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lemongrass
Board Addict
Reged: 09/23/03
Posts: 361
Loc: IL
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Hi, folks. Hope it's a wonderful, pain-free day for you all.
Listen, my GP suspects I have Lupus. I have several of the symptoms and we will get to the blood work as soon as he becomes effective on my insurance. Long story there.
Anyway, I don't want to be lead to websites to find out about this auto-immune disease, I would much rather know about "your" personal experiences or that of someone you know who has had lupus.
I know that symptoms can differ from case to case, so I was interested in hearing how it's affected others and their quality of living. Can this be managed, supressed...?
Thanks so much for all of your help. It's greatly appreciated.
lemongrass
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mpcagh
Member
Reged: 12/27/03
Posts: 130
Loc: California
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An old boss of mine had Lupus and she always had very swollen joints (especially in her hands).
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"There's a fine line between love and hate, and a mile full of lessons in between." William M. Siegel, Jr.
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henry1
Enthusiast
Reged: 10/08/03
Posts: 282
Loc: North Central USA
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I have a relative with Lupus. She has joint problems, and has had several hospital stays because of lung infections. She is in her early 40s, and was diagnosed around the age of 30. She has had very good success keeping it under control. You would never know she has it, but she also has a good Doctor who keeps a close check on her.
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treading the backward path...
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Firefairy
Member
Reged: 11/26/03
Posts: 147
Loc: Mississippi
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I want to help, but I don't even know where to start. Lupus (SLE) can take so many different forms, and you could end up having completely different problems/symptoms/solutions from me.
I was diagnosed at age 27, around 10 years ago. I started showing signs as early as age 15 but was misdiagnosed a multitude of times. I am on a very aggressive treatment plan, between that and OP's I have a much better quality of life than some people with SLE.
I read a lot, and have an extensive library of books on the subject. Some of the data is inaccurate or out-of-date, I buy everything on the subject from medical texts to new age solutions. I also belong to a medical study where they are using my blood to do research on SLE and AIDS, they frequently send me updated research. I have found books on living with fibro, arthritis, and Chronic Fatigue very helpful in day to day living.
My lungs and intestines have been the two most targeted organs. I have had a complete hysterectomy and several other surgeries.
Ask me specific questions and I will be glad to answer. There is no question to personal on the subject that you cannot ask me on this forum, someone else may also want to know or have input as well.
It is in most cases possible to control this disease, and most people even have periods where the disease is not active (remission).
I hope you end up not having it, but sometimes it is a relief to be able to put a name to what is wrong.
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lemongrass
Board Addict
Reged: 09/23/03
Posts: 361
Loc: IL
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Awww, my firefairy to the rescue again! LOL
Well, here's the thing, I understand that different auto-immune diseases can overlap and this is the message I'm getting from my doctor. He says that I display several signs of SLE.
Examples, sores in the mouth and/or nose, photosensitivity (me and the sun DO NOT get along at all and it appears I am sort of allergic to sunlight). I have the chronic fatigue, the achy muscles and very severe joint pain all over, sometimes I have low grade temps, I get rashes on my arms, neck and chest, some of the rashes are raised little bumps that are whitish looking (kinda like an ingrown hair or something, but it's not), and I rarely notice them until I feel them. They aren't itchy or painful. I do get redish blotches on my face (sometimes), but it looks nothing like this butterfly rash that I looked up. I don't know if I have any pulmonary problems, but I am a smoker and am trying to quit. I notice I weeze a lot in the mornings or when I'm really ill, and I think this is due to the smoking. Everytime my doctors listen to my lungs, they sound fine. I have had bronchitis and pneumonia before though. Don't know if this is relative or not. I also have intestinal and gastro problems, supposedly IBS. I will, for no apparent reason, vomit at least once a week and it's usually just bile.
Now I'm wondering of all of my anaphylactic episodes were Lupus related -your own body fighting it's body sort of theory. I just don't know.
But I do have the Hep C and heard that it's not uncommon to have SLE when you have Hep C, or to develop it. I just have to go through a battery of tests to find out what's what.
So, how did they actually discover that you have SLE? What sorts of test did they do? Since I've had the Hep C for so long and wasn't diagnosed until 2001, I have been playing the chicken and the egg guessing game. Which came first, the Hep C or the SLE? That is, if I actually have SLE.
