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    Old 08-24-2015, 04:12 AM   #1
    lintek55
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    Positive ANA tests since 2012

    I am very confused and don't know how to go about writing what I have to say since there's so much that's occurred through out the years on and off. strange things physically out of the blue, like my psoas muscle became inflamed and very painful for no reason. I had to get an injection in it which worked.
    It all began in the year 1998 right after my divorce.
    I went to work on a cold wintery day and by the time I got to work, my fingers were KILLING me! The pharmacist whom I worked for told me to put them under warm water which hurt worst.
    they turned colors and eventually went back to normal when I got warm.
    went to a dr. who said it was raynauds syndrome. gave me a beta blocker and explained how the tiny vessels go into spasm and cause the pain and discoloring.
    I can't even hold a container of ice cream for too long in the store.
    my poor toes get it too. In the car. and forget about mittens rather than gloves, NOTHING works to keep my fingers from hurting come winter time.

    years later, started getting arthritis. found out by testing. different family dr now. In spine, neck, I think shoulders because the pain is horrible at night time when I'm sleeping and can't open arm at elbow some nights. goes into a tight like grip and have to pry it open slowly.
    scalp goes numb and tingly, and face when laying on my husbands chest watching t.v., I guess neuropathy of the hands and arms. Hands, fingers and up to elbows my arms go numb in the night. One night I fell asleep without knowing my arm was above my head. when I woke up, I couldn't feel my arm or hand. it was as if I had a stroke and couldn't lift it to bring it down, I had to flop it down with my other hand and when blood flow came back in it, I wanted to cry it hurt so bad. I freaked out screaming I couldn't feel my arm.
    lol.. I can laugh now, but at the time it was very frightening.

    I have the hair thinning and hair loss with new hair growing back in short pieces, along front and side of scalp and the new hair is a different fuzzy texture and color. grey.
    I kept having my dr. check me for rheumatoid arthritis and C-reactive and was elevated a couple times. Was sent to a rheumy and diagnosed at having fibromyalgia. this was YEARS ago. the first rheumy dr.
    I also have osteoporosis in my spine and hip many years now and haven't had another test in many years. I stopped going to doctors because I got so sick of it. never getting clear cut answers, and always feeling like I was a hypochondriac. I just changed my diet slowly from an acidic diet to an alkaline diet and started taking supplements and minerals.
    the 3rd and last rheumy dr. I had a couple yrs ago tested my vit. D level and I was deficient. I can't recall the number right now but it was very very low.
    she gave me an RX for a couple months and I could finally turn my neck while driving without screaming in pain.
    I finally could walk up a small incline of a hill to return from lunch to work.
    there were days I looked so pale, weak and sick that my new boss told me to go home. I eventually lost that job unaware that there was a probation period that you can only miss so many days in a certain period.
    I loved that job. all because of some mysterious illness I lost my favorite job that paid the best out of all my jobs I've been through.

    I continue to see my family Dr. once or twice a year. I went to him when I broke out with a small rash on my back by the bra line which turned wide spread on my back towards my hips.
    sand paper texture that itched like crazy and wouldn't go away.

