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Medical Forum / Diseases and Disorders / Lupus / February 2005Worried about my Sister....
Actually, it's my sister in law...but I'm really worried about her and I was wondering if someone on here might be able to give me a bit of advice. Dana was diagnosed with Lupus, Rhematoid Arthritis, and another tissue disease in 1997. She's now 25 years old. She had a beautiful baby boy in the summer of 2003 and has been doing pretty good for a while. Last winter she got sick...a flare up and her saliva glands stopped working, etc...all due to dehydration. Now, she's in the hospital again, but they're having problems finding out what is wrong. She's in a lot of pain. It started with a bit of a headache and some back pain and progressed to a very bad headache and pain all over her body. So much pain in fact that a megadose of morphine isn't even taking the edge off. They thought that maybe she might have an infection in some part of her brain. But, the brain scans that they did today didn't show anything abnormal. Also, her xrays on her chest and back turned up normal (she's also having trouble breathing when she's lying down). They've decided to wait until tomorrow to see if she's still feeling the same. If she is, they're going to do a deeper brain scan. I'm really worried. We've been through a lot of highs and lows together. She's been with my twin brother for 10 years and this summer they were married. That decision was made because of last winter's flare up. She was scared if they didn't get married soon, that she would never be well again to be married. I'm just wondering if there is anyone out there who has ha a flare up that resembled anything like this. The lupus specialist is nowhere near us and I don't expect to see him pack up and hoof it over to this side of the province just to see Dana. That would be too good and too easy. It scares me to see her in so much pain. I would just love to hear that someone out there has had a similar experience and that it's going to be okay this time....Please write me back.... Karla > Actually, it's my sister in law...but I'm really worried about her and I was > wondering if someone on here might be able to give me a bit of advice. [quoted text clipped - 27 lines] > back.... > Karla Hello Karla and welcome. I'm sorry to hear about your sister-in-law. Sounds like she's also got Sjögren's syndrome If you click on this http://www.arthritis.ca/custom%20home/default.asp?s=1 and then types, you can read about it. "Sjögren's syndrome is a chronic disorder that causes damage to the salivary glands, resulting in dry mouth, and the tear glands, resulting in dry eyes. It can also affect other parts of the body including joints, muscles and nerves, organs such as the lungs, kidneys, liver, pancreas, stomach and brain, or glands such as the thyroid gland. Sjögren's syndrome can cause complete destruction of any of these areas. Since Sjögren's syndrome can affect the liver and pancreas, there is a greater chance of developing cancer of the lymph tissue. However, this is an unusual and rare result." Sounds like she's got a mother of pain going on there, if morphine doesn't help. I don't know why they seem to be focusing on the brain; so many other things come to mind - (I read other newsgroups) And why they'd only be checking her brain for infection is weird. Infections anywhere can result in severe pain; I know because I had a systemic infection that started "urinary", but wasn't caught in time. There's many other (possibles) that come to mind; we could conjecture till the cows come home. Does she have a rash that starts near her spine and twists around to her abdomen? Shingles comes to mind; the pain precedes the rash; others come to mind like lymphoma. Perhaps they'll find the problem or if they muck around too long she may want to go to Toronto. Not everything is Lupus related, but perhaps an expert in Toronto could sort out what's been ruled out and have more experience with severe situations such as you describe. Let's see what others offer from their experiences. Keep in touch, J (Canada too) - and not a doctor. Hi Karla, Could you explain the type of pain she is having through her body? I mean, is it burning, aching, etc? I can relate to some of the symptoms you mentioned, but more details would be helpful to me. I would like to welcome you. I hope we can be of some help. BJ-Sk. Canada > Actually, it's my sister in law...but I'm really worried about her and I was > wondering if someone on here might be able to give me a bit of advice. [quoted text clipped - 27 lines] > back.... > Karla Karla - I am sorry to say I have no experience with this type of pain - personally or with anyone I know. I just wanted to welcome you to the group. Please keep us updated. Stephanie > Actually, it's my sister in law...but I'm really worried about her and I > was [quoted text clipped - 32 lines] > back.... > Karla Well....to say the least, it's been a wild couple of days. They diagnosed her with Meningitis, then everyone who had close contact with her since Tuesday morning had to be treated with antibiotics too. Now, yesterday, they decided that maybe it's not meningitis and they're thinking maybe something else, yet they haven't said what the something else is. But, what really blows my mind is that they haven't consulted her lupus specialist!!! I don't even know if they've notified him that she is sick now. They have just assumed that it's some bacterial/viral condition that they can find and treat. I'm so frustrated that I could cry most of the time. : ( But, we're all taking it one day at a time as I'm sure we've done before and we'll have to do again at some point. But, I wanted to say thank you for ALL of your kind words. I'll keep you updated. Karla > Well....to say the least, it's been a wild couple of days. They diagnosed > her with Meningitis, then everyone who had close contact with her since [quoted text clipped - 8 lines] > we'll have to do again at some point. But, I wanted to say thank you for > ALL of your kind words. I'll keep you updated. Dad had bacterial meningitis during the war. They gave him a sufa antibiotic and he had a bad reaction. They had to divert a supply plane (this was in Europe) to get him a different kind of antibiotic. ( ( ( Karla ) ) ) I'm kind of lost for words. J I had meningitis/encephalitis prior to being diagnosed with MCTD (an overlap of Lupus, Scleroderma and Polymyositis along with RA in my case). I oft think that perhaps lesions in the brain can cause a mixed signals of the CNS. Have they done a spinal tap? They really need to do one of them. Sounds like no one really knows what they are doing there - doctorwise. Not unusual, considering that happens more often then not with autoimmune disease. Always, ..? ???)) -:?:- ?.?? .????)) ((??.?? ..?? cloud -:?:- -:?:- ((??.??* >> Well....to say the least, it's been a wild couple of days. They >> diagnosed [quoted text clipped - 23 lines] > ( ( ( Karla ) ) ) I'm kind of lost for words. > J Have they tried medicating her using muscle relaxant and an anti-inflamatory IM? That is the only way i found relief. It was as if my whole body was in one big muscle spasm, if one can even imaging how much fun that can be. Always, ..? ???)) -:?:- ?.?? .????)) ((??.?? ..?? cloud -:?:- -:?:- ((??.??* > Actually, it's my sister in law...but I'm really worried about her and I > was [quoted text clipped - 6 lines] > due to dehydration. Now, she's in the hospital again, but they're having > problems finding out what is wrong. <snipped for brevity> Actually, sounds just like me! Could also be Fibromyalgia along with her other issues. THe full body pain IS VERY familiar. I have Mixed Connective Tissue Disease. It is generally know as an overlap of Lupus, Scleroderma and Polymyositis. Sometimes RA. I have RA, MCTD(mostly Lupus), Fibromyalgia, and too many other dang things to count. The pain could also be referred pain. Has anyone checked her spine? Always, ..? ???)) -:?:- ?.?? .????)) ((??.?? ..?? cloud -:?:- -:?:- ((??.??* > Actually, it's my sister in law...but I'm really worried about her and I > was [quoted text clipped - 32 lines] > back.... > Karla |
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