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I had a friend of mine say that his mom's doctor (she has lupus) say that part of the problem with dx of men with lupus is so many men have the "macho mentality"; no offense meant; but how many guys will play off symptoms alot :) My husband is SOOO bad about it; and I can see it. Oh my legs hurt; ran too much on the bball court; oh arms sore, lifted too much, oh I'm tired ;didn't get enough sleep; that sort of thing.
I don't know about some of the men here on the board; but getting my husband, father and grandfather to the doctor is like pulling alligator teeth :0 just don't happen. They won't go; refuse to go; don't need to go; whatever.. so i can see many men that may have it not getting diagnosed! For those that did; GOOD FOR YOU!! for seeing a doc and getting to the bottom of why you felt so crappy instead of playing it off.
Ryan; I hope you find something out soon; it's horrible waiting; I am too and I HURT and just want some answers! Good luck!

As for the balance and such; have they looked at Multiple Sclerosis? My mom has alot of those symptoms that you mentioned and was diagnosed with MS; again more women than men that have it but still men do have MS; the blurring vision, headaches and balance are what make me wonder... and MS is a hard one to diagnose too ...

Jen
Ryan.. I'm a 50 year old female and have had Lupus symptoms for over 22 years now. They just now got me DX'ed on it. But out of the last 5-6 yrs. I've had pneumonia's that they couldn't get cured with antibiotics that has taken a big tole on my lungs... (I only have 54% of my lungs left from scarring.) My symptoms too come and go from day to day. One day I'm up and moving fine, next day I'm down for 2 days because of lungs hurting and over all fatigue. I believe a lot of this has to do with where the inflammation is in your system at the time. And yeah.. it moves around to different spots also.. :( I also think it has something to do with what I eat too. Some foods I'm sure make my inflammation worse, and at different times worse in a different spot in my body.. and leaves the other spots alone.. go figure. Just my opinion, but there it is..
I have had some of your symptoms also.. the dizziness, the being off balance sometimes, etc. I believe it has to do with if the Lupus is affecting the brain or not. My left arm goes numb sometimes too... but I think this has something more to do with if the Lupus is effecting the heart or heart sac.. I've had heart palpitations for years with this. I also have my left leg go numb sometimes too.. but I know for a fact it has to do with how much inflammation is in my back and sacroiliac nerve at the time. The pain on this is not cool, let me tell ya.. It shoots down your leg from your rear end to your calf. And will continue to do this all day long if it's nasty that day. We all seem to forget that Lupus is an inflammation problem in the system. (via the immune system eating itself..) And all organs are connected to each other in different ways. So if one organ hurts, more times than not something else is going to be effected by it.

If it was me... I think I would find a doc that knows Lupus.. inside and out. And you can do that by asking around on the phone to different hospitals in your area.. call and talk to the nurses at a nursing station in the ER... or surgical wing of any hospital.. The nurses are your main stay on what doctor is good at what. Them guys should know.. they work with them same doc's 24/7.. Ask them for their opinion on any rhymie that they know is good. And who they would recommend, or take their own Mother too.

Any way it goes.. my prayers are with you.. and I hope very much that you find help with this soon.... please keep us posted on ya.. :)
[QUOTE=Pixii]Ryan.. I'm a 50 year old female and have had Lupus symptoms for over 22 years now. They just now got me DX'ed on it. But out of the last 5-6 yrs. I've had pneumonia's that they couldn't get cured with antibiotics that has taken a big tole on my lungs... (I only have 54% of my lungs left from scarring.) My symptoms too come and go from day to day. One day I'm up and moving fine, next day I'm down for 2 days because of lungs hurting and over all fatigue. I believe a lot of this has to do with where the inflammation is in your system at the time. And yeah.. it moves around to different spots also.. :( I also think it has something to do with what I eat too. Some foods I'm sure make my inflammation worse, and at different times worse in a different spot in my body.. and leaves the other spots alone.. go figure. Just my opinion, but there it is..
I have had some of your symptoms also.. the dizziness, the being off balance sometimes, etc. I believe it has to do with if the Lupus is affecting the brain or not. My left arm goes numb sometimes too... but I think this has something more to do with if the Lupus is effecting the heart or heart sac.. I've had heart palpitations for years with this. I also have my left leg go numb sometimes too.. but I know for a fact it has to do with how much inflammation is in my back and sacroiliac nerve at the time. The pain on this is not cool, let me tell ya.. It shoots down your leg from your rear end to your calf. And will continue to do this all day long if it's nasty that day. We all seem to forget that Lupus is an inflammation problem in the system. (via the immune system eating itself..) And all organs are connected to each other in different ways. So if one organ hurts, more times than not something else is going to be effected by it.

If it was me... I think I would find a doc that knows Lupus.. inside and out. And you can do that by asking around on the phone to different hospitals in your area.. call and talk to the nurses at a nursing station in the ER... or surgical wing of any hospital.. The nurses are your main stay on what doctor is good at what. Them guys should know.. they work with them same doc's 24/7.. Ask them for their opinion on any rhymie that they know is good. And who they would recommend, or take their own Mother too.

Any way it goes.. my prayers are with you.. and I hope very much that you find help with this soon.... please keep us posted on ya.. :)[/QUOTE]

Hi Pixii,

Sorry for quoting your entire post, but I didn't want to miss anything!

My lungs hurt also, its one of my main symptoms. Taking in a full, deep breath is painful and nearly impossible, yet the X-Rays and CT scans do not reveal any problems.

For the cardiac related problems, I have had an Echo and Thallium Stress Test, neither of these revealed any abnormalities either. The EKG is abnormal for unknown reasons. The rapid pulse was diagnosed as "an unexplained electrical impulse problem", I was put on 50 mg Atenolol for it, but it does not work very well.

I couldn't even begin to imagine living with these symptoms for 22 years, 9 months is bad enough! I sincerely hope that your doctors are able to resovle the problem, and to start you on a treatment that will help.

I haven't had Pnuemonia as of yet, but back in April, I contracted Bronchitis three times in a row. The strange part is, I could actually breath better while I had the Bronchitis!

Food has a major impact on me as well. I have been experimenting around trying to find things to avoid. White bread sets off a chain reaction of symptoms 99% of the time, same goes for high sugar junk food. Wheat bread, crackers, etc help the problem. I have also been taking Glucose tablets, and they seem to help.

In addition to food reactions, I'm having some stomach problems. If I swallow food, I can hear it "churning" on the way down, even fluids do this. Eating also induces a rapid pulse. The rapid pulse in turn, causes shortness of breath. For this reason, I do not eat during the day anymore. Since Septemeber, I have lost 75 lbs (I'm 6' 3" and used to weigh 250 lbs).

The numbness always starts on the left side (in the neck), and quickly moves to the right arm and right leg. From my observations, it seems to be from a lack of Oxygen (always occurs with shortness of breath). I don't think it is Neurological.

Even before the initial onset back on Sept 8/04, I never was quite right. I worked a few industrial jobs which exposed me to chemicals, chemicals which I believe to have caused this (Benzene, Carbon Tetrachloride, Methyl Ethyl Ketone, Xylene). One of these probably "did me in". I'd be curious to know if any of them can induce Lupus.

Take care,

Ryan





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