    next year. rash again started on right side of rib area. two weeks later torn the meniscus in my left knee just from mopping a floor. I don't go to a gym and have never been an athletic type of gal. I always got picked last in gym to be on the teams. I'm more artistic.
    how on earth out of no where could I just tear my meniscus??? that was the left knee. I waited 3 months to see my dr. the joint kept sliding in and out when I squatted down to do something. it would swell and go down on and off it would feel fine and then not again. that's what made me go when it almost got stuck out of joint permanently.
    got an MRI, was sent to surgeon, just had surgery last tues. meniscus was torn from left to right.
    the day after I injured my left knee, the right knee started acting up. It feels like there's something growing in it. I can't explain it. it clicks when I walk too. I told my dr the day I saw him for my left knee but he didn't want to focus on both he said. just the critical one.
    I used to have to wear braces on my wrists years ago because the pain was so bad I couldn't hold dishes, or pots and pans, etc. I used to wrap them with ace bandages. that eventually went away.
    then the thumb joints in both hands swelled and bone grew and hurt. pain went away but disfigurement didn't.
    2nd rheumy dr I only saw a few months said I had very weak knees just by looking at them. I should have started therapy THEN! He also said I didn't have RA.
    sorry If I'm jumping around. it's hard to recall in order what's been going on. I'm sure I've left things out.
    as I stated above, I just stopped going to doctors. until I got ANOTHER body rash. This happened right around the time of my knee problems. On both side of my pelvic joints, a small, red, bumpy sand paper texture rash appeared again!!!! It lasted weeks and weeks. It even left the skin looking darker than before. no explanation from family dr.other than he thinks I might have Lupus. It's the very first time he's mentioned it. being both knees are acting up and I discovered through my own research by asking the Dr to give me copies of all my blood work that were positive ANAs.
    It started back in 2012. Ive had prior blood work which never had positive ana's. only c-reactive protein and something else was positive.
    I made an appnt. with a new rheumy dr. 3 months ago. she's so good that it was so hard to get in. the day of my appnt. I went to start my car and the battery was dead. can you believe it!!!!! I had to reschedule. now I have to wait ANOTHER 3 months to get in.
    I figured I've waited this long, why not more.
    My mother used to get a reddish, rash on facial cheeks and bridge of nose. This was many years ago mind you. My mom has since passed away. She had some type of bone disease because she eventually went from standing straight, to bent over looking at her feet as she walked. her knee caps bent inwards and her toes were all gnarled and could only fit into one type of sandal and one type of winter boot in winter. she NEVER went to the doctor., nor did my father. both stubborn Europeans from Slovakia. which means she never brought my twin brother and I to dr. either. maybe that's a good thing. no antibiotics growing up. lol
    when she fell down and broke her hip and she was in recovery, the surgeon came out to me and reprimanded me stating she had something, but I didnt' write it down and wasn't aware of medical conditions then. we all thought she just had osteoarthritis. bad osteo.
    so now I'll never know what she had. I was just at my sisters house last week and I saw a picture with my mother in it and guess what? she has the butterfly rash on her face. I can bring this picture to my rheumy dr. when it comes time for family history. My older brother also has a very rare bone disease called "gorhams disease", or " vanishing bone disease". back in the 60's when he complained of bone pain In his ribs, they didnt' have a clue what he had. he was in the Air Force then.
    He's been on pain meds now for many many years and has two knee replacments. he can sneeze and crack a rib.
    THERE! I'm done. I've written a book for crying out loud.
    This is the reason I don't want to go to a new doctor.. because it will be confusing to have to explain such a lengthy history of problems.
    My blood work says, the ANA screen and ANA titer are positive with the count of 1:80, homogeneous pattern. it states that it's above high normal.

    I have copd, I get sores on one side of the inside of my nose and it's painful. had swollen tubes one year,( hydronephrosis? ) that leads to the kidneys and bladder one year, and my liver looked pocked marked as my gyno explained when he scoped me for an ovarian cyst. He asked me if I drank heavily. I didn't. he made me feel horrible. it had a thin gauze like film over it too.
    I've had multiple abdominal surgeries since and liver has healed because the dr. said it looked fine to her.
    I used to have high blood pressure which I was put on meds for, but that eventually stopped all together. so I stopped the pills and now my blood pressure is super low. crazy.
    does anyone else here reading this have a similar situation? does it sound familiar? do you think it could be Lupus? or connective tissue disorder?
    should I go to the rheumy and seek out a diagnosis? or just forget about it all together? I'm confused. I just dont' want to wind up bent over and knee knocked like my mother, even though I love her, God Bless her.
    I wish you all well.

