View Full Version : Seeking support and direction - please help

10-23-2006, 06:09 AM
Hello everyone. I'm new here and I am totally lost. I apologize if this is supposed to go on the new members page, but it doesn't seem to get much traffic and I am so panicked at this point that I really hope you don't mind me posting here.

I'm 32 years old and I have 4 children - the oldest is 7. Normally, I am a high-spirited, energetic do-it-all supermom. Lately, though, I am feeling like I am losing all of me. :cry: After each of my children, I nursed them and felt fine but as soon as I started to wean them, I suffered with joint pain, exhaustive fatigue, come-and-go redness on my chest and face, and hair loss. I've been tested several times and always come up with a barely positive ANA test. Then, I'd get pregnant again and be fine. This time around, I am done having children so, we can't avoid the symptoms with another pregnancy.

Since June, I've been experiencing numbness in my fingers and toes, joint and, now, muscle pain, fatigue, redness in my face, chest pain, falling/dropping things, difficulty retrieving words, fogginess in my thoughts (I messed up our finances which NEVER has happened before). The pain and fatigue comes and goes but on some days is unbearable. Today is one of those days. Everything hurts. I don't think a 32 year old should struggle to lift a pitcher of juice or walk up the stairs.... I have 4 children I need to care for....

My primary doctor thinks I have SLE but is just in the gradual onset phase. I just started seeing a rheumatologist one month ago. He does not think it's lupus. He said that my thyroid is "generous" whatever that means. I got a call from the nurse who said that my sed rate is fine, no protein in urine, chest xray was fine, RA is always negative, ANA is barely positive (they don't even count it as abnormal). They are running more specific tests for thyroid or lupus but I doubt they'll come back postitive. But what the heck is wrong with me?!?!

I have another appt. this week and frankly, I'm thinking about not going. I can't stand to sit there and have them tell me the tests are all fine when my life with my children feels like its slipping away every day. :cry: :cry:

Someone please give me some direction......


4hugs - named so because no matter what I lose in this, what I cannot do with my children, I will always have the arms of 4 hugs here and I need to stay focused on that.

10-23-2006, 06:42 AM
Hi 4hugs,
I just read your post. I feel for you big time. I have SLE and have had it for years, or most of my life, however, I did not get diagnosed until I was 36 years old. When I finally got diagnosed it had been after years and years of symptoms. My illness got worse gradually. I also have Dishydrotic Eczema on my hands and feet and for years the doctors would be side tracted by the Eczema and would not even test me for Lupus. Unfortunately, I got disgusted and refused to go back to a doctor. This turned out to be a huge mistake that nearly costed me my life. I ended up with horrible problems when I was 36 years old that forced me to see another doctor. I had ended up getting Myocarditis, Costal Chondritis, Pleuresy, Malar rash on my cheeks, my fingers looked like sausages, I can not even tell you all the things that were happening with me. When I finally got the attention of a GP that tested me for Lupus and sent me to a Rheumatologist for the first time at 36 years old, I was in a very bad way for sure. I could have died instantly at any time. I guess what I am saying to you is that you should absolutely keep your appointment. Do not give up on the doctors. Lupus is really hard to diagnose sometimes. You have to hang in there and tell them right out that you are having these problems. Make a list of all of your symptoms and take them to the doctor. I know that they diagnosed me when the ANA test was pos, sed rate was seriously elevated, CPK elevated and a bunch of other tests that I can not remember indicated Lupus. SLE is a life long illness with no cure and a lot of doctors want to make darn sure that this what is going on before they will dx Lupus. There are several illnesses that will act like Lupus and not be Lupus. All I can tell you is to keep seeing the doctor and don't give up. I hope that you find out what the problem is soon. Hugs, Kathleen

10-23-2006, 08:03 AM
I wish I could reach out to you physically and give you a hug - I know you are frightened and stressed right now. I also have a quartet (all boys)so I know how hard it is when you feel like your life is spinning out of control but you have to hang on for your children.

Many of the symptoms you are describing sound like lupus, but part of the reason lupus is so hard to diagnose is that it can look like so many other diseases, so it's called the great imitator. Symptoms like joint pain, fatigue and hair loss are common in many conditions, not just lupus, so they are not part of the criteria for lupus diagnosis. Lupus can cause skin lesions, extreme sensitivity to sun, and a specific type of rash called a malar rash, also know as a butterfly rash because of its shape. The malar rash can range from a slight flush to a bright red rash. The malar rash is a specific diagnostic symptom for lupus, so it's an important clue, but there are many things that can cause a facial rash or redness, so it's sometimes hard to tell for sure. The lupus rash usually goes across the bridge of the nose and doesn't affect the folds of the nose.

There are many auto-immune diseases and lupus-like diseases that can cause symptoms similar to lupus. A normal sed rate and negative ANA don't rule lupus out completely, but they do make it less likely.

I know you are very frustrated right now with the medical profession right now, but you do need to go ahead with your appointment. Part of the diagnosis process for any disease is ruling out the things it isn't. So every bit of information, even a negative test result, moves the process along one step further. When you go to your appointment, talk to your doctor