My hematologist IS an oncologist. That's who ordered the tests. He is a very good doctor but can only diagnose with tests. I don't thnk he really believed it was Lupus..and maybe I do have Lupus as...
The tests came back the same. I saw my PCP today and he said it could be very preliminary stage of lymphoma or myeloma...neither of which made me happy. In addition, with all the stress I have...
I didn't ask him why he ordered it...but I am thinking he is not sure that is truly is Lupus. They have my labs...the nurse is supposed to call me..and now the waiting game..I wait...and wait....and...
Doctors said it was Lupus after 7 positive ANA tests and lots of low abnormal labs. Hematologist ordered an M-Spike blood test...it came back high. He said it could indicate early bone cancer or...
Mammo report was stable...whatever is there was there so no change. As for the eye....the eye doctor claims gravity will make the floater "drop." Physics says otherwise....weightless??? Gravity doe...
I have PVD as well with an ugly dangling thing with a hook at the end in my right eye. It's been there for weeks now. Saw 3 doctors. The third said "gravity will lower it in 6 to 8 weeks." I don't...
Hi All! I've been away for a while...3 weeks in Europe and kind of down since my return. Just before we left for our trip, on my birthday, to be exact, I spent the afternoon in the ER after I saw...
I'm not on Plaquinel. I am on nothing. I saw the retina specialist today and his description of my eye problem is that the vitreous gel "popped." I now have an addition to my SLE...permanent "spider...
I'm seeing the opthalmologist tomorrow morning. My eye is red and swollen, seeing the floater spider, and hurts at times. I looked at photos of eye diseases and came across uveitis. It CAN be another...
At least he can still SEE..which rhymes with.........:-}...
They were on the bed...but you still have to bend. I'm better off when he's not in my way. It was the cosmetics and toiletries today and he couldn't help. My doctor recommended Genteel eye drops (or...
Hi All, I looked up what's been happening to me for the past few days.....started with "bolts of lightening flashes," and then, "spider floaters." I DID read, on one site, that autoimmune disease CAN...
This was different...I have dry eyes too and use Genteel regularly. The light flashes were something I never experienced and this is not like little floaters..this is a huge spider that I am seeing!...
Thanks guys! Another problem today...wound up in the ER this afternoon (great way to spend a birthday!). Yesterday I saw some "light flashes" in my right eye. I thought nothing of it but it was...
Thank you, SueToo! Good idea! I am seeing my hematologist on Tuesday and hopefully will get clearance to go. I am also hoping for at least a 3 on my WBC. Haven't even been close the last few labs....
Hi Lynnwood,I take Aleve off and on. I did try Mobic and it did nothing for me. I try not to take too many as I find they are constipating and then I have more problems. We keep our house at 78, so I...
I've read about Raynaud's but not sure what it is. Today, I had a numb feeling in my left hand and my fingertips on that hand looked strangely white compared to the rest of my hand and arm. Does that...
packed today for a long trip....kicked off a major flare....overwhelming fatigue, Raynauds, light flashes, bone pain. For me, sun exposure flares are minor compared to overdoing it with physical...
So...basically the symptoms, other than the butterly rash, are one of the same?...
Does sun and heat affect systemic Lupus the same way it does discoid? I had a long discusion with my gyn today about my condition. She said that Lupus appearing after age 65 is normally not as severe...
Earnest, I don't get the rash....my Lupus is systemic. However, if I am out in the sun for more than 45 minutes, I feel a "crash" coming on. Is this a "flare?" I always use SPF 30. I'm still learning...
Dear Denita, I agree with you! Are you surprised? I noticed that she was looking thinner and more tired when she last played tournament, and with all the pressure of being one of the world's...
I'm no Venus Williams...but I do play tennis, and I have SLE with overlapping Sjogren's. I find that PLAYING tennis HELPS with the fatigue and joint pain. The days I don't play tennis I have more...
Dear Slee51, I feel that there are germs everywhere and simply because we have an AI disease, we can't spend our lives in a bubble!! Several years ago, when I was "healthy," I went to Costco, and...
