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Old 07-10-2006, 07:33 AM   #1
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Symptoms, lupus, from concerned -male- (Long post...)

Hello everyone. Beginning a few months ago, I've gotten many strange symptoms that, upon doing some research, I've realized sound a lot like lupus. I've done a lot of research into Lupus and read most of the posts on this site, and I'd like to make my own post and get some opinions.

Here's a list of every symptom I can think of that I have:


-From approximately one year ago, I've had a strange pain in my chest. When I first got it, it was extremely scary but I've gotten used to it. It's a dull pain around the lower half of my left lung. It seems to continue for months at a time, then mysteriously disappear. When it hurts, it also hurts to the touch
-My throat often gets sore
-Almost every major joint in my body gets very sore. This also comes and goes and sometimes only certain places hurt, its very strange.
-Additionally my body has become very VERY snappy lately. Almost every joint is extremely cracky and makes a cracking noise at even the slightest movement.
-I don't feel well almost all the time. I feel drowsy often, and am unable to complete an entire day of work without becoming exhausted.
-When standing up from a sitting position, my back cracks loudly, around where my pelvis is.
-No idea if it's of any relevance, but when I get a cut or any sort of rash, it seems to take forever to heal..
-My left hip joint is extremely strange. When I walk, it snaps every step I take, and I can feel something moving inside (tendons? The bursa surrounding the joint? No idea...). This does not hurt, however.
-When I lift my arm up above my head, the tendons in my arm snap loudly sometimes.
-Recently, When I twist my wrist around, I can feel the tendons (I think they're tendons) in my arm making a scraping sensation. This also does not hurt
-(again maybe no connection, maybe just dreaming this one...) In the morning when I wake up, my eyes seem very sensitive to the light. If its a bright day out and I got outside, I can barely see anything for a while..
-Concentration problems
-Usually on days off I feel relatively well. Especially when I have two days off in a row, the second day I usually feel fine.

Things I DON'T have:
-Butterfly rash, or ANY rash for that matter
-mouth ulcers
-irregularities in blood cell count
-any swelling of any sort
-nausea
-memory loss (not 100%, but I'm fairly certain I don't have memory loss)
-sensitivity to cold / heat
-headaches, heart problems
-rheumatoid factor and any signs that could point to rheumatoid arthrytis in my blood

Sorry for the long post everyone, but this is something I'm thoroughly worried about.

The sore chest started a year ago, and everything else maybe.. 5 months ago.

Also, I'd like to speak of my current situation:

I've a 22 year old male from Canada who is currently in Tokyo, Japan on a working holiday visa to study. I've been here since last August, and will return to Canada soon (August). While Canada is relatively cold, Tokyo is sub-tropical and is extremely humid and the summer days range from fairly hot to extremely hot. I have gone to the doctor maybe 6 times in Canada about my chest, and approximately 7 times in Japan since all of the above symptoms occured. Blood tests normal. X Rays (of bones in chest, of lungs, of knees, of feet) are always normal. No doctor ever even suggested Lupus or thought anything of it seemingly. I intend to go to the doctor again upon returning to Canada (it's expensive in Japan and I'm out of money...).

My questions are:

1. Everyone has already heard this question many times, but...
Avoiding a "go see your doctor then you'll know" answer, from those who unfortunately have Lupus, what do you think of my symptoms? Does it sound like a good probability of being Lupus to you?

2. Most of the people on this site are female, certainly because most Lupus patients are female. As a male, I know the probability of Lupus is less, but how many people here have male friends/relatives with Lupus (or ARE male and have Lupus)?

3. I've been working a lot in Japan. I've read medical journals and such, but I'd especially like to hear from actual people who've experienced this disease or these symptoms if possible: Does stress aggrivate Lupus symptoms? Also, could the hot climate be having a majorly negative effect on me?

4. I will be in Japan for another month approximately. I know the quicker I go to the doctor about this specific issue the better, but how dire is it that I wait the extra month to see a doctor in Canada instead of paying an extra large amount of money to see a doctor in Japan? Should I see the doctor here and have all the tests done, or wait until I get to Canada? Canada is free, while it will certainly cost me several hundred dollars in Japan...