Have you got any good websites I can visit that are up-to-date with their information? I would really like to explore this are much more. I like to be prepared when I see my doctors, be an active partner in my medical assessments, diagnosis, treatment, etc. I also want them to know that they're not dealing with a dummy, nor do I want anything to go undetected.
Actually, my mom had H-Pylori and she seems to think I should be tested for that and if I'm treated with the appropriate antibiotics a lot of those other symptoms will clear.
Thanks for all of your help and input, firefairy. You're so helpful. A huge thank you!
lemongrass
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Karma2678
Enthusiast
Reged: 07/23/03
Posts: 200
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Hi Lemongrass!
I have a Personal Care Home and I have a patient with Lupus. She is experiencing the same problems that you and firefairy have described. I am no expert on the disease, but can describe the problems she is suffering from. She has fibro and arthritis. She has the blotches and skin rashes, sensitivity to light, very nauseated at times, she get's extremely tired, She also has major joint problems, One of her legs has became shorter than the other. She was in very bad condition at one time years ago. ( I believe she has a very severe case along with many other health problems) but she has had Lupus for 25 years. She reads everything she can about lupus and takes VERY good care of herself. She stays in high sprits and has good days and bad days.
I wish you the best of luck and I hope that you will get some good news. But, if you you do find out you do have lupus I would like you to know you can still live your life to the fullest!
I will keep you in my thoughts and prayers!
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~~~ Karma ~~~
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lemongrass
Board Addict
Reged: 09/23/03
Posts: 361
Loc: IL
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Thank you, karma! You just lifted my spirits with this lady's story...and it's your story as well, since you care for her. Wow! I really admire those in the Home Health Care business. It's definitely a challenging position and I'm sure a rewarding one when you have patients' like the one you just described.
And it's also a relief to know that I can live a long life if I am diagnosed with Lupus, but the fact of the matter is I do have Hep C and don't know what effect that will have on my body in the near future either, or my mortality, for that matter. I understand there is now some sort of supressive therapy for Hep C now. A close friend of mine is going on it. It's supposed to help stop/slow the progression of the disease. I'm not so sure my doc would even be willing to put me on that as I had such a difficult time with the treatments I underwent in 2002.
At any rate, thank you so much for your inspirational feedback. It has given me some comfort and relief. I will keep you updated on the status, which I really won't know anything until sometime in March. Meanwhile, keeping my fingers crossed!
Thanks again!
lemongrass
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FangZ
Member
Reged: 12/16/02
Posts: 104
Loc: My own theoretically ideal wor...
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Lemongrass...Definately get tested for Hpylori. That can make you so sick for so long and it's often undiagnosed.
I had to beg to be tested, (Long, Long, Long...story..ended w/ gallbladder removal and now have horrible IBS)
The 'breath' test is suppossed to be the best for hpylori.
I have lots of the same symptoms you describe. I have been tested at least 5 times for Lupus, I have many classic signs. I have RA, and was at one time diagnosed w/ fibro.
Find a good dr that you trust and keep us updated.
You sound like a very informed person...good luck!!
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Don't sweat the petty things and don't pet the sweaty things!
Before they invented drawing boards, what did they go back to?
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lemongrass
Board Addict
Reged: 09/23/03
Posts: 361
Loc: IL
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FangZ, gotta love that screen name! LOL
Yes, my mother is telling me to insist upon getting tested by my gastro. There's a simple breathe test that can be done to identify it. I mentioned it to my gastro over a year ago and he sort of shrugged it off. Well, he's not getting off that easy this time. Even my youngest sister was just treated for H-P! She's only 11.
I had the gall bladder problems, too, and had mine removed. Supposedly it was caked with crystalized cholesterol. But I was diagnosed with a bleeding ulcer back in 1991. Back then, they didn't know H-Pylori was a bacteria that caused ulcers.
Another thing I learned from my mother is that most people who acquire H-P have gotten it from having endoscopic procedures. The gastro doctors can transmit it to their patients since they do the procedures and that tubing can have splash-back upon removal. Minute amounts of fluids can enter the doctors' eyes and what have you. Plus I don't know if they use the same tubing on patients with simple sterilization or if they use new ones on each individual. OMG! I must have had at least a dozen of those procedures!
