My ANA Was Negative

Discussion in 'Chit Chat' started by Mikie, Dec 23, 2010.

  1. Mikie

    Mikie Moderator

    I'm glad of that but still don't have a clue as to the Sjogren's symptoms and what to do. I will be seeing a rheumy, that is, if, after reviewing my doc's notes, he deems me worthy of his services. If he doesn't, I'll see my old FMS specialist who can probably be of help. Down here in God's waiting room, rheumys come at a premium.

    I have an appt. with an ENT next mo. to see what is causing my chronic sinusitis.

    Saw the nurse practitioner yesterday. There's something wrong with her. She has a god complex worse than any doc's. She's moody and when she's in a dark place, she is rude and argumentative. Yikes! Medically, I think she's better than the doc but her personality problems are starting to affect her practice. My old doc is back on my plan but I really hate to be switching docs. I think I'll see the specialists and limit my exposure to her as much as possible.

    I've been on HRT for about 20 years and she is forcing me to wean off of them. I guess this is the new protocol regardless of whether one has breast cancer risk factors or not. It's CYA medicine based on a fatally-flawed longitudinal study of nurses. Because the study used only nurses, it cannot be applied to the population at large. At least one kind of breast cancer is thought to be caused by the EBV. Who encounters more pathogens than nurses? I'm seeing my GYN and will ask him about this. If I have to live without my HRT, I guess I'll just have to accept it. Without my hormones, I have heart palpitations. The nurse practitioner wants me to take a heart med if the palpitations return. Hell, that's probably riskier than the HRT.

    OK, my dear friends, I've vented my spleen. Thanks for listening.

    Love, Mikie
  2. fight4acure

    fight4acure Member

    I'm sorry to hear that you're nurse is a you know what. I had to deal with a few bad nurses, one being the Ortho dr's nurse who got mad and sassy with me when I was on crutches, as it hurt to put weight on my leg/knee. She dared to ask me why I'm using crutches and then sent me off to the room to wait for the doctor. The doctor also perpetuated the nurse's bad and mean attitude, acting as if I was faking knee problems/pain. Come to find out I had to see two more ortho doctors because the doctor wasn't helping me to recover. Then the second ortho doc showed his bias against me because I have FMS, and he reemed on me, in front of two nurses how I've had tons of MRI's over the years. My doctors recommended those tests, so why is he hurting me with his lecturing, pretending as if I was faking my illnesses as well. When I cried over the phone talking to the CEO of the clinic, the CEO stood up for the doctor and treated me like I had a mental illness, and then he claimed that I was just wanting attention and more tests done on my knee, wasting lots of money on tests. Then my regular doctor referred me to UW-Madison hospital ortho doc, and he also looked at my medical history and med list and was biased before he walked in the door. Then I forgot how I kept hurting my knee because it kept getting worse. He referred me to phy. therapy, and diagnosed me with the pain syndrome of my knee.

    So I ended up going to phy therapy. Come to find out, my severe pain is caused by my knee cap continuing to subluxing/dislocate when I bend the knee. I went to two and a half weeks of phy therapy and then I did all they asked and strengthened my leg muscles, but unfortunately my knee cap still pops, and it's very painful and causes more pain throughout the day/night. So I have an appointment a month from now back to the UW doc. I call these dumb doctors, that won't look into my problem and guess at a pain syndrome but never prove it otherwise, palm readers. I'm so tired of palm readers! How is it that several doctors get away with guessing pain diagnoses for those of us with these illnesses, rather than trying to help me find out what the problem is. I'm so ticked off at docs right now. (if you look up subluxation of the knee cap, you'll see it is far more painful than the pain syndromes these palm readers gave me.)

    The worst news is that my doc has left the clinic I normally go to, so now I have to try to trust some other doctor, more than likely another palm reader. Sad to say, this was the only doc that believed me when I had odd or painful symptoms. :( he says he'll keep in touch. I may have to go where he is if I can't get a doc who actually understands that its not ok to dismiss all of my symptoms.

    I hope we both get some answers and med staff that will actually treat us with respect, as well as act professional, without allowing their own stupid biases about us.

    I'm venting too. Thanks for the topic, very good topic.

    Fight ;)
    [This Message was Edited on 12/24/2010]
  3. jole

    jole Member

    Like Diane, my diagnosis came from my opthamologist. My PCP is a Nurse Practitioner, and she says she still has a lot to learn. She doesn't always know the answers to my questions, but is very caring, believes me (and in me), and if she knows where to send me on to she will. The last time I was there she told me my case comes up at a lot of meetings because she simply doesn't know what to do for me, and so far neither does anyone else. I've seen rheumys, neuros, docs who 'claim' to know all about FM but don't, and in a small town that's as far as it gets. But the caring and listening goes a long way in my books.

    I'm so sorry you have a grinch in the medical field, 'cause that really makes life miserable for you. I also wish you could get answers to your questions (as with all of us) because it's so darn frustrating to always hear things are 'normal' when we sure don't feel normal. For me, I don't expect answers any more, but you have always been so proactive in your care that it has to be downright painful to be treated that way and also not know where to turn next.

    Wishing you the best.....and Merry Christmas! ......Jole
  4. Mikie

    Mikie Moderator

    Thanks for your responses.

    Fight, I am sooo sorry for all you've been through with, not only your knee, but these nasty people you've had to deal with. My stepdad was a doc and he hated other docs who thought they were God. He even had a funny joke about it. Most of his jokes are too dirty to tell. His patients used to bring him jokes because he loved to laugh. His patients loved him and he delivered most of the babies in the small town in which he practiced. That was back when family docs did everything. I hope you can get help with the knee. Let us know how it goes. I'm sending up a prayer.