I apologize for the length of this post, but I appreciate everyone who actually reads though it and gives me their input / opinions / recommendations, etc. Thank you very much

--Matt

 
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Old 07-10-2006, 07:55 AM   #2
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Re: Symptoms, lupus, from concerned -male- (Long post...)

You should be evaluated by a rheumatologist- explain your concerns & would like to be evaluated for Lupus.
Request a complete blood count, chem profile, and most importantly an ANA & dsDNA test. A positive ANA would lead to suspicion but not definite diagnosis & would warrant monitoring & possibly treatment if doc felt your other symptoms pointed to Lupus. A positive dsDNA would likely confirm Lupus.

Hope this helps--best of luck.

 
Old 07-10-2006, 10:53 AM   #3
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Re: Symptoms, lupus, from concerned -male- (Long post...)

Matt, You mentioned that cuts and RASHES take a long time to heal. What kind of rashes do you get?

I ask because there are lupus rashes OTHER than malar ( = facial butterfly). I have an intermediate "subset" of SLE called SCLE = subacute cutaneous LE. It's systemic---symptoms can cover the whole SLE range---BUT it's considered milder than SLE due to its lower odds of kidney & CNS involvement. My ANA was always negative, as can happen maybe 1/3 of the time with this form of lupus. My anti-Ro was positive & I was anemic for a very long time. My rashes were nonscarring & nondepigmenting, on upper arms and torso, and were targetlike (circular). There's also a second kind of rash unique to SCLE that looks like psoriasis but isn't.

This is also a roundabout way of saying that SLE is not the only kind of lupus.

There's also "discoid" = DLE, in which rashes tend to scar &/or depigment. In DLE, fatigue and arthritis are also often present. ANA is positive only 1/2 of the time, or so. (There are a few other kinds, too, like drug-induced & neonatal.)

As for chest pain that comes & goes, is something like an ulcer or reflux a possibility, in your mind?

Have your checkups included urinalysis, to make sure no protein is present?

So, could something else be doing this? I'm no dr. but I suspect probably yes. I was tested for mono, Lyme, endocrine problems, anemia, any number of viruses including Epstein Barre & HIV, etc.

As for waiting to see your Canadian dr.... Alas, Matt, you're probably the only one who can make that call intelligently. If you know what *exactly* what tests have been done (incl. urinalysis results), maybe that would help you decide.

The several men I know who have SLE were Dx'ed as teens, with major organ (kidney) involvement. And I've read articles by a few men who have "skin + constitutional + joints", meaning lesser forms of the disease (DLE, or SCLE, or mild SLE without major organ involvement).

As for heat, humidity and sun: sensitivity (including photosensitivity) can sneak up, year by year.

Would still like to hear more about your rashes, if you have a minute. Meanwhile, sending my best wishes. Hang in there! Sincerely, Vee

 
Old 07-10-2006, 05:05 PM   #4
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Smile Re: Symptoms, lupus, from concerned -male- (Long post...)

Hi Matt,
You said that you didn't get any rashes at all, but you say that they take forever to heal?
I think that this could be any number of things, but none that can't wait for another month. Are you stressed at work? (You said that you feel better when you're off of work.) Not getting enough sleep? Do you have a family history of arthritis?
Okay--answer to question 1.) I don't know if the symptoms manifest differently in men, but your initial symptoms do not match those that I had... I had night sweats, severe joint and bone pain (I couldn't even move at ALL without crying), rashes--big ugly ones that covered my face like a mask, bleeding under the skin--in spots all over my torso, fevers, skin pain, bruising... among lots of other things...
I would go to a doc when you get back to Canada and see what they think... I'm sure they'll run tons of different tests, so don't freak out when you see what they're ruling out (I had tests for everything from strep to AIDS).
Answer to question 2.) I have no older relatives with any connective tissue disease, although my daughter shows signs of developing connective tissue problems... but no men or boys at all in my family history with autoimmunity problems.
Question 3.) (first, quit reading the medical journals--even med students manifest all sorts of symptoms that they read about...) Stress aggravates all sorts of illnesses or syndromes. Stress can manifest its own symptoms (some of which line up with your listed symptoms). I doubt the climate is the problem--unless it's really hot and you're outside all day. In fact, cold weather is usually a culprit in the manifestation of painful joints for me.
Question 4.) If I were you, I'd wait. Your symptoms don't sound like they are the sort that make up an emergency visit. A month isn't very long, and any treatment you might begin in Japan will be re-evaluated when you start treatment in Canada. If you develop symptoms that are intolerable, like a high fever, or extreme pain, then sure--see a doc in Japan... but with what you list, it seems that you can hold out...
I do wish you luck--but rest in the fact that Lupus is very rare in men, and there are good treatments out there should you have it.
--Kristin

