Just an update. Hubby and I met with my brain doc for over an hour this week. Did I mention that he is one of the top brain docs in the country? Perhaps I'm mentioning it again because it makes me...
Hi Lynnwood and BreRosie. I slept lots at home today between making calls for medical appointments and meds. I'm very tired. I've been on oxycodone since Aug 28 and it relieves the intense headache...
Thanks for the loving reply and prayers Melissa. More docs have looked at the films anHi d have d ecided it's a solid mass too deep to operate. I was discharged yesterday and will call today to...
Hi Everyone. I'm in hospital again. I went to ER with extreme headache and fatigue. They ran CT and then MRI. I have a blood clot deep in my brain. I'm resting and being monitored until the...
Yep Lynnwood it was an unremarkable presentation and when I saw my infectious disease doc (ID Doc) in ICU he tugged my foot and said, "What are you doing here? You never run fevers." Sleeping for 3...
Hi Everyone. I've been in the hospital 7 days and finally going home today. I went to the ER because I had been sleeping 3 days and finally took my temperature. It was 99.8 but I never have fevers so...
Welcome to our forum hardworkingbee. I've been waiting too see if someone more qualified than I would answer your post. I was working full time as a lab tech while putting myself thru school to...
Hi TAS-MS/lupy. I have had a problem with dry skin for years, but years ago I learned something that helps: Take baths or showers in warm water and before you dry off smooth all your most itchy area...
Hi SabalSabal. I agree this is a good idea. I've had Lupus so long that my response isn't very accurate, but here goes: Plaquenil 6 months which helped the last three months. Methotrexate was added...
Hi Everyone. I came home Tuesday afternoon. Hubby is home with me this week. A man from physical therapy has come twice. A machine was dropped off in which I place my leg 2 hours each day while it...
Hi Everyone. I had my total knee replacement yesterday. Everything went well except that I vomited during surgery. The team worked hard to aspirate trying to keep the vomit out of my lungs. I had a...
Hi Lynnwood and Terry. Thank you for the replies. Lynnwood it's so nice of you to mark my surgery on your calendar. Except for the intense pain I'm expecting great things. My knee hurts badly when I...
Hi Everyone. I have just finished having 5 medical appointments in 6 days and I'm worn out. My total knee replacement is Aug 28. I'll stay in the hospital overnight. Then I must stay in bed (except...
Hi Terry. Welcome back to our forum. It's very nice to hear from you, but I'm so sorry to hear of all your diagnoses. Just the diseases you mentioned are so much for anyone to go through. I took...
Hi Lynnwood. I've been wanting to answer this post since I saw it. I usually call this "the hot colds." I've had these temperature fluctuations about 5 years. I mentioned it to my rheumy PA last...
Hi Everyone. I've had terrible knee pain that has become increasingly worse over the past year. I have a knee brace that my orthopedic doc ordered for me, but it's so big and cumbersome that I don't...
Hi BreRosie and Luckylady56. In normal folks their white blood cells (WBC) drop when they contract a virus. This also happens with Lupies but many of us take meds that will also make our WBC count to...
Hi Lisabeans. I saw an immunologist while I was searching for a diagnosis. He was pleasant, took some blood to see if l was allergic to a few things and asked many questions about substances that...
Hi Disneyfan. Unfortunately I think that I scared you off, but if you are still lurking out there and decide to read the posts from Dustmite and me there is a great book that everyone with Lupus...
Disneyfan, your Prince Charming is a jerk. Just to bring you up to this century, today many men who have working wives help with the cooking and cleaning without being asked. If he divorces you no...
Hi Ladies. I have GERD diagnosed by my gastroenterologist, but once I had terrible heartburn that wouldn't resolve and my rheumy said I had thrush (candidiasis- yeast) growing in my esophagus. At...
Hi Cilly. Pericarditis is inflammation of the sac surrounding the heart. It can cause stabbing chest pain, but does not cause rashes. Even though I doubt that you have pericarditis you definitely...
Welcome to our forum Lgold789. Since you posted on such an old thread will you introduce yourself on a new post? I'm sure everyone would like to meet you. I'm not familiar with a nuclear dot pattern...
Welcome to our forum Leeflower. I tried Noni juice once at the insistence of my boss and the result was a horrible flare. I also had acupuncture for several months and it help the pain and nausea on...
Hi Furrow. When I have a medical appointment (and I have many) I take Provigil. If I take it daily I quickly develop a tolerance so like you I only take it when I must have an energy boost. I None of...
Welcome to our forum Molly74. I have lots of GI problems that put limitations on what I eat. I must limit gluten and must take Lactaid to eat yogurt. At least I have finally reduced yogurt to one...