    Diane, you have been so helpful. Yes, I have been researching online. The witch would barely run the ANA so, obviously, I didn't get the specific ANA tests. My sed rate was higher than it usually is but still within normal range. I'll either get further testing from the rheumy or the physiatrist/sports doc who is my specialist for my FMS/CFIDS. This nurse seems to be afraid of running tests in case my ins. won't cover them. My own daughter is a nurse and she tells me that the ins. companies are getting more and more strict about diagnosis coding before they pay. She makes sure she uses codes which will sail through the process. I certainly have enough symptoms to warrant tests.

    Jole, I will talk to my eye doc because he probably already suspects Sjogren's. I'll share my other symptoms with him so that it will be on my record there. I took a list of my symptoms to the nurse. It fits Sjogren's like a glove. I know that doesn't mean I have it but I need to find out what I do have. I had been managing my health for so long and now, it's like a bomb has gone off inside of me. I told her that and gave her the list and she just kept saying, "What do you want?" I reiterated what was on the list and she said, "You already told me that; what do you want?" I finally told her that's why I was there--to get some advice about what to do next. This is only part of what transpired which was totally idiotic. When I left, I was thinking, "What just happened?" I always treat others nicely and with respect and I guess I'm always shocked when they don't act reasonably. She's just playing head games and I'm eventually going to find another PCP.

    Whacko nurse told me that she was cutting off my HRT as I've been on it for a long time. I think it's CYA medicine but I understand that every time there is a new study, the docs completely change what they are doing. I have no breast cancer risk factors but if I don't take the HRT, I get heart palpitations. Heart attacks do run in our family. If that happens, she wants to put me on a med for palpitations. That probably carries more risk for me than the HRT. I think the whole practice of medicine is going to hell in a handbasket.

    OK, it's Christmas so I'm gonna quit ranting. Thanks everyone for letting me vent. I'm wishing everyone Merry Christmas, Happy Holidays and the best of everything in the New Year.

    Love, Mikie
  5. fight4acure

    fight4acure Member

    Thanks Hon... I've been under the weather with both depression and a bit of a bug and horrible migraines. Will see doc towards the end of January in regards to the knee. Physical therapy helped a touch, but knee is still hurting and popping. Keep in touch with me please, if you can bare my abscenses at times. Hope things are going better for you. I remember you telling me about your dad being a doctor. That's another reason why you have such strong knowledge about medical stuff. Good doctors never believe they are Gods. Your father is a rare jewel when it comes to having a nice, intelligent doctor, who is an all-around kind of doc, as there are few out there.

    Fight ;)
  6. IntuneJune

    IntuneJune New Member

    Addressing the chronic sinusitis, the ENT hopefully will run a thorough test on the immunoglobulins. These tests were how my immune deficiency was found. Looking back, my PCP apologized to me, stating, he was so sorry he had missed this. The pulmonologist found the deficiency.

    Immune deficiencies IgA, IgM, IgG, subclass abnormalities are considered primary and inherited. I am the only one in my family diagnosed. As you know, I am 65, rather late in life to be diagnosed.

    When I have gone to the ID meetings, listening to all the folks talking, while sitting around the table, I think, OMGosh, they sound like fibromites.

    Unfortunately, treatment has not improved my FMS or helped the symptoms....initially I did get relief and then it slid back.

    On a side note, my SS was not officially diagnosed until that ANA was positive, the rheumy then thought, ok maybe she has SS.

    Hope you had a wonderful Christmas, I visited my grandchildren (11 hours away) and had a wonderful time but came home with the respiratory flu my granddaughter had.

    Love, June

  7. Mikie

    Mikie Moderator

    I've been away myself as my old PC got a virus and neither it nor my old laptop would connect wirelessly with my new wi-fi network. I'm getting rid of the PC but connecting the old laptop to the router with a cable to serve as my workhorse computer in my office.

    Fight, I'm so sorry the knee isn't better. My Dad was really my stepdad and didn't raise me but he loved me like one of his own and I loved him. I had to learn a lot about meds and treatments when I got sick with FMS and CFIDS. Thankss for the compliment but I feel as though I know next to nothing and now, I'm starting over, almost. My knees are soooo much better now that I'm not on my feet so much. That and the Sketcher shoes when I was working. Hope the knee improves. If physical therapy doesn't do it, you can try just resting it for a few days. Hope your migraine gets better too. That might help with the depression. My prayers are with you.

    Olivia, the rheumy never got back to me after my PCP sent him the info. Docs down here, especially rheumies, can pick and choose whom they will see. After we get my sinus problems straightened out, I'm going to go back to my old specialist for FMS. No reason he can't run the tests. I've gotten the mammogram out of the way and still have to see the GYN. I'm way behind in all my maintenance. Tues., I'm getting my sinuses scanned and having another eye dryness test done. Thanks for your suggesstions. I'll see about another doc if my specialist can't help me.

    June, I'm glad you had a good visit but sorry about the virus. I'm wanting to get diagnosed to see if I do have SS but, as you know, there isn't a cure and not really any good treatments except to just treat the symptoms. Kinda like everything else we have. Strangely, my FMS symptoms have retreated since the big flare of whatever-it-is (SS?). I'm glad of that because after the topical chemo for all the skin cancer on my face, I need to use creams with Retinol and vitamin C. They have botanicals in them, a no-no for anyone on the Guai treatment. I still take the Guai and it seems to still help me. With this sinusitis, it probably helps there too.

    Well, Dear Friends, I'm going to go watch the football game. Thank you all so very much for your interest and help. Keeping everyone in my thoughts and prayers.

    Love, Mikie