 
Old 07-11-2006, 06:50 AM   #5
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Re: Symptoms, lupus, from concerned -male- (Long post...)

Thank you everyone for the responses. I'd like to elaborate on my previous post and answer some questions.

First, VeeJ's question about the rashes:

Upon rereading what I wrote, I sort of contradicted myself. I said cuts and rashes take a long time to heal, then said I DON'T get rashes. Essentially both are true. What I should have said is that there are no UNEXPLAINED rashes. Nothing just appearing out of the blue, or anything as such. However I did scrape my elbow across a rough surface at work a while ago and it caused a rash that didn't heal too quick. I could just be dreaming. I should be a little more in detail about this "cuts and rashes not healing" thing: What actually take especially long to heal are insect bites and pimples. I had a pimple on my face about 5 months ago and it is gone, but in its place is a bluish spot that won't go away. Also, about bug bites, the place I was living at a few months ago had a lot of bugs and I was getting a lot of bug bites that lasted forever. I've since moved and this problem has gone away.

Due to the long heal times of cuts/bites/pimples etc, combined with the above symptoms, I was worried about Leukemia or perhaps Lyme disease. A blood test at three seperate hospitals showed zero trace of leukemia, and I was told by those same doctors that Lyme disease was also highly unlikely (no Lyme disease rash ever existed, no indications of Lyme disease, etc etc)

Otherwise, as far as skin is concerned, there are NO abnormalities I believe. No sensitivities, no strange unexplained rashes, no dry spots, no changes or flare-ups of acne or anything of the sort.

Other things to note:

Chest pain feels like a muscle pain in the chest area. I don't know much about ulcers, but when it is hurting, it also hurts to push on, and x-rays showed absolutely no abnormalities.

Urinalysis has not been done. When I went to the doctor's, I was always worrying about Rheumatoid arthritis and Leukemia and various bone diseases, not Lupus. ...

Kristin67's questions:

Father's side has a few people with rheumatoid arthritis. I AM getting enough sleep lately, but wasn't before. I'm quitting my job and taking it easy before I go back to Canada, so I'll be able to sleep all I want for a good month and a half, stress free (this can't be a bad thing .

Comparision to Kristin67's symptoms: Fever and pain are about the only things that match up. Perhaps instead of Lupus, I have a different mixed-connective tissue disease? Or something entirely different? Perhaps Lupus with a different set of symptoms?

Now a big of elaboration: Something I mentioned, but didn't stress enough I thing is the cracky joints (tendons?? something???? I'm not ENTIRELY sure what's cracking...)
I would say this is the number one scary frightening symptom. It's what initially had me thinking "What's wrong with me?!?" and what has been gradually getting worse. It's EXTREMELY cracky. I was serving drinks to a client today at work, and everytime I'd lay a drink or a coaster on the table, my arm would crack loudly enough that the people I was serving the drinks to seemed to catch notice and get slightly distracted from their conversation about. (Maybe a slight exaggeration, but they CERTAINLY took notice.) Every step I take makes a notable snapping sound, enough that the person I'm walking with will say "what is that??" I don't know how to give a good comparision, but maybe approximately the same sound as a person that can snap their fingers really well when they snap their fingers. Not quite so loud, but the same sort of noise. When I do push ups, my shoulders will crack loudly every single time. If I don't move for a long time, then move again suddenly, multiple places with crack loudly. This is especially so when I wake up in the morning. When I get out of bed, I crack a good bit. Recently the most cracky areas are my wrists. My tendons also feel tight all over my body. Again, none of this hurts when the cracking happens, but there is a general pain in a lot of my joints. The hurting joints and cracky joints don't necessarily match up though. For example, on a given day, my left knee hurts and both elbows are extremely sore, and my elbows crack and my feet crack. The next day, perhaps my wrists and both knees hurt, and my neck is cracking like crazy, but the other areas aren't too bad. It's extremely strange and worrisome.. This coupled with some other symptoms (many Lupus-like) are what I'm going through pretty much daily now.

