[Raider1111]

Hello all

I have been feeling unwell for quite sometime now (over 2.5 months) which i originally thought was sexually related. But after repeated STI screenings including 3 repeat negative HIV tests at 1 week, 6 weeks and 10 weeks im begining to think this is something else, as I always practice safe sex anyway so it has to be something else.

I am a 25 year old man.

These are my symptoms

- I have the typical butterfly rash across my nose and cheeks which gets worse when Im out in the sun or have been drinking alcohol. Iv had this rash since as long as I can remember but I always just thought it was Rosacia

More recent symptoms in the last few months include:

- painful swollen lymph nodes
- migratory joint pain....only mild and only had 1 spell which lasted bout 2 weeks.
-cluster type headaches
-fatigue and general lethargy.
-intermitant low grade fever.
- weight loss of 5kg.
- microscopic blood in urine test, but kidney tests were fine. Second urology showed no blood in urine.
-fluctuating steplococyl titre (ASOT) non responsive to anti biotics, but are now starting to decline.
- steadily decling white blood cell count.

My GP has refered me to an infectious disease specialist and if that is no help a ruematologist will be next.

Liver, Kidney, thyroid tests were normal.

-Tested neg for Mono twice (apparently Iv already had it)
-Negative for CMV.

Blood tests within normal ranges (accept for declining white blood cell count).

any feed back would be greatly appreciated.

 

[Maia]

You've had about the same workup as me (except the HIV part) when I first got sick. It sounds like your doctor is working this in the right direction in terms of sending you to specialists. Lupus certainly does seem like a possibility given your symptoms.

Has the doctor done the ANA test yet (just a screening test for autoimmune disease)? My doctor ran the ANA test (& then the follow up more specific antibody tests after that was positive) and then immediately referred me to rheumatologist with all test results ready in time for that appointment..

One other thing to consider testing for is hepatitis C as it can cause similar symptoms to lupus. I hope you get some answers soon.

 

[Raider1111]

Hello Maia

Thank you for your speedy reply

Yes I have been tested for Hep C, twice in fact, with negative results. I will enquire about ANA test when I see the specialist.

Theres a few other symptoms I for forgot to mention.

- recent hair loss ( no great lumps or anything like that, but when I run my hand through my hair lots of strands come off onto my hand.)
- im also itchy all over on and off.

I just cant understand all this. I used to be so fit and active, heaps into sports et...now I feel heaps debilitated.

 

[Taree]

Hi Raider.

Sorry I can't help you pinpoint your symptoms but I do know what it's feels like to go from being sporty to feeling debilitated.

I used to play every sport under the sun! - literally! I'm a bit of an extremist so when I was diagnosed I quit everything which was very depressing... and very dramatic for a 15yr old. It took me a while to realise that I didn't have to deprive myself that way so now it is 16yrs later and while I still miss spending all my time in the sun, I can now spend measured times enjoying it. It's also amazing what a variety of sport there is to choose from that won't be too taxing but will still give you a satisfying workout.

Check with your doc how sport will affect you, hope you get answers soon, limbo's the worst!

X T X

 

[halfpintfl]

Hi Raider, I am sorry that the wind has gone out of your sails, I have been in your shoes, so I know what you are feeling. If I were you, the first thing I would do is ask my GP for a referral to see a Rheumy. It sounds like you have
possible Fibromyalagis. If you have possible Lupus, He would be the Dr. that would diagnose you for that. So, as I see it, that's where you need to go. Let us know when you make your appt, cause you will need to make your list.
Take care, and remember:"The Sun is Your Enemy." As for that face rash, I would suggest that you go to a Dermy to have that diagnosed. He should be able to do it, as skin is all a Dermatologist does. Wishing you the best.:wink2: ​

 

[Raider1111]

Hey

Thanks everyone for your suggestions. I will def' take on board.
I was wondering if anyone had swollen painful lymph nodes when they first came down with the illness. Also the fever and headaches are quite bothersome :sad:

Also does anyone have any theories as to what might have triggered there illness.....

Strees, Environmental factors, Viruses, bacterial infections etc.....?

 

[Lily]

Hi Raider,

Having swollen lymph nodes is very common with lupus, mine arent usually painful though, they are just there and lots of them. They are much more prominent when flaring.

The infectious disease expert should run loads of tests on you, so they should at least discover something, I'm glad you have a referral

Personally I think it takes a lot of factors to result in Lupus. I had a pretty whacky immune system as a child, lots of severe allergies etc. manifesting in different ways. Add in stress and that can be physical or psychological, viruses like Epstein Barr and everything else we pick up during our lifetimes and I think it's possible for the immune system to turn on itself. I dont think my environment contributed too much, I always had a good diet, looked after myself fairly well etc etc. I did however work somewhere for about a year which some decades later was closed down until they corrected some environmental issues they had. Interestingly and sadly enough there were about 7 of us working there and 3 out of the 7 contracted breast cancer which seems high odds. And I got this wonderful thing called lupus..........so did it have an effect, maybe it contributed I don't know.

love
Lily

 

[Joandublin]

Hi Raider

Interesting question...

I have no idea why I happened to develop Lupus. I remember as a child that I had loads of allergies. We used to spend holiday times in a seaside resort just about 20 miles from where I lived but I was known to develop hives every time we were there. Everyone figured it was the local water causing the problems. It was so bad that my mother went to a well known chemist at the time who mixed up a 'special' brew for me (god knows what was in it!) and I would have to drink this concoction every time I went on holidays. I have no memory if it helped the hives but I remember how horrible it tasted:worried: Actually I do have a memory...my holidays always equalled itchiness..

I also had an 'allergy' to tomatoes, strawberries and citrus fruits. I would break out in hives within about 20 minutes after consuming them. My extended family were all warned not to feed me any such things!

Thankfully I grew out of most of my allergies. However if I eat too many strawberries I am still itching like a mad thing!

One other thing that I should mention. Just prior to my worst every flare, I was in a most extreme stressful situation. I often wonder if it contributed? Then again I was also taking Echnicea hno:hno: for about two months previous. That was on the recommendation of a friend who felt it would 'sort me out'!

Ah well...someday it will all be figured out. For now though, I just look out for potential triggers..

Take good care
Joan:rose:

 

[Maia]

I had very few health problems as a child - no allergies (although my nose did run something awful when we rode down into the Grand Canyon on mules). I think I ate relatively well but always disliked veggies until much later as an adult when my taste buds have dulled I think! *laughs*

I don't think I had more illnesses than typical until my senior year of high school when I was sick constantly for some reason. Even then it was just something like a cold that would run it's course every 3 weeks or so with 7-10 days of cold symptoms.

They do not know the cause(s) of lupus, but the best working hypothesis at the moment is a combination of genetic susceptibility combined with some environmental trigger. Virus, bacteria, a chemical exposure/substance (for instance, I read that a work exposure to asbestos has been linked to much higher rate of ANA positivity and symptoms of illness). You'll never know the cause in all liklihood - I hope someone does some more research on the matter. Seems like very little is done regarding this question.