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11-30-2008, 01:24 PM
Hello, I am still being diagnosed. I am a male, 33 years of age and have been having serious brain fog and very dizzy and nausiated at times. I just found out last week that I have a positive ANA and my SSA is 580. My white blood count is at 3.2. I don't know what that all means. My doctor told me that I should go to a rheumatologist. My other symptoms include back pain along the spine and my foot goes to sleep when I get up and walk around. Does this sound like Lupus? I really don't feel a lot of pain or fatigue. I have not had any mouth sores. I have had some minor joint pain that comes and goes. I don't run any kind of fever. This all started back in June. I had chest wall pain for two or three days. I then got flu like sickness. I had all of it for about a week and was not getting better, so the doctor put me on doxycylene for a possible lyme disease even though I tested negative. I took it for about 4 days and felt like I was beack to normal so I stopped it. Then about a month later it all his me again. I was sitting at the computer and eating and just started feeling very nauseated, tired and acid build up in my stomach. I started back on the doxycylene for 10 days and felt a lot better, but since july I have been getting worse. The main thing that I have now is the back pain that comes and goes, tingling in my foot when I walk and dizzy and nauseated most of the time. I hope this was not too much. I am just scared because I have a family of three that depends on me to work everyday. I am in the military and have been for 15 years. Thank you and God Bless everyone that visits this site.
11-30-2008, 01:55 PM
And welcome to the site.
Lupus show's it's self in many ways. We all share some traites but not others. Lupus can take on many forms.
I'm glad your doctor is refering you to a rheumy, it's the best course of action.
For now ... try and stay out of direct sunlight. It can bring on some of symptoms you mentioned. If you have to be out in it make sure you cover up and wear a really really good sunscreen.
Once you have been assessed by a rheumatologist, they will probably start you on a medication. You should also ask your doctor for a referal to a physical therapist about your back issues.
They should be able to assess what's going on there and make some helpful recommendations.
I know this is nerve wracking...you're just starting out and have alot of questions and doubts.
There are alot of us who are working, raising families. Yes it's a struggle, but once you have a treatment in place you will have more good days than bad days.
This is not a very predictable condition. There are lot's of treatments available. It's really all about you and how your system is reacting.
Please try not to worry to much about this (stress is a big ol trigger to lupus) aint that ironic? hahahaha
Any way, there's lots of great people on this site with tons of info, feel free to read any post that catches your interest. There are a few guys on this site. Ask any question you like.
I'm sure the others will be along soon to welcome you, if rob hasn't managed to post a response ahead of me while I'm typing this...I'll be surprised. :lol:
11-30-2008, 02:10 PM
Welcome to our family :lol: . I am glad that you found us and the first thing that I want you to know is that you are not alone.
No two persons suffer from the same symptoms with Lupus. So, you may never develop the mouth sores or run a fever.
Lupus is an immune disease that can attack all parts of the body, including many internal organs and tissues. Most damage caused by lupus is due to inflammation. The common parts of the skeleton that can be affected by the inflammation of lupus are the peripheral joints - the joints away from the spine, such as the small joints of the hands and feet, the wrists, knees, elbows, ankles, and shoulders. Lupus commonly causes arthritis and/or arthritic pain in these joints. The spine is generally spared from the inflammation of lupus.
However, Lupus can cause neck and back pain because the muscles supporting these structures can become inflamed by lupus. Furthermore, many of us with Lupus also suffer from the muscle pain syndrome called fibromyalgia. Fibromyalgia can cause pain in these areas and it is quite common to have this illness as a overlap with lupus.
Moreover, cortisone medications that are frequently needed for lupus can weaken the bones of the spine, leading to breakage (fractures) of vertebrae.
Also, there is a rare complication of lupus that involves inflammation of the spinal cord. This complication is known as transverse myelitis and it can be associated with back pain.
Finally, neck and back pain most frequently result from injury or wear and tear (degenerative change with aging). This is true in the general population and is also very true for patients with lupus. However, there are many other causes of pains in these areas, ranging from organ disease (such as kidney problems and others). It is not uncommon for Lupus to cause varying degrees of kidney problems, up to and including kidney failure.