Dear Fran, Thanks for the advice! Can I assume you are a grannie as well? I would love some "me time," but I have one week to see two doctors and pack for a long trip to a cold place. Not much time...
Hi All, Kids and grandkids left yesterday...7 -1/2 months old and 2-1/2 years old. First time since my diagnosis of SLE. I am totally wiped out. How long does it normally take until I can be back to...
Glad you told me! Many people argue with me when I tell them that certan foods need not be eaten when on Synthroid, and they tell me I m nuts, and then they complain that they can't lose weight!...
Joy: Sweet potatoes? Never heard that one. I eat them a lot..including sweet potato fries. I thought just the walnuts and cruciferous veggies.....hmmm...
Hey Donna! Keep the faith! I'm a newbie here...I've been following your posts...and wish you good health from now on!!!!!...
Joy: My doctor told me one hour before drinking or eating anything after taking my Synthroid and absolutely no meds for four hours. There are also foods that can interfere with Synthroid which...
Bill: I'll check with my hematologist and let you know what his thoughts are. He said some of the side effects could be tough....
The pain is back in the hip again. I use Arnica gel. Going to try and play tennis this morning, as two days of inactivity did me more harm than good. I have Mobic - 7.5 mg. Will take that when I get...
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You'll have to get in line...my hematologist already has DIBBS on my spot...but you are probably MUCH prettier than he is..so I will let my husband choose! :-)...
Thanks guys. I am not too worried about the germs as much as I am about my strength and endurance! I have not been away from home since my diagnosis. As for germs, my two grand babies..7 months and...
Joy, I'm not sun sensitive in that I dont and never did have the butterfly rash. My form of Lupus doesn't "show." It's all systemic, with a "touch" of Sjrogens..the dry eye problem. I was diagnosed...
/community/emoticons/nono.gif I have SLE -- recently diagnosed. We have a three week vacation planned, visiting cold places like Iceland and Greenland. We've canceled two vacations this year because...
LupusMomma: Are you on Prednisone????...
Hi all, Has anyone tried Benlysta, the newly approved drug for Lupus treatment?? I have SLE and I have an appointment with my hematologist on September 6th. I was going to ask him about it. If you...
Mine says that too...but he's the one I am cleaning up AFTER!...
Dear Sylvia (My Blessed Late Mom's Name), I feel your pain. After reading the posts from some of the people in this Forum, and from my own personal experience with recently diagnosed Lupus, people...
Troyka, Lupus had a profound psychological effect on me. People tell me I am not the same person. What your friend's wife is trying to do is escape from herself. We've been there and some of us ARE...
Hi Guys! Petter, the Administrator, got me back in! My eyes were tired and blurry last night and I accidentally hit the unsubscribe link. Lynnwood, I agree with your advice to Momto3. Does sound like...
Dear Lynwood, Sorry I missed your Post last night. You are probably a lot younger than I am, and I can totally understand what effect Lupus has had on your life. I love tennis and I am good at...
I had it off and on all day yesterday and going to bed was an eperience. I had to wait for the room to stop moving to try and fall asleep! Did anyone try Benlysta yet?? I spoke to my hematologist...
Ellie, You are quite a lady! I wish I had half your strength and faith. Last night a new symptom...vertigo. Did that ever happen to you too? I will seriously think about taking the Plaquinel and...
Dear Ellie, I am older than most people in this group....my rheumatologist told me it was "rare" to be diagnosed with Lupus at my age. My eyes have been bothering me a lot without Plaquinel...they...
Joy: Do you mind if I ask your age? I did read that Plaqinel kills your appetite and can cause anorexia. I weigh about 116 now and want to keep the weight. I'm about five foot four. I am fearful of...
Thanks again for your response. Yes I did read Spoon Theory and probably anything and everything about Lupus. Unfortunately, I try very hard to explain to people how I am feeling, but I can look at...
Yes it WAS a shocker! I remember hearing my Mom talk about my Dad having Lupus, but I never pad muh attention to it as I didn;t even know that Lupus was. For three months, I was a human pin cushion,...