     
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    Old 08-24-2015, 01:37 PM   #2
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    Re: Positive ANA tests since 2012

    Wow you have had a tough time for a long time. Many of your symptoms could fit with lupus or something close in the autoimmune or connective tissue disease family. Here are some suggestions: See if you can get into the rheum on a cancellation. Call the office and ask them to call you if one comes up, or call them frequently and ask if they have anything sooner than 3 months away. Symptoms that you have consistent with lupus include the joint pains, hair loss, short hairs around hairline, called "lupus hairs", Raynaud's, nasal ulcers, low Vit D, peripheral neuropathy (or maybe carpal tunnel syndrome?), rashes that leave skin darker after healing (hyperpigmentation), muscle inflammation, osteoporosis, plus the elevated CRP and ANA. Plus a probable family history. Lupus is a TREATABLE disease. Not curable, but treatment can help a lot in how you feel and function. You need to pursue a diagnosis and get on treatment. Please ask to have Vitamin B12 and folate levels measured along with the other blood tests you will need, as deficiencies are common and can cause peripheral neuropathy. A calcium channel blocker like amlodipine can help the Raynaud's if your low BP will permit it's use (is Rx). There is lots of room for improvement for you! Make a concise list like the one above of your main symptoms to show your new rheum. A few words for each line is all you need. A skin biopsy when you have a rash may be helpful too but MUST include immunoflourescent studies looking for a "lupus band". A dermatologist can do this type of biopsy, but a regular biopsy will NOT suffice. Good luck and let us know how you are getting along with your diagnostic process.

     
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    Old 08-25-2015, 03:25 AM   #3
    VeeJ
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    Re: Positive ANA tests since 2012

    lintek, hi & welcome. I think you should see this rheumatologist. I also think you need PROPERLY evaluated for a variety of autoimmunes. Maybe you were, maybe you weren't, it's impossible to know... Here are more thoughts.

    Re symptoms. While certain that you list can be seen in lupus (hair thinning, low Vit D, Raynaud's, etc.), to my mind that doesn't *yet* rule out other conditions that are "close cousins" to lupus, e.g., RA, psoriatic arthritis, gout, various spondyloarthropathies, etc.

    Re tests. I think you need more comprehensive tests! For example, you say both thumb joints are deformed. Lupus can cause joint deformation, but only rarely; but RA can, and so can psoriatic arthritis (and there are likely more). You said that one rheum tested RF, then ruled out RA; but from the literature, that's seems way too simplistic a take on RA. You'd expect OTHER tests, like anti-CCP (anti-cyclic citrullinated protein), radiographs to look for joint erosion, etc. Also---and this is a huge point---upwards of 50% of RA patients are seronegative at onset, and 20% of RA patients NEVER turn seropositive.

    Re skin rashes. Lupus rashes tend not to itch, or not to itch much, with the exception of bullous lesions (those are blistery & watery), and they tend to appear on photoexposed skin. I'm not saying yours couldn't be a lupus rash, as anything is possible in these conditions... More like, OTHER things may be possible as well. Psoriasis for one. And because one doctor saw possible liver "pocking", something like autoimmune hepatitis (AIH), which can cause extremely itchy rashes that can discolor.

    Other tests that make sense. Most rheums run thyroid labs, or make sure another doctor has run them recently, because thyroid disorders often co-exist with other AI's. Plus, symptoms can overlap: hypothyroidism can cause hair loss, joint pain, and itchy rashes.

    Re family history. AI's can cluster in families, yes, but family members don't necessarily get the same ones. For example, my mom had probable antiphospholipid syndrome and Raynaud's, my only sis has Hashimoto's thyroiditis, I have lupus, and a first cousin has ulcerative colitis.

    I too hope you get a faster appt. with the new rheum and that you stay in touch. In the meantime, drop updates or more questions whenever the mood strikes, OK? Wishing you luck, answers, and help!

     
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    Old 08-27-2015, 03:57 AM   #4
    lintek55
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    Re: Positive ANA tests since 2012