The development of other signs and symptoms in lupus varies, depending on the organs affected. Lupus can affect the nervous system which could cause headaches, seizures, changes in personality, and confused thinking (we call "Brain Fog") may occur. Nausea is common with Lupus patients and often, it is related to kidney function (If it is not a side-effect of medication). However nausea & vomiting can also be caused by arteritis in the stomach or small intestine. It may also be caused by a "pseudo-obstruction" (motility issue most likely caused by arteritis) of the intestine.
Lupus can also cause Peripheral Neuropathy. The peripheral nerves are the nerves located in your face, arms, legs, hands, feet and torso. When these nerves do not communicate properly with the spinal cord it is called peripheral neuropathy. This can cause pain, numbness, tingling, burning or itching.
Your doctor is absolutely correct in wanting you to see a rheumatologist. With the symptoms that you have listed, I would also suggest that you do this as soon as you can. In "Newly Diagnosed", there is a sticky outlining the tests and criteria needed for a Lupus diagnosis. Read these so that you can have a better understanding of the tests that your rheumatologist will want to run, why they are necessary and what their results mean.
In the meantime, we are here to help you as much as we can. Please let us know when you will be able to see a rheumy and keep us advised of your tests results and how you are doing.
Peace and Blessings
11-30-2008, 02:21 PM
I would like to know what you all would do in my case. If I go to the doctor and she says that it is Lupus and my symptoms are minor right now. Would you still ask to be put on medications right now? What medications would you suggest? I have a cousin that has Lupus and she told me to ask for cellcept. What is that used for and why would I want to ask for it? The other question that I have is, I am in the military and have 5 years untill retirement. Do you think that I will be able to finish my 5 years in the military? I feel like I am in good shape. I have to do a physical fitness test once a year. Thanks for any help you can give me. Are there any guys on here that have Lupus? Is it known to be harder on guys than women? Thanks for all your help.
11-30-2008, 02:38 PM
Welcome to the site. Saysusie gave you some good advice. My name is Kathy and I have SLE Lupus and Sjogrens and some of the other Auto-immunes. I think that you are worried about being put out of the military if this turns out to be Lupus. I think in your case that they would not do that, but they may keep you from going over seas if you go on medications. I think if you have over 12 years in they do not put you out. I know they did me, because I did not have enough time in and I was in the reserves at the time.
I do not understand why your relative told you to ask to be put on cell cept. I believe they use that drug if the kidneys are involved. Usually they will put you on Plaquenil. Plaquenil is one of the leading drugs in the treatment of Lupus and Sjogrens.
I see where you state that you have a positive ANA and a high SSA antibody. I am wondering if the ANA pattern is speckle patterned. If it is then it could mean that you may have Sjogrens. Do you know what your SSB level is? When you see the Rheumatologist he will sort it all out for you. I am also wondering if you have a problem with dry mouth or dryness in your eyes? This would also be an indicator of Sjogrens Syndrome. I hope that you get some definitive answers from the Rheumatologist.
Rob our moderator here has Lupus and he is wonderful. He has a wealth of information about men having this illness. Please keep us all posted sir.
11-30-2008, 02:46 PM
There are some out there who think that lupus only affects females. Pfft...they are WRONG.
Lupus can affect each person differently even though we share some of the same symptoms.
Your doctor will let you know if he/she feels your system is in enough of an up roar that you require medication. There are a few choices out there so ask your doctor to discuss the pros and cons of each.
Yes there is a good possibility you can make it to retirement. Mostly it depends on your own system. There are medications out there that can certainly help you to maintain an active life style. But it's the lupus that has the final say.
I'm not fully diagnosed, my mother had lupus and my sister is diagnosed. I've had a couple of possitive ANA tests, butterfly rash malar rash, my feet knees and rib cage have been affected with arthritis.
When this first hit, I could barely walk. I was in constant pain and always swollen.
I am still working, I work out now and I manage quite well. I'm on plaquenil and arthrotec75. You will have to go through trial and error to find the drug that works best for you.
I went through 4 different drugs before I found the ones that work for me.
They always start with the soft drugs. The ones that have the least amount of nasty side effects. If those fail to help then they move up to the others.
YES see your doctor and discuss this further with her and get her to refer you to a rheumatologist :)
The sooner you get the ball rolling the better.
