Odd Diagnosis - Enlarged Aorta???
finnie
16 years ago
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clubm
16 years agolast modified: 9 years agofinnie
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Comments (43)Hey Kathy - here is something that may take your ? away from autoimmune: is the failure of an organism to recognize its own constituent parts as self, which results in an immune response against its own cells and tissues. Any disease that results from such an aberrant immune response is termed an autoimmune disease. Prominent examples include Coeliac disease, diabetes mellitus type 1 (IDDM), systemic lupus erythematosus (SLE), Sjögren's syndrome, Churg-Strauss Syndrome, Hashimoto's thyroiditis, Graves' disease, idiopathic thrombocytopenic purpura, and rheumatoid arthritis (RA). See List of autoimmune diseases. I know that that's a lot multi-syllabic words, but basically, it is the body attacking itself, due to the inborn lack of ability to recognize it's own DNA. It is sorta like you kill your son when he comes in your home, cause you don't recognize him. Very sad, very scary. Hope you know I don't think you'd do that, but it is the best way I can explain how Be-Be's own body is attacking itself. ((((Hugs and purrs)))))) Nancy, Midnight, Nicademus, Sylvester and Ozzie!!!...See MoreMedical costs
Comments (105)Hi At this time i am cancer free ,at least according to my last tests lol Ofcourse will have to keep up tests for the rest of my life but hopefully MUCH longer between them?? Have some "suspicious " areas but not receiving any treatments at this time . i had a series of treatments called "Cyberknife" which have proven to be very effective . This was done locally and I feel I got excellent treatment. Results seem to indicate that . This involves very high radiation rather than surgery which means I can't have more of this type and will not have chemo though so far there has been no need . Both of my brothers and both parents died of cancer so i seem to be very lucky?? lol Thanks for the good wishes !!! gary...See MoreSaints, Dry Eyes and other stuff.
Comments (23)Hi Karen, this is going to be a bit long but please bear with me 'cause early Sjogren's is sneaky & I'd like to give you a reasonably comprehensive overlook. I'll start with Dry Eyes & Dry Mouth 'cause they are hallmarks of Sjogren's. Dry Mouth - Even as a teenager, I remember always having a drink with me although I don't exactly remember why. Never went to the store, never went on a date, etc. without that drink. It was a part of me. It wasn't as if I felt urgent need to hydrate myself. Just always this desire for frequent small sips. That continued for the next 30 years but didn't get any worse. About 6 years ago, it became uncomfortable enough I started mentioning it first to DH. "Gosh, my mouth feels like cotton balls!" Soon, it was bothering me enough I mentioned it to my primary care doctor. I was taking Flexeril at the time for a spinal injury & my PC doctor just shrugged the dry mouth off as a side affect. Now, it's so dry it bleeds. Mouth sores - yes. Dry lips - yes. Blisters - yes. The dry mouth has progressed to now being nearly impossible to deal with but that has taken decades to reach this point. Dry Eyes - My eyes have sorta "itched" for several decades. I never thought much about it. I've had eye infections over the years also but they were far enough apart I didn't think to mention it to a doctor when a new one turned up. Dry eyes have not been my primary focus with Sjogren's but they are now dry enough my opthomologist pretty much insisted I have the Eye Plugs inserted. They've helped, a lot. I still need drops. Eye lid infections - yes. Sores in the corners of my eyes - yes. Swallowing, Talking, Choking - My Sjogren's has progressed to where I can hardly talk anymore. I also have trouble chewing & swallowing. Many foods are impossible for me to eat. My diet has changed dramatically in the past 3 years. I also choke - especially on pills but also just trying to eat a meal. At night, my throat swells & sticks together blocking off my air. I wake up in a panic reaching for water. Dry Skin - Again, for as long as I can remember I've had dry skin. I'd go through gallons of lotion. Now, I use prescription stuff that really helps. Fatigue - Gosh, just thought I was "weird" & a bit unlike my friends. I never had a curfew as a kid. Mom knew I couldn't stay up late enough to need a curfew. She was right. Sometimes, I would fall asleep practicing with my chin on my accordion. Again though - nothing that seemed like a trip to the doctor was necessary. I will say though that the fatigue was complete. Sometimes, it felt like lifting my arms to brush my hair was impossible. Muscle/Joint Pain - Today "this" hurts, yesterday "that" hurt. Everyday, somewhere else hurt. The pain would last for a day or weeks & then disappear just as mysteriously as it had arrived. I thought it must be "normal" & I was just a wimp. I was diagnosed with fibromyalgia at some point & from then forward whenever something hurt doctors would just shake their head & use that diagnosis as explanation for my pain. Many times the pain was unbearable. I