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Posted By : Raine.J - 1/31/2012 2:56 AM
Hello all! I'm new here. Just wanted to give a short version of my story and get some input. I am a 35 year old mother of 5 boys (yes 5!) I also work as a full time nurse, well for now I am on FMLA. Let me start with my symptoms which have been going on for about the past 10 years.

Chronic fatigue
Pain in hips.knees,ankles,wrists, fingers, and bottom of feet
Muscle cramps in legs and feet
Strange rash to both lower legs that come and go
Swelling every night in both my legs
Chronic sore throats
Sores in mouth, throat, and nose
Sore/swollen lymph nodes behind ears, down neck, under right arm, and groin/pubic area
Low grad fevers
Hair loss
Butterfly rash across face (not really a "rash" it's a flush that is hot to touch) on chest too comes and goes
High Blood Pressure
Nephritis, kidney pain, hematuria- often
Kidney stones- often
Kidney infections- often
Feeling very "flu like" very ill, like someone has sucked my life force out (for 3 months now)
Neck and back pain
"Foggy head" very forgetful and can not concentrate at all
Severe pneumonia 2 years ago
Very susceptible to chest colds since then.

Being a nurse this list screams Lupus to me. However my ANA was negative. Today at my Drs appt he diagnosis me with Pernicious Anemia and says I have to come in every week for a shot in the butt. No problem, makes since my Vit B12 is very low. I asked about the other issues I'm having like with my kidneys, pain, rashes, hair loss, and all the other symptoms I've had forever. He tries to ignore me so I have to flat out ask if his diagnosis of Pernicious Anemia could explain all my other symptoms and he reluctantly said no and refused to sign my fmla letter. I asked for a referral to see a Rheumatologist and he reluctantly gave me one. This is a little ridiculous.smhair I may have PA but that did not cause all the other symptoms like hair loss, swollen lymph node, sore throats, sores in mouth, nose, and throat and the butterfly flush over my face and chest. I already have to have shots in my butt for the rest of my life. I'd like to save my kidneys and lungs before it's too late. What do you have to do to get a Lupus diagnosis! My ANA may say negative but my symptoms say positive to me! nono

Any input you have would be greatly appreciated. Im so sick of feeling like this idea

Posted By : Butterflake - 1/31/2012 1:39 PM
Welcome to our forum Raine. I'm sorry you're getting the run around. It took me two years to get diagnosed and I was on FMLA for 3 months during this two years (my psychiatrist who I had been seeing for a few years signed off on FMLA). If you go to and click on about Lupus, symptoms you will see which symptoms can help diagnose lupus and which don't. Also be sure to look at the second Admin on the top of our page. Lots of common sense info and links. Be sure to take your list of symptoms to your rheumy. I hope your insurance lets you get a second opinion if your first rheumy doesn't help you. BTW my PC prescribed Celebrex to help me with the pain. I've been with my second rheumy for years. He first diagnosed me with fibromyalgia which I didn't agree with, but he gave me treatment and that's what counts. He also kept testing me for lupus and not long after my blood tests were indicative of lupus. He diagnosed me in 2005. I have a bachelor's in medical technology I for quite some time I kept struggling to work. For just I enjoyed working, but when I was just too sick my rheumy was happy to sign my disability papers. He knew how hard I tried.
I'm sending you lots of positive engery and sincerely hope you get some relief soon. Love, Butterflake  

Posted By : couchtater - 1/31/2012 5:48 PM
A PCP can't really diagnose Lupus. If all else fails got to a different PCP and get them to refer you to a rhuemy. Some doctors are stubborn about their diagnosis and don't like to be second guessed.

Posted By : Raine.J - 1/31/2012 11:53 PM
Thanks for the welcome! There is some great information on this site, love it =) My appointment with the rheumatologist isn't until March 21st so next week I am going in to see my Urologist. Maybe he can help with the fmla paperwork. How do you go back to work full time when you don't even have the energy to get out of bed?? I'm going to talk to my boss about cutting back on my hours, even though she has told me in the past she is not going to work with me unless I get a diagnosis in writing from a doctor (**sigh**). If that's the case I might have to just switch departments (units). This situation is just soooooo frustrating! It helps to come here though and read the posts. Helps remind me I'm not the only one dealing with this.

Posted By : mscrowbar - 2/1/2012 11:55 AM
Are you taking Iron? I ask because I was also diagnosed with having low b-12 and pernicious anemia. But, I had 3 doctors argue that point. Finally I was diagnosed with iron deficiency, not pernicious anemia. And I still have low b-12. Not everyone with low b-12 has pernicious anemia and not everyone with low iron has low b-12. They are actually two different things. Now, I get the shot for the b-12 and take mega doses of iron for the deficiency.