My name is Rob, I'm 40, and was diagnosed with Systemic Lupus in 2004. I used to be in the military. I spent 6 years in the Army. Mostly at Ft. Knox. Used to be a tank crewman on an M-1 Abrams. I was discharged in 96 and worked as a civilian contractor for the DoD for quite a few years until I had to retire due to Lupus in 05. I hear, and understand your confusion, and your fear. I won't lie to you, you may very well have Lupus. Like you, my symptoms, at first, were intermittent, and seemingly unrelated. I had problems with pleuresy, I still have costochondritis, which is an inflammation of the soft tissue around the rib cage, and I've had stomach and lower back pain on and off for years. It never made sense. The symptoms would come and go, never really forming a pattern.
I also have terrible brain fog. I forget the most basic of things some days, yet other days, I'm still fairly sharp. I agree, that you should take the next step of seeing the rheumotologist you've been referred to. Lupus, is a distinct possibility, and the only way to deal with it, is by getting a proper diagnosis, and if diagnosed, going ahead with a sensible course of treatment. Until that happens, try not to worry about the possibilities beyond that. It is different for everyone. Some people have Lupus flares constantly, some, have minor problems with only minor effects, and some even have remisssion with no lasting effects. Just know this, there are people who live long, productive lives with active Lupus. We have members here, who have lived with the disease for many years, and thrived in spite of it. Each case is as individual as the person who is diagnosed with it. If you do have this, know that it can be managed, it's not an end by any means. Please, feel welcome here, and let us know what you find out. Until then, hang in there the best way you can, you are not alone.
I just saw your new message. For me, Plaquenil is the most effective drug I take, and for me, and many others, it has very few, if any side effects. Observation by an Opthamologist is needed due to a very small portion of people taking the drug having retinal damage, but that's the exception, not the norm. I'd mention Plaquenil to your Rheumotologist.
11-30-2008, 03:38 PM
I had a really crazy rib pain about 6 months ago. It was very tender to the touch. I could not figure out what it was. What do you do about the brain fog. Is that a flare up? I get this just about every day and it will come and go. It seems that my symptoms are better in the evening time compared to the day time, even if I stay inside all day. Do you think a bout of chest wall pain back in 2003 and a kydney stone that same year would be related to this? The other Big question that I have is, I get very nauseated every day. It feels like it is in the lower part of my belly and it seems like it is about two hours after I eat and I will also feel it is I go a while without eating. Have you ever had that feeling? Has your Lupus affected any of your organs? Is Lupus normally worst on men compared to women? Thanks for any answers that you might have.
I have some serious rib pain on a regular basis. It can be enough to stop me mid-sentence, and make me cringe. In my case, it's caused by Costochondritis. As bad as it feels, it's not something that can cause any permanent damage, and is quite benign depite how badly it can hurt. I don't know if this is what you have, but your symptoms do sound like it. I take the NSAID Naproxen Sodium (Aleve) with food and it helps quite a bit with the pain.
Brain fog. That's a tough one. I don't do anything about it other than endure it till it's over with. I personally have not found anything that helps me. I know there are others who have taken some meds for it and had some positive results, hopefully they will see this and share any pertinent info.
Regarding your nausea, I have not had that problem on a regular basis, so I have no useful info for you on that. As far as organ involvement, as bad as my flares have been, I have had no organ involvement whatsoever. I do have some nerve damage from MS, but it is unrelated to my SLE as far as I, and my neurologist know.
I have been told, and as a man, sometimes believed that Lupus is worse in men than in women. But in reality, I talk to many women here who have experiences and symptoms at least as bad, and in many cases, are worse than I have experienced. So I can't verify that beyond just rumors and hearsay. Maybe it is, maybe it isn't. The important point is, in both cases, it can many times be controlled, and a person can still lead a productive life. I know you are scared, and have a ton of questions. The answers will come, and you can deal with this. Talking about it is one of the best things you can do right now, and that's why we are here.
11-30-2008, 04:09 PM
What symptoms did you have that sent you to the neurologist? I just wonder, because I have read that MS and Lupus have a lot of the same symptoms. How do they tell them apart? Is it common for people with Lupus to also have or develop MS? How often do you have to go to the doctor? I just wonder how many doctor appointments I will might have to go to. I am a Recruiter right now and it is a very stressful job. I often wonder if this is what has brought it out? I have been recruiting for over 3 years now and have about 8 months left and the military will not move me from this position. I get no sympathy from them. I am so afraid of getting sick this time of year, because I have to shake a lot of hands and go out to the schools to meet with kids. Are you still able to get out and do a lot of things? I have two kids, one is 13 and the other is 8. They have already seen a difference in me. I just don't feel like doing the things that I use to. Mainly because I am very nauseated and dizzy and scared that if I do something it will make me feel worse.