once overdosed on aspirin trying to get relief. That episode resulted in more blood work. Negative for everything. The pain though continued. In my mid-40s, I had an extensive & unusual spinal surgery to correct a rare injury. The surgery almost did me in. After that surgery, doctors blamed the surgery every time I burped. I should note that I've had 13 major surgeries for "unusual" stuff. Fevers - I have a history of spontaneously running a fever. Fine one minute. Poof, next minute...I've got a fever of 101+ degrees. An hour later, I'm fine. Nightsweats - I've had then for decades. Always associated them with some cancers (I'm also a multiple cancer survivor) so I was afraid to mention them to my doctors. But, my fear didn't make them go away. Still have them. Still haven't told my doctors. Heart Palpitations - Ended up in ER. Diagnosed with "Anxiety Attacks". Nope. Sjogren's. Sensitive to Temperature Changes - I'm either cold or hot. There's only about a 5-8 degree range I'm really comfortable. It's not just chilly or a bit warm either. I'm either shaking from cold or in ER from heat stroke. So, we keep our house even temperature year around. Sometimes, cost isn't everything. Dental - Gosh, where to begin? Let's just say I fought a good fight but just a couple years ago I said, "ENOUGH! I can't tolerate this anymore. Pull them out, every single one - NOW! I'm not leaving this office until they are gone." Even implants would not stay in my jaws. I've pulled two that were erupting from my jaw by hand in the middle of the night to stop the pain. Now, I've got dentures (should have done that years ago!) but my mouth is so dry my tongue sticks like glue to the dentures & bleeds when I try to move it. Ugh. Neuro Pain - This is now a serious problem. I have no feeling at all in my legs/feet. Seriously, I can't feel the floor or anything else. Sharp pins/needles type pain virtually constantly. Stress - I had a garden accident July '09 & re-injured my spine around the surgical area (right between the shoulder blades). My back surgery had been so "unusual" a hotdog surgeon was brought in from Arizona. He published a "White Paper" on me that lives for eternity in medical journals along with the video they took of the the entire surgery. Anyway, the re-injury hurt so bad I had a stroke. Yep, I met the definition of "stressed" there for awhile. As I started to settle down from this little incident I noticed that my mouth was drier, my eyes were drier, my muscles/joint pain was worse, the fevers were more frequent, etc., etc., etc. I could go on with other symptoms but I think that's enough for you to get an idea of Sjogren's. Eventually, I found a doctor that treated me as a whole patient & didn't just look at the reason I'd written down for that particular appointment. It led to my diagnosis for both Lupus & Sjogren's. A word about the bloodwork is in order here, I think. I'd had these tests multiple times before - always negative. Many doctors said, "Tricia, I "think" you've got Lupus but your tests don't bear confirmation of that diagnosis." One even prescribed Placquenil & my fevers virtually disappeared. Unfortunately, that doctor left the practice & his replacement didn't believe my tests justified the risks of Placquenil. The fevers returned within a few short months. Anyway, my current primary care doctor redid the bloodwork yet again. This time, I was positive for both Lupus & Sjogren's. It tooks decades for those tests to turn positive. My last SS-A test results were 2.78. Positive. My SS-B test results were 3.25. Positive. Also, Sjogren's patients often show Vitamin D deficiency. I'm almost always testing deficient & take 50,000 mgs once/week for 4-8 weeks then off for a bit until we test again then back on for another 4-8 weeks. You will also, most likely, have an abnormally high SED rate. It will vary if you're having a Sjogren's "flare". BTW, that's the best time to make the doctor's appointment - when you feel awful, like you can't drag yourself anywhere. I'd recommend finding a doctor that will treat ALL of your symptoms. Treat you as a whole person with this variety of things happening that may seem unrelated, to you. Tell your doctor every little thing. Sjogren's is SYSTEMIC. It affects your whole body. Yes, there are specific markers like the dry eyes/mouth thing but many Sjogren's symptoms mimic other diseases. Diagnosis is often overlooked both due to doctor indifference & lack of persistence in patients. There is no defined Sjogren's protocol for treatment. It's a "treat it as it appears" approach for most doctors. (bummer) But, a protocol is being developed now & the goal is that it will be available to doctors in 5 years (I know, sounds like an eternity but, like breast cancer, you have to start somewhere). I've recently been excepted at John Hopkins. They have a specific Sjogren's department & a doctor heading that clinic who has chosen Sjogren's as his life work. My first appointment is October 18. I've received volumes of "stuff" from John Hopkins regarding my appointment that will be two full days. I'm got appointments for about a dozen specialized tests. I've got advanced Sjogren's & frankly feel just about defeated. After 50+ years, it's taken a toll. But, I accomplished a lot with my life - Sjogren's be damned. I don't know if my disease process will help you identify what you're experiencing, or not. But, don't ignore your symptoms. If they sound like they could be Sjogren's - be persistent. Just know that it will be a journey to diagnosis. Not a short sprint. Since getting me as a patient my PC doctor has been able to make a diagnosis on another women for Sjogren's. She's thanked me saying she would have overlooked the clues had it not been for having me as a patient. We're learned together about Sjogren's. So, doctors are becoming more aware & Venus Williams' diagnosis, hopefully, will also draw more attention to this autoimmune disease. mboston, don't give up. If your gut feeling is correct (and, IMO, our bodies usually tell us the truth) then you'll need to stay in your doctor's face until you get a blood test that pops positive. That can be illusive. If you're having a flare...make an appointment. Tell the receptionist that next week is not OK...you need an appointment tomorrow! /tricia...See MoreDiagnosis - it's been 2 hours
Comments (145)Thank you, it helps. And it is easier to talk to strangers about it. Today I repeated my story 5 times - 1st the nurse, then the radioloist, then the oncologist and the social worker then the doctor. The radiologist scared me out of my wits! She examined me and then she said the size of the tumour, which I didn't hear. Then she felt my nodes and said they felt fine. But she added that I am going to need a mastectomy asap with a LOT of chemo! Then the oncologist made me feel a bit better. She examined me and this time I heard loud and clear 7cm which is what the report said. She felt around the nodes but did not say anything. Then had do all sorts of tests such as touch her finger, walk a straight line, etc. She suggested chemo right away and said that she has worked with the team back home and they're very good. She even wrote out what she would do, and said that I would be doing chemo every 2 weeks. 4 times on one medication, and 4 times on another one, plus shots to increase the white blood cells. So I figure it will be 4 months. She said that I would lose my hair which is no big deal because half the hair on my head isn't mine anyway. Lol Then my mom came in and then the social worker. Thought she was going to check into my mental state but she didn't seem concerned about it after she found out that my insurance company approved everything without the doctor's consent. Was wondering why she kept bringing up insurance. Then Dr. Karp arrived and he had already talked to the others. He examined me also and dug deep in the node area again, but did not say anything. At this point I didn't want to know so didn't ask. He agreed with the oncologist but said that I would still need the mastectomy after the chemo. I need the pet scan, heart check etc to see if it's spread to any organs. So I am a stage IIIb or IIIc but if it's in the bones, liver or other places that I'm stage 4 which is considered incurable. They stage and treat according to the largest tumour and both the oncologist and the doctor measured the hard mass that appeared after the first biopsy. If that's the case then it's worse thana that because they did not measure it with the mass that appeared after the 2nd biopsy, which wasn't on the reports. I had read that others had these masses appear after biopsies and they took almost a year to disappear so I am curious to see if these shrink with chemo. In the meantime the pain has just about left, but there is a lot of pain under the arm of the opposite breast, which started after the second biopsy when they put the clips in. Now I'm wondering I'm allergic to them. Oh, and the pain subsided right after I landed which tells me I'm under pressure in my country (snork). There are sooooo many people from there out here getting cancer treatments. The limo driver joked that the Staybridge/Sonesta should be changed to our country's name. So here I am ready to fight and be a pain to everyone, including you. My weight is finally under 150 which is how this whole thing started. Horrible way to do it though. I do feel better since the oncologist gave me a plan that she would do. If I can read it properly it says Adriny..., cytoxan, neulasta, taxol and something else I can't read but I'll use this to compare to what they suggest back home. They did not order any tests to confrm/deny what was done at the lab previously which tells me that they're comfortable with what they saw on the scans. Those who know me knows the country but I'm reluctant to name it right now because I'm not portraying it in a good light. But my doctor seemed to be spot on, although slow. I called today for him to arrange the appt with the onco but as usual he wasn't in today. Then he has to write a letter, so it's looking like next week before the chemo starts. It seems like I've wasted time coming here but so many people kept warning me about mis-diagnoses back home so now they have it! The end, lol....See Moreclubm
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