My ANA Was Negative

Discussion in 'Fibromyalgia Main Forum' 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 ;)
  3. gknee

    gknee New Member

    I too had the symptoms of Sjogren's. My test came back negative too. My Dr. Dx'd me with Non-Sjogren's sicca syndrome. Essentially, it is Sjogurn's with out the autoimmune issues.

    I too was on HRT. My GYN weaned me off over a 4 year period after a hystorectomy. My Rhumey said when I went off the HRT finally it was the trigger for my CFS/FM. He said the going of HRT or menopause is one of the biggest triggers for FM.

    Drs and nurses can have a god complex. I hope you get the HRT straightened out.
  4. heapsreal

    heapsreal New Member

    I have just started pregnenolone and it has helped alot with energy etc but one thing i have noticed is its ability to lower inflammation, normally my knees click when i squat down and this has been greatly reduced, i wonder if it would help u with inflammation of your eyes. pregnenolone also seems to balance all the hormones as it flows down to all the other hormones and getting them going if needed, like the sex hormones, cortisol etc great for adrenal fatigue or any conditions involved with alot of inflammation. But like Jamin mentioned , finding a doc who knows much about it is hard, intergrative doctor is what u have to look for.

  5. Mikie

    Mikie Moderator

    Fight, I answered you over on the Chit Chat Board. I am so sorry about your knee. Please let us know how you are doing. As I mentioned there, I am keeping you in my prayers.

    Jam, funny you mention DHEA. I was researching the HRT and found DHEA mentioned as a potential substitute for it. I'll check it out. Appreciate it.

    GKnee, I had a tubal when I was only 24 and they now say that this surgery will start perimenopause within 3 years. I didn't start taking HRT until my mid-40's but have been on them about 20 years now. I don't have breast cancer risk factors but I do have a strong history of heart attacks in family members. My Mom and her sister, and everyone else on that side of the family, died of massive heart attacks. When I don't take the HRT, I have heart palpitations. The Wicked Nurse said they have meds for that. Hmmmm, I wonder what risks those meds entail--probably more than taking the HRT in my case. Every time there is a new study involving HRT, everyone panics and changes how they prescribe. It's just CYA medicine. It's very interesting about your diagnosis without the inflammation issues. My eye doc said it is inflammation which causes the problems with the oil glands in the eyelids.

    Harpseal, thanks for the tip. I'll check into it. I have so much on my plate right now that it may take some time to find someone.

    I'll be seeing a rheumy or my old FMS/CFIDS specialist to get further testing. Wicked Nurse is afraid to ask for tests which ins. might not pay for. It's probably because she is too lazy or apathetic to use sufficient diagnosis codes on the paperwork. Or, it could be that she is so busy playing her head games with her patients that she just isn't efficient. Whatever! I'll be finding a different PCP later when I get through some of this.

    Thanks again, everyone, for letting me rant. It helps to vent. Wishing you all the best of everything in the New Year.

    Love, Mikie

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