Hi Kayvan61014. I've taken 1200mg nightly of gabapentin for years, but recently tried Lyrica for a second time because insurance stopped covering my Nucynta, my primary pain med. One very important...
Welcome to our forum Dsilva. There is a type of thrush that causes vertical lines, redness, and some pain. I get it often, but I am usually able to ignore it. Sometimes docs will prescribe an oral...
Hi Lynnwood. Same ol' meds. Cellcept,, prednisone, plaquenil, IVIG, multiple psych meds, metoprolol, pantoprazole, nucynta, lidocaine patches, voltaren gel, Align probiotic, and lots of OTC vitamins,...
Welcome to our forum luckytiger. Many Lupies have Sjogren's symptoms, and drymouth can cause halitosis. If you have dry mouth (like I do) make sure that your mouth rinse doesn't contain alcohol which...
Welcome to our forum bamablondie. I've had Lupus for years and sometimes the day before a flare I'll get a bright red butterfly rash, but other than that obvious sign I can't usually tell. For a few...
Hi dmcdo1221. My Hubby has frontal lobe epilepsy, but only has seizures at night. I awake fairly often to help him. He's been on epilepsy meds since he was 15 and he's 56 now. I hope your epilepsy is...
Cilly be careful with your balance. I've fallen many times, mostly in my house because I only use my cane or walker when I go outside. Just be sure to reach out and grab something if you feel...
Hi Everyone. Thank you so much for the replies. Nanabee your SLE seems to be closest to mine. It's comforting to know that someone else spends their flares resting just as I am inclined to do (pun...
Hi Lynnwood. Mine certainly hasn't been associated with Lupus. Over the years I have had many complaints and docs run tests but when they can't find a cause then they say, "It must be Lupus."...
Hi Everyone. When I stopped Benlysta I had a few weeks where I felt fairly well. Now Lupus has come back with all it's symptoms and flares. Currently I am spending about 20 hours each day in bed and...
Hi Lynnwood. I've often had vertigo since Lupus. It's a part of the reason I've fallen so many times (including the time I broke five ribs). Interestingly since I stopped Benlysta and my Lupus...
Welcome to our forum Motowngurl. I'm having a major flare now too. No ulcers in my nose now but in the past my rheumy said to put antibiotic ointment in my nose. It's also what I use for dry nose. I...
Hi Melissa. I'm so sorry that you're having such a terrible time. Unfortunately what I have to tell you isn't good. The liver produces bile and if it stops producing bile or the bile is blocked from...
Hi Lynnwood. You put in lots of time and effort into HW and it's no wonder that after all these years you've become weary. I'm so sorry that I often disappear for a very long periods of time. Unlike...
Hi Ladies. I had no hair on my body for a couple of years. Also during that time I had small clumps of head hair fall out. The hair eventually grew back everywhere but not as thick. If you lose large...
Welcome to our forum Kate24. I am so sorry to hear that you are so ill. I can't think of anyone who has taken all of your infusion meds. I took Benlysta for two years and just stopped two months ago...
Hi Lisabeans. Since Lupus my temperature always runs low but I also get what I call the "the hot/ colds" where I'm freezing for an hour then get hot. Yet my internal body temp is low. Body...
Hi Dustmite. I noticed no one answered your post and everyone deserves an answer even if it's from li'l ol' me. I saw you posted later so have you been to a doc regarding your first flare? I my...
Hi Dustmite. I've posted this before, but I want to share it again. My rheumatologist has an acronym for things that cause flares: SHITW (pronounced shit-wa) S- Stress H- Hormones I- Infection T-...
Hi 10bmd10. I have a BS in medical technology (laboratory). I haven't worked in years, but it used to be that a lab couldn't post results until the physician reviewed them. The doc needs to make...
Hi So Tired Of Feeling Like. I had a sinus infection for over a year too. Then someone recommend an exceptional ENT. He did surgery and cleaned both sinuses plus repaired my deviated septum. I felt...
Lynnwood and Melissa thank you so much for the potty humor! I laughed so much and I needed a good laugh. My bouts this morning exhausted me so I spent the day sleeping. Now I'm awake like the owls I...
The Lupus site www.butyoudontlooksick.com used to have funny quips about Lupus. A favorite: You know you have lupus when you bend over to tie your shoes and think, "What else can I do while I'm down...
Guess where I'm sitting? Not the latest thrill ride at the amusement park (that wouldn't be amusing at all). Not watching the latest suspense/horror thriller at the multiplex. Hint: my "dirty"...