Thanks for the input. It sure is great to be here with so much encouragement from others. And best of luck to you! I hope you're doing well.
lemongrass
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Firefairy
Member
Reged: 11/26/03
Posts: 147
Loc: Mississippi
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There is so much I want to say on the subject of SLE. I have been PM'd multiple requests for specific info plus I want to address some of the stuff asked/remarked upon here. I will break it down into different posts, titled, you can read the ones you want and skip the ones you don't without having to read the whole thing. Some today, maybe others later. Anyone objects, just PM me.
TESTING:
First they determine if you have 4 or 5 of the "Eleven Criteria" (* will be our symbol for SLE Patients)
1. Malar or Butterfly rash: on cheeks & nose, can vary from looking like poisen ivy, heat rash, blushing heavily, or like a sunburn. Around half of all * will have at some point.
2. Discoid rash: discrete, round, scaly spots on face, arms, upper back, scalp, or ears. Affects 25% of all *.
3. Photosensitivity: Most * are
4. Oral Ulcers: may resemble cold sores, usually found on hard palate of mouth, and usually painless. 40% of *
5. Arthritis: a type that usually does not damage bones but can cause swelling and inflammation. Almost all of *
6. Serositis: Pleuritis, Pericarditis, or peritonitis. At least half of all * experience one of these at some point.
7. Renal disorder: Almost all * have at some point to some degree. That is why controlling blood pressure is vital in all *.
8. Neurologic abnormalities: can take many forms, from acute seizures and pyschosis to chronic forms of confusion and memory loss.
9. Blood disorders: there are four major ones in lupus
10. Immunologic abnormalities:
a) Anti-DNA antibodies
b) LE prep: found in 90%of *, but also found in in patients with other autoimmune disorders.
c) anti-Sm antibodies
d) false positive test for syphilis
11. ANA: 95% of all * test positive, but 20% of people who test positive may have a related disorder.
Other symptoms/Signs/medical history evaluated during diagnosis:
Prolonged or extreme fatigue, muscle pain, achy joints, migraines or other severe headaches, skin rashes, hair loss, low-grade fevers, chest pain, cold hands and feet, depression, edema or swelling, easy bruising, dry eyes or mouth, premenstrual flares, miscarriages, IBS
Because a lot of the symptoms of SLE are come and go it is very hard to diagnose. If you have a rash that comes and goes, take a picture of it in case it is gone before you see a doctor. Write down ALL symptoms you can think of, all the doctors you have seen in your search for a diagnosis, all tests you have had done in the past. If you are using OP's you might have copies of them, take them with you. List of ALL med's you take, some can actually cause a form of Lupus.
Wow, I guess that is enough for now.
Love and kisses and good night.
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Firefairy
Member
Reged: 11/26/03
Posts: 147
Loc: Mississippi
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I will post later on what my specifics and how I handle them but the most important things I can say are these:
1. Find a GOOD doctor
2. Find a support group
3. Most people with Lupus and/or Fibro have a "window", a period of several hours during the day that they feel the best. Utilize that time to do what is most important to you, or what you most need to get done.
4. Do not feel guilty about what you cannot do. If you have little ones, you might not be able to play kickball on some days, on those days watch "Finding Nemo" while cuddling, or have them read stories to you.
Love to all,
Firefairy
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Firefairy
Member
Reged: 11/26/03
Posts: 147
Loc: Mississippi
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Lemongrass,
have you had your appointment yet?
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lemongrass
Board Addict
Reged: 09/23/03
Posts: 361
Loc: IL
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Hey there!
I have to get my referrals on March 1st, but the appointments are set in place. I see my gastro on the 3rd and the rheumatologist on the 8th. Boy, talk about nervous.
I think my GP's plan is to get testing back from those two specialists, first, and then see about further testing for Lupus. I'll have to be sure to ask when I see him on the 1st. And my mother still keeps insisting on me getting tested for H-Pylori, which I will address when I see my gastro.
How've you been doing? You hanging in there? Let me know.
Thanks so much for thinking about me. What a difference it makes in one's life to know they are thought of. This was a hectic day and now I'm beginning to feel a little more mellow.
Thank you!
lemongrass
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