    Thank you LadyBud and VeeJ for your very helpful and informative replies.
    I really felt like I was going nuts with all these different things going on which is why I wanted to give up in pursuing seeing a rheumy dr. I feel like she's just not going to listen to me. So I'll take your advice, make a list, keep it short, and ask for the vit.12 and folate levels to be tested.
    this would be wonderful if it was low levels of either of those two because this would help me be able to be more comfortable and be able to possibly sleep through a night solid though. I VERY rarely sleep through the night solid anymore.
    I do agree that more extensive testing needs to be done and if I should ever get another rash, I will try to contact a skin doctor to get that biopsy you mentioned. The specific one.
    you both have so much knowledge. which gives me the ability to do so research on the specific dx's you mentioned it "could" be.
    I appreciate your replies and will keep in contact when I find out more.
    I did ask the secretary to call me if anyone cancels at the new rheumy's office, but my unconscious mind was thinking that she was just yessing me and really wasn't going to call me with a cancellation.
    I'm wondering if I should just call a different rheumy dr. so I can get in quicker than the 3 months? I am going to be extremely disappointed if this dr doesn't meet up to my standards after having to wait a full 6 months total to get into see her.
    thank you both again.
    I wish you both good health.

     
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    Old 08-28-2015, 03:51 AM   #5
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    Re: Positive ANA tests since 2012

    Lintek, is the rheum whose appt. you missed (car battery) part of a larger practice? In the metro practice I finally contacted, the lead doctor was booked solid for 4+ months, so I booked instead with another doctor in the practice, my theory being that a strong lead doctor would affiliate with "good" doctors.

    More suggestions on finding a rheum. Contact local or national chapters of foundations. Look for mentions in magazine & newspaper articles on AI's. (Be sure to ask about insurance before booking, though.)

    I was asked to fax before my 1st appt. my health history, in my own words. I kept it to < 1 page by using sentence fragments, bulleted lists, etc. Early life, I kept very short. From there on, I organized my list by symptom & order of appearance. e.g., summer 1966, first occurrence of widespread bone/joint pain---then appended notes about recurrence. Or May 1997, first appearance of rash, incl. short description---then appended notes about recurrence. (Yell if that structure looks promising but doesn't make enough sense.) Whether you're asked to prepare such a list or not, it makes your symptoms & chronology jump out, so it's useful for YOU as well as the doctor. Feel free to dry-run it here, if you wish.

    Also, any labs you can get your hands on that show abnormal results would be worth taking along. Also, any "full-blown labs", where a doctor ran as many tests as he could think to do, the more recent, the better. (This helps to show areas NOT previously considered.)

    As for contacting a skin doctor if another rash comes up: I'm not sure I would go out on my own. Instead, I'd prefer the rheum to pick a skin specialist for me. Reason: not all derms are competent at diagnosing the rashes seen in AI's. I realized too late that many of my derms were more into cosmetic procedures (Botox, etc.) In fact, the head of dermatology at my local hospital was my worst derm consult of all. In contrast, the derm my rheum picked for me was everything you'd ever want in a doctor.

    Not sure where in NYS you are---close to any teaching hospitals? That was another mistake I made, staying in the suburbs when I should have headed to a big city. Reason: the law of large numbers, meaning the city practices likely see a wider array of the AI conditions in all their varied presentations. (But you could try closer first, then ramp up if you're not getting traction.)

    Another thought: borrow library books on lupus & scan sections that look potentially germane. Several are very detailed & also discuss how lupus is differentiated from "close cousins". (Seeing the name of a specific lupus rash I'd never heard of was my breakthrough. As soon as I located a pic of that rash, I had in my mind a plausible candidate. It boiled down to four words, the name of a rash, which is weird, after all those years of trying & getting nowhere.) Anyhow... keep us posted, OK? Thinking of you & wishing you better days ahead!

     
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    Old 09-04-2015, 03:26 AM   #6
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    Re: Positive ANA tests since 2012

    thank you veeJ,
    I appreciate your help. I see you understand how flustered I am about how to explain all that has occurred. I wish I had mentioned this sooner so I could have made the list you suggested. I'm going to have to back track some how. or just copy what I wrote above.
    I live in the suburbs, not nyc. I am afraid to go to the city to see a Dr. even though they may have more clinical experience. Its too fast paced in the city for me. I went once to an ENT hospital which a pathologist did a 3rd opinion on the biopsy of a lymphnode that was taken out of my neck back in 1997. never again. lol

    What did your diagnosis wind up being if I may ask and did it take you a long time too to get this diagnosis.
    If I'm feeling ok, other than the aches and pains of all the arthritis that's spreading thought out my body, would it really be worth it for me to go through all this just to see why my ana's have been positive for a few years?
    it's not life threatening I mean. so should I even go through the trouble of finding another dr. in her practice.
    another back rash just started again a week ago, which is spreading and itches in the mornings, so I'm putting calamine lotion on it for the itching and to dry it up. The last back rash started the same exact way and same area. I'm wondering if started due to the operation I had on my left knee two weeks ago. maybe it activated the immune system?
    it's just taking the knee longer to heal than I thought it would. I never had knee problems before. and out of the clear blue sky my knee joint slid out and tore the meniscus??? so weird. I still can't get over it. just from mopping a floor?

