aspagagus, their urine will smell like asparagus shortly after (I'm one of those folks. :blush Anyway, I read somewhere that the reason this happens to some people, and not others, is because some people lack something needed to break the asparagus down completely. Harmless, in this case.

But... Maybe you have a serious problem metabolizing something. On the other hand, I don't know if one would be born with such a problem, or if it can just come about in your twenties. Just thinking out loud.

Do you have access to a top-notch hospital? A nationally known facility? I would suggest looking for help somewhere really good, even if you have to drive a couple of hours to get there. You've suffered long enough.

1tiredmama

 

[Clare.T]

Hello Regchev

I am sorry about your ill health. The nail polish/acetone smell could well be ketones in the urine as found in diabetes. The need to urinate frequently would fit that too and maybe a couple of your other more general problems like fatigue. Presumably you drink plenty. I do not have any medical training so I can't think up any condition that might account for most of your symptoms.
I also can't comment on how normal or common it is to have blood and protein in the urine for no known reason. Presumably an eye is being kept on that and 24 hour urine tests done or the more up to date test and the level is not increasing.

Nothing in your account suggests lupus to non - medical me, although it can take very unusual forms, so I am wondering who suggested lupus to you. For what my comment is worth the skin problems don't look like lupus either. It is very wearing traipsing from doctor to doctor but sometimes it has to be done if at all possible. I agree about seeing a dermatologist and maybe an internal medicine specialist preferably attached to a large teaching hospital who can take an overall view.

You could ask your regular doctor for an ANA test, which isn't specific for lupus but might point to some other problem.

I am sorry can't help more but I do hope you can get some answers before long as this should be the prime of your life.

Wishing you the best of luck

Clare

 

[KarolH]

Welcome to the board. My rash, although mild when it does appear is not raised like yours is. I would suggest a good Dermatologist who may biopsy the area to provide you with more answers.

I agree with the breath and urine having strange odors that something metabloic must be going on with you. A 24 hour urine test should be done to hopefully provide you with more answers.

A good Rheumatologist is who you want to treat with to get to the bottom of anything auto immune. Has your pcp run a ANA test on you or any other antibody tests? If so how did they turn out.

I went from being diagnosed with Chronic Fatigue syndrome, to Fibromyalgia, to Multiple sclerosis before finally abnormalities showed in my blood work and painted a clearer picture.

The road to diagnosis is frustrating and can be a long journey. I wish you luck with getting some answers. One big thing with me is joint and muscle pain that is widespread, throughout my body with random swelling for no reason that they call angieoedema. (spelling???)

Join us in the chat room sometime and good luck moving ahead.

 

[Maia]

I would advise getting copies of your medical records and especially copies of any blood tests/urine tests/scans that have been done and seeing what all they have tested you for (& what has been found). Then you'll have that to take to other doctors to highlight for them what has/hasn't been found. I have found that they just don't have the time to review even short medical records and I'm sure by now yours has grown quite large.

There are many specialists that you can see that may help with your diagnosis. For your eyes an opthamalogist could help see if they are due to severe dry eye (common in lupus and Sjorgen's syndrome). I hope you have been sent to a nephrologist for your blood and protein in your urine (are they at low, moderate or high levels?). There are other things they may know to test you for that we don't.

The facial rash does not look like most lupus malar rashes to me either... but a dermatologist is another specialist I would advise going to as well to get a better idea if that is what it is or if it's something else.

Good luck to you and take care - keep fighting to find out what is wrong with you and I think you need to really push to see specialists and second opinions from other specialists if need be. If only "House" was for real & you could go see him, huh?

 

[regchev]

Thank you all for taking the time to reply. I'm really touched by all your kind wishes.