So, I would make sure it is pernicious anemia, which only requires the b-12 shot, not iron deficiency, which requires iron supplements. From what I understand, some doctors do not know how to read the blood work and if the b-12 is low, automatically assume the pernicious anemia.

I hope, with you being a nurse, that I am not telling you something that you may already know. But, I guess with the doctor issue I had, I thought maybe I should say so anyway.

Hope you get some answers, and relief from your symptoms soon, take care,

forum moderator/RA

Rheumatoid arthritis, Fibromyalgia, meniscus tears in left knee, Cancer survivor

Posted By : couchtater - 2/1/2012 5:24 PM
Do you have a high MCV score on your bloodwork?
My doctor told me if the MCV is high it's a sign of low B12 or low Folic acid.

Posted By : Raine.J - 2/1/2012 11:30 PM
No, just low Vit B12 and Vit D. I meet with a Nurse Practitioner today who is going to do a more thorough workup and see if she can get me in to see the Rheumatologist sooner. smilewinkgrin

Posted By : CNN - 10/3/2012 1:44 AM
Wow, Raine... That sounds very familiar to me. I'm 34 and have been told my iron reserves are very low, so iron deficiency, different from regular anemia but he suggested possibly pernicious anemia. Now told B12 is low and taking shots. Also found that my creatinine levels were high, so it seems my kidneys are "slowing down." I have always suspected lupus/MS as autoimmune diseases run in my family, and I had symptoms of MS years ago that the dr blew off.

I'm waiting till next week when my dr is back to discuss the ultrasound of my kidneys and blood tests. So far 2 of 4 B12 shots taken and blood tests every week to see if the B12 is absorbing. What initially brought me in is fatigue for over 1 year. I had been the dr before about fatigue and constant low grade fevers, but was always blown off as stress.
From your symptoms, here are the similarities:

Chronic fatigue - YES
Pain in hips.knees,ankles,wrists, fingers, and bottom of feet - Hips, knees, shoulders and elbows
Muscle cramps in legs and feet - YES especially in the feet
Strange rash to both lower legs that come and go - YES, but also on my arms and thighs, looks like a light blotchy leopard spot, comes with stress, then my psoriasis acts up
Swelling every night in both my legs - NO
Chronic sore throats - YES
Sores in mouth, throat, and nose - Throat
Sore/swollen lymph nodes behind ears, down neck, under right arm, and groin/pubic area - Occasionally
Low grad fevers - YES
Headaches - Occasionally
Hair loss - No
Butterfly rash across face (not really a "rash" it's a flush that is hot to touch) on chest too comes and goes - occasionally
Anxiety - yes
Palpitations - no
Insomnia - no
High Blood Pressure - no, low
Nephritis, kidney pain, hematuria- often - no
Kidney stones- often - no
Kidney infections- often - no
Feeling very "flu like" very ill, like someone has sucked my life force out (for 3 months now) - no
Neck and back pain - YES - go to the chiropractor every 2 weeks
"Foggy head" very forgetful and can not concentrate at all - YES, YES, YES
Severe pneumonia 2 years ago - I had Mono when I was 15 and treated incorrectly with antibiotics, problems since then
Very susceptible to chest colds since then - yes

Seems there are a lot of similarities, but maybe get checked for lymphoma with the swollen lymph nodes.
Good luck. Just wanted you to know you're not alone in this

Posted By : Joanimal - 11/15/2012 7:43 PM
Have you ever heard of neutropenia, or cyclic neutropenia?
It does cause mouth sores, its low WBC count, will make you susceptible to getting sick- fevers.
I also have had a problem with kidney stones,
It could be worth getting tested for, if it is sever enough they can provide you medications

Posted By : Blu84 - 1/9/2017 10:00 PM
Sorry...see this is from 2012, but wanted anyone else to be aware to ask, and ask again (took me 3 times after I googled for days when my mom died from leukemia) for the intrinsic factor antibody test to verify pernicious anemia. I was diagnosed in 2007 after my Dr refused twice swearing it was celiac disease. She agreed to do both and negative for her DX. Was diagnosed unofficially with new FAM practitioner when I went in for upper respiratory in 2013 based on butterfly rash but Ana tests were negative until an unrelated hospital stay. 6 of 7 Ana tests negative and finally got lupus DX. Had to be persistent with internist to answer a yes or no question. Not sure why they make it so hard.

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