    I will take your suggestion and call the practice to see if they can get me in with another dr. I just don't want to wind up getting the one my 26 yr old daughter went to and she had a horrible experience.my daughter has some horrible immune thing going on. we thought scleroderma, because her entire left arm is being mutated. up to her shoulder. it looks like it's eating into her shoulder bone. the collegan is thick and is squeezing her vessels and hurts her. she has bone pain in a lot of places but as a child she did have lymes and complained through out her life that her knees hurt her. mine did too as a child and my mom said they were just growing pains.

    thank you again. I'll keep you updated.

     
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    Old 09-04-2015, 05:23 AM   #7
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    Re: Positive ANA tests since 2012

    Good morning. Re writing up your history in your own words. The only doctor who ever asked me to do this was the metro rheum who dx'ed me; he knew how to proceed even before I walked in. But even if not asked, it's good to write one, so YOU can answer questions & not omit anything big.

    Re going to city. I can appreciate what you're saying about fast-paced because I feared that too. But ironically, I found the opposite: organized and far more civil than my local doctors---but best of all, wildly better at diagnosis & communication. But depending on where you are in NYS, I bet you have quite a few choices of good rheums, it wouldn't have to be Manhattan. And another thought: many metro doctors keep some suburban office hours.

    My dx was lupus. I'd had problems from early childhood, then a terrible hit at 13, then more problems over the next 35 years. I didn't have recurrent rashes until late 30's, which was actually unfortunate because photosensitive rashes suggest lupus as one possibility. Worse, my rash and blood labs weren't the "classic" ones seen in lupus that most doctors recognize; instead, I fell into a "subset" that my local doctors didn't know about. (In contrast, my metro rheum roared into action in seconds.)

    How is your daughter doing, and does she have a firm dx? Wishing you BOTH well! Let us know what happens next, OK? Sending hugs!

     
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    Old 09-04-2015, 09:20 AM   #8
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    Re: Positive ANA tests since 2012

    It is interesting that many patients with autoimmune disorders relay a history of "growing pains" in legs as children. I certainly had them and now have lupus and RA. In regard to the rashes, my lupus rashes occur from sun exposure and itch like crazy. I once had a vacation to Hawaii ruined because of a sun rash before I was diagnosed with lupus. Of course, back then, I was trying to get a tan. Now I stay lilly-white (better than itching). Hope you get in quickly to see the rheum, and get somewhere with investigation!

     
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    Old 10-19-2016, 04:49 AM   #9
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    Re: Positive ANA tests since 2012

    LadyBug and VeeJ,
    It's lintek again. It's been a year since I've last posted about my problems because most of my symptoms of pain had gone away or in remission as I was told by another person. I never made it to a rheumy dr because my life is too crazy and hectic to go when planned.
    I just wanted to know if either of you suffer muscle pains so painful to the touch and only lasts for approx. 2 days after doing hardly anything but stretching into the trunk of car to retrieve something.. it's the only thing I can think of that I was doing with the right leg.. the upper thigh to be precise and about a week ago it all started with pain in the muscle of my neck or a tendon because I was on a ladder looking cleaning our ceiling fan of dust.
    I had a low grade fever the next day and felt so horrible and in pain just in one area of neck. took too advils at the hospt, where my sister was staying and I felt like a new person.
    a week later as explained above, I now feel like the tendon or muscle is inflamed to the point where I can't even touch it with my finger.. JUST from stretching on that leg to reach something in car.
    This isn't signs of Lupus so could it be considered a connective tissue disorder? when I went to my g.p. for a tick bite in the summer I got a huge itchy rash where the tick bit me and I asked him to do the ANA again and this time it was higher than last time he did it. all because of the rash I'm assuming.
    negative for lymes disease.
    I dont' have time to go to a rheumy dr. just yet. I guess I really don't want to go period. otherwise I wld have by now, but I guess the stress going on in my life right now with my sister set the illness on again.
    is this possible?? I used to get strange inflammations like of the psoas muscle years ago and other symptoms as mentioned in my old posts above.
    do you get a low grade fever with connective tissue disorders? and pain in weird areas of body? maybe it's not lupus?