As an additional question to be put forth, can anyone think of anything else this could possibly be?? Any other things? I've researched other connective tissue diseases. I'm not entirely sure, but Marfin Syndrome and Polymyositis seem unlikely, and R. Arthritis was ruled out by a few blood tests apparently. With all my searching, I found the most likely to be one of Lupus, Lyme Disease, Scleroderma. Again, I'm not entirely sure, but can anyone give any ideas?

Thanks again everyone for every bit of help! Still worrying quite a bit though..

--Matt

 
Old 07-11-2006, 09:25 AM   #6
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Re: Symptoms, lupus, from concerned -male- (Long post...)

I think just about every bone in my body cracks, even my sternum when I get up in the morning. (kind of odd, since I didnt think those bones move, but whatever). WHat I got from your post seems like this...like when someone cracks their knuckles or back it makes that loud popping or cracking sound. I have never brought this up to any of my docs only b/c I think it's nothing to worry about (from what I've read and heard, at least). Now when I get a lupus flare or muscle spams from my spine problems, I find I cannot crack my joints at all, nor do they crack on their own when I walk. It seems if I have swelling, they just won't crack. I've always heard that docs don't think cracking joints cause much harm (unless of course you have some serious condition or osteoporosis where your bones actually get brittle and break)

Have you been checked for diabetes at all? I only ask this because if you've been taking really long to heal, this could be possible. But there are other conditions that can cause slow healing; even too much stress can do that. NOT to say that it's all in your head (I know ive gone through that before) but it is possible.

 
Old 07-14-2006, 03:12 AM   #7
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Re: Symptoms, lupus, from concerned -male- (Long post...)

Hi there. I just joined the board, in order to answer your questions. I have been diagnosed with lupus for almost three years. Your symptoms are not really consistent with much I've read on lupus (read the whole medical manual - Dubois'). They sound more consistent with fibromyalgia or chronic fatigue, or both, or as you suggested MCTD, though unlikely if you have tested negative for RA despite cracking sounds.

I'm not a doctor, so I can only suggest you continue to investigate for yourself. Also, I don't know any men with lupus, but I have read in the books that most men have an earler onset of symptoms (teens or childhood) and more severe issues like kidney problems. Slow-healing wounds I personally have not heard of as an early symptom of lupus. I've heard of it for later complications such as diabetes secondary to lupus. I guess in short it seems your symptoms generally don't match up - but don't stop looking for the answer - keep bugging those free Canadian doctors! Good luck.

 
Old 07-14-2006, 08:06 AM   #8
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Re: Symptoms, lupus, from concerned -male- (Long post...)

Not sure if this has been mentioned but have you been checked for Lymes?

 
Old 07-14-2006, 03:43 PM   #9
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Re: Symptoms, lupus, from concerned -male- (Long post...)

Hi Matt,

I'll jump in to add a few thoughts...
* The stickies at the top of this thread about symptoms are really helpful.

* I had the mouth ulcers, but so small and painless that I didn't know they were there. My dentist found them on my 6 month checkup.

* Men do get lupus. One famous person who had it was Charles Kuralt who was on TV in the US and who wrote books.

* An inexpensive way to see if you feel better is to avoid the sunshine between 10am and 5 pm or, if outside, to wear clothing to cover you, a broad brim hat, and SPF 45 or higher sunscreen. For some reason, sunlight makes the lupus symptoms ( fatigue and arthritis) worse and can bring on a flare. If you feel better after a week or more of staying out of the sun unless dressed like it's winter (almost), you could have lupus and it is worth checking out more fully when you can.

* Before you leave Japan, request copies of all of your medical tests and records (in English, if possible!) as they'll help your doctors at home have a better understanding of your overseas health problems and care.

Wishing you well - Barbara

 
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