I first was referred to a neurologist after taking a couple of hard falls. My right leg will just "switch off" as I call it, and I'm headed for the floor. My foot on that side will drag, I get electical shock type pain in the leg and foot. I have the same problems with my right arm, and I also have optic neuritis in my right eye. It's inflammation of the optic nerve. My problems are related to what's called de-myelination. Myelin is the sheath of insulation that covers nerves. MS causes this sheath to wear away, and like two stripped electrical wires, when they touch, they short out. This blocks or disrupts nerve transmissions causing my falls.
People with Lupus can also be diagnosed with MS obviously, but it is not very common. It's called an overlapping illness. The two diseases do have some similar symptoms, and people have been misdiagnosed with either disease. Lupus that's really MS and vice versa. As far as doctor appts, it's hard to say how many you will end up going to. In my opinion, between the neuro, rheum, MD, and eye Dr. I go alot. No real way to control that, you just have to do what has to be done I guess.
I understand your trepidations, and your need to look professional and healthy in public. You are certainly a public face, and spokesman for your branch of the service. Back in Arizona a friend who I went to armor school with changed his MOS and became a recruiter, and it was a tough job. Some days I'm able to get out and do alot. Others, I'm housebound. There's no rhyme or reason to it. I have to deal with the fact that every morning has the potential of being the start of a bad, or good day for me, and that I have to be flexible in my daily plans. Not too difficult as I'm now on full disability. For someone who is employed, it can be a nightmare. Sympathy and understanding can be nearly non-existent at times. Nothing for you, or I, or any of us here is set in stone though. You should try to take things one day at a time. I know it's easy for me to say that, but far tougher for you to do. Just get by the best way you can until you get a proper course of treatment for what this actually is. Like I've said, Lupus is as individual as the person who is diagnosed with it. If you are diagnosed with Lupus, you could very well do just fine and respond to meds. Waiting for answers is hard though.
12-01-2008, 05:18 PM
I read what Rob wrote about looking strong in public. It is hard to do when you feel so lousy. I am a pediatric nurse and work 12 hour shifts in the peds ER. I spent 2 years with no one knowing there was anything wrong with me but then I went into a bad relapse after I had my youngest child and had to take FMLA. I now have intermittent FMLA in place for when I am feeling really bad, but I try to use it as little as possible because even though my co-workers know that I have Lupus now, they don't understand it.
I try to keep a brave face on at work (and in front of my kids) and smile or joke through the pain, but it is tough most of the time. I usually hurt so bad by the time I get home I can barely make it into my house. I asked my nurse manager if I could work 8 hour shifts instead of 12, but she said no.
People that do not have the disease do not understand what we go through. There is a great letter written from the viewpoint of a Lupus sufferer. If you do a web search and type in "The Spoon Theory" you will find a letter that will hit home. I shared it with all of my family and co-workers. I can't say they will ever know the true pain, but they are more sympathetic now.
Good luck to you.
12-01-2008, 06:31 PM
wanted to say hi, I just found this site last saturday. I'm 62, I've lived with this lupus crap since 1990. I would like to tell you up-front this illness
is an imposter, lupus will show many faces before it finds a settle point. so
take your time [I know that's hard] pick the best doctors,nurses,techs.,labs. you will learn to speak up with all the meds.
that may be thron at you. I went through alot of bad,bad meds., and I
found all the quakes in this area,when I did find the best,they have saves
my life. also I still live alone,do everything my self. that comes from the
excellent care. I wish you all the best.
plunk, thanks for your service, as I am one you help protect.
may the Lord watch over you !!!!
12-03-2008, 06:07 AM
I was just thinking about you and wondering how you are doing. I hope that you have a pretty good day today.
12-13-2008, 10:45 AM
Does anyone know if Lupus for sure is worse in males? Where can I find some good answers on this?
12-14-2008, 06:11 PM
I have heard a couple of people on this forum to state that the disease us usually more difficult on men. There are a couple of guys who I am sure will respond to your question.
Good luck to you in your process,
12-15-2008, 05:48 AM
Just to say hello and welcome and i am thinking of you.
12-15-2008, 03:52 PM
Here are some websites and articles that you can read about Lupus and men:
Peace and Blessings