     
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    Old 10-24-2016, 03:09 AM   #10
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    Re: Positive ANA tests since 2012

    Lintek, yes, I get muscle pains but I have a neighbor with an as-yet-to-be-identified disorder who gets them a lot worse than I do. Her dx seems to be leaning to myositis or polymyalgia rheumatica, or something in that ballpark. Yes, I can get a low-grade fever along with a pain flare.

    The rashes that "count" in a lupus dx are those that are lupus-specific, meaning not "any old rash", but a rash that's a LUPUS rash. You can read about those in the sticky posts as well.

    Re ANA, what are your highest results? The problem with ANA is that it's not specific to any one condition. It can elevate in quite a few, and not just in rheumatological conditions---e.g., GI conditions can elevate it, so can skin conditions, thyroid conditions, various cancers, etc. Also it can elevate due to a passing infection, increasing age, or a family tendency. Also, level counts: its lowest reportable level, 1:40, isn't going to turn a rheum's head!

    And do you have copies of all your recent labs? What you'd look for are (1) anything out-of-range, and (2) which tests for AI's have been run. We could help on #2, I bet. For example, was anti-CCP run? It's a predictive test for RA.

    If you haven't done so, I think now is a good time to visit your library & borrow several books that cover lupus and its so-called "differential diagnoses". Did you ever locate the "sticky posts" (permanent info posts)? Look for the link regarding resources: it's on the main page above the user threads. I'd sit down with a tablet & bookmarks, then scan & take notes on only those sections that seem to pertain. See what your "master list" looks like, then feel free to share with us.

    Then next step: arrange your notes in chronological order. I arranged mine by first onset of each unique symptom, then appended comments on how often that symptom appears, whether it still happens, and whether it worsened over time.

    ET VOILA! If you can do the above, then you'd actually have a concise and coherent history to take to that NEW RHEUM you've been avoiding---IF you want to, that is. Point is, you'd have it ready, in case you pitched downward enough to REALLY want to try again!

    One other thought: there are something like 100+ forms of arthritis, only a portion of which are autoimmune.

    I feel for you & sense that you feel about doctors as I do... It took a lot for me to keep trying because I was so tired of being brushed off and/or mocked. I got beaucoup sarcasm and lots of snark. Arranging my history in a no-nonsense and abbreviated fashion helped me make that final push toward answers and help. Sending my best wishes to you.

     
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    Old 11-10-2016, 03:07 AM   #11
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    Re: Positive ANA tests since 2012

    Thank you once again VeeJ for your knowledge on all this difficult physical stuff going on in the body.
    My last ANA test in June was 1:180 when my Dr. did the lymes rash. I asked him to do it for me to see if had changed any.. and he doesn't do the CP test one on me. I guess the rheumy dr would do that, once I make myself go when I can't take it anymore.

    Now that my sister passed away 3 weeks ago I feel it's activated everything again.. I have a rash again that started 3 days ago and is spreading to other side of upper buttock area. It's basically my own fault that I don't just get this done. I am going to do the research as suggested by you for me to bring to the dr.
    I have a physical that' due next week but just with the GP.

    many thanks and be well,
    sincerely,
    Lintek ( you are such a kind person Veej) love ya!

     
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    Old 11-21-2016, 05:59 AM   #12
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    Re: Positive ANA tests since 2012

    Lintek, I'm awfully sorry to read that you lost your sister. My heart goes out to you & to your family. Keep us posted, OK, when you have the time and energy, that is... Sincerely, Vee

     
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