So Confused- no diagnosis

[healinghands201]

    I was a very healthy 34 y/o F who worked night shift as an RN, with 4 small children. I got sick in Oct. 2012 w/ what seemed to be a flu. I did not recover and saw the doc. ANA 1:80, WBC 4.4 -all else WNL. More specific labs for autoimmune neg. Symptoms: fatigue, weakness, joint pain, hair loss, mouth ulcers, morning stiffness, butterfly rash that lasted 2 days (I have pics-but rheumy doesn't want to see me unless it lasts more than a week-and doesn't want to see pics!), photosensitive rash on forehead, beginning weight 118-now 95lbs. On prednisone w/ high caloric intake no increase in weight. New labs= prealbumin high and lymphocytes 5.21 (since 2008 all lymphs have been 2.something), all else WNL. I do not have any s/s of infection. Chest x-ray revealed a nodule in R upper lobe. 3 days later CT was normal-nothing there. I now have enlarged lymph nodes in my groin and my neck. Dr said neck ones (which are very visible and rubbery) are just carotid bulbs. They are egg shaped/swollen/pulsing. I feel like I am going to die-slowly. I had to quit work and put off my masters for my NP. NO ONE can diagnose me!!!! My conditions list contains possible fibromyalgia and probable autoimmune. I am so confused. Where do I go from here? I am no longer the woman I was 6 months ago and my family is watching me waste away. ANY input would be greatly appreciated.

[elbamom]

Sorry, I couldn't help more. As someone who tried to get my daughter diagnosed for 16 years I understand the problems and brush offs most medical people do. I understand they are over whelmed and look for the easy solution but dang some of us are zebras not horses and the easy solution does not fit.

With your medical background I hope you can figure it out! Keep insisting and fighting to be healthy!

Good luck,
Elbamom

[healinghands201]

    Thank you so very much for your information! I looked at the site and IDF just does not fit. They have all stated that this is autoimmune, but won't give a definitive diagnosis. I have known for a while that this is lupus.....i can feel it in my bones-literally! I know my own body better than anyone. The result of the CT being normal was such a relief, but what was the nodule that they found on x-ray?
    Plaquenil and prednisone were helping dramatically with hair loss, mouth ulcers, and a little with the fatigue. Now my prednisone is being tapered and pain, hair loss, and fatigue are returning. My rheumy wants to continue with the taper....which I understand. I told my GP that it seems like I'm not being taken as seriously as I feel. He actually stated "Physicians become desensitized to certain things when they are not extreme". As a nurse I kind of get that...I worked in pediatrics for a while and I had patients that were extreme, so when my own kids have a cut or some other normal injury I feel like they are exaggerating-and that is not the case at all.
    After this conversation I said I want someone to pay attention and help me before I am dieing!!! Do I have to be in the ICU before someone notices that something is VERY wrong.
    I said that all patients deserve individualized care-and that is what I want! I want and deserve a team of specialists to work with me-we all do!!!!
    I used to be so proud to be an RN, but I am embarrassed at how healthcare is now, and how the patients care is no longer the primary concern.
    Thank you for the D vit advise. I completely forgot to pick them up the other day- my level was 34.
    Again....Thank you for taking your time to read a part of my story and add helpful information. It is truly appreciated :)

[elbamom]

Dear Healing hands:
Have any of the docs tested you for an immune deficiency? There are 185 different kinds and maybe you are dealing with one of them. For example CVID (common variable immune deficiency) can happen at any time.

Since you are a nurse you should find the IDF (immune deficiency foundation) a helpful website to rule out any immune deficiency.

Go to www.primaryimmune.org for lots of info. They have publications that can suggest tests for your doc to order. They also have a list of immunologists in your area that are familiar with immune deficiencies.

Have you had a vitamin panel run? If you're not taking vitamin D3 I would start. It will help your immune system while you look for answers.  Lots more info on that at www.vitamindcouncil.org. D3 is cheap and easy to get at big box stores. Costco, Walmart etc. Start at 5,000 IU a day and check your blood twice a year to reach the "optimal level" of between 50 and 70ml.

Hope this info helps and many people here have great ideas too!
Hang in there!
Elbamom