Hello!
I haven’t posted in a while, but read my reports of new topics, etc sent to my email address.
I have had a couple of ups and downs in the last 2 months due to heavy menstrual bleeding and my anticoagulants. Now it’s all under control, but the first time in June, I was hospitalized for 4 days.
I had my 3 month visit with my Rheumatologist last week and I have some interesting information on the TYPES OF LUPUS. I asked because I keep reading that there are 3 types. Then again when I say that I also have the Antiphospholipid syndrome I say "why isn’t this a 3rd or 4th or 5th category?"
After all I read about patients having all these “different” types of lupus and they’re not in any category. So I asked him. He said “there are not types of lupus, only the severity of it changes. Example is the level of your kidney function which is at 3. So there are not TYPES.” I was surprised. Anyone has this question too? I’m looking for an answer so I can explain non lupus patients what this disease is about. It affects so much more than kidneys and skin, etc. Shouldn’t there be categories/types?
Hello, I’m new here. I understand what you are saying about hormones and health issues. I grew up with Epilepsy because of an idiot doctor rushing through my birth.
It always caused my major seizures before during and after. I was not diagnosed with lupus though, till Back in 2012. So I don know how long I’ve lived with it. I know that with it I also was diagnosed with RA, Graves Disease and have been to different doctors for each problem.
I have SLE kind of which I was told is caused by the medicines I take to control my seizures So I can’t seem to win this. I’m afraid to take anything else to help with this. Since everything has side effects and might even cause my main medication to not work right for me
It seems your doctor is about as clueless as mine are. They always tell me I that my issues don’t go by the information contained in the books BUT of course not. We are all different. There are types. I was told it is determined what we have by what they believe caused it. They first noticed my RA. Then did further testing and found the other problems that went along with the RA. I don’t believe there is really anything they can do for me. I just learn to control the issues the best I can. Which means watching what I eat. Since some food triggers the flares. Rest when I can. Then pace myself with my activities. On top of all this, I have a broken shoulder I’ve been trying to gain some comfort and stop the itching on my skin. But nothing works yet. I need to find a new doctor to give me some sort of cream if I can’t find something over the counter. But my income is not happening right now. and disability doesn’t give me much
SLE, YES THEIR ARE 2 TYPES OF LUPUS!! DISCOID, SKIN RASHES AND SYSTEMIC LUPUS. SOMETIMES, PEOPLE SAY I ONLY HAVE DISCOID LUPUS
BUT WHAT THEY DO NOT KNOW, IS SKIN LUPUS, EVENTUALLY WILL BECOME
SYSTEMIC (internal). I HAVE BEEN A GUEST SPEAKER FOR YEARS. EXPLAINING TO DOCTORS “HOW YOU SHOULD TREAT A PERSON WITH LUPUS AND THE
EFFECTS OF THE LUPUS”. NEVER SAY “YOU LOOK SO GOOD, HOW CAN YOU BE SO SICK”!!! THAT IS NOT WHAT THE PERSON WITH LUPUS WANTS TO HEAR!!! I HAVE 150 PEOPLE IN MY SUPPORT GROUP IN ONTARIO CALIFORNIA. WE MEET TWICE A YEAR!! WHY!! WELL, MANY OF THE PEOPLE THAT DO ATTEND THE MEETINGS ARE NOT LIVE A LONG AND FRUITFUL LIFE WITH SLE, LUPUS WHEN NOT IN REMISSION WILL AFFECT EVERY PERSON DIFFERENTLY. 90% OF THE PEOPLE WITH LUPUS, ARE TREATED WITH THE EFFECTS OF DAMAGE FROM LUPUS OR SYNTHOMS
(excuse my spelling). I AM IN A FLARE UP MYSELF AND THE LUPUS HAS EATEN UP MOST OF MY CARTLIDGE IN MY BODY. EVERYONE IS DIFFERENT.
IF THEY ARE DX EARLY ENOUGH, WITH LUPUS IT CAN BE CONTROLLED.
PLEASE NOTE, IF YOU ARE INTERESTED WITH MORE INFORMATION OF MY EXPERIENCE PLEASE EMAIL ME, WITH QUESTIONS.
XXXX@XXX
TRY TO EAT HEALTHY AND TAKE NAPS DAILY.
MAY GOD BE WITH US ALL.
MICKEY
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hello, I’m sorry to hear about your situation and I hope you’ll get better soon…
I have a question to ask if you don’t mind answering, can you explain about systemic lupus? in any way you understand it, thank you!
I’m not sure if this question was for me since I posted first. I can try to summarize what SLE is according to science or I can tell you that each and every case of lupus is different. The reason for this is that lupus affects many of if not all parts of the body in some damaging way. But these effects can be confused as diseases themselves without relating them to lupus. That’s why lupus is so hard to diagnose to begin with. Up to 5 or 6 years before they can finally give a correct diagnosis.
Lupus can affect brain, heart, kidneys, eyes, skin, mouth, hair, liver…any soft tissue part of the body.
I hope this is a good answer for you, but there is sooo much to say I could write a book.
Do you have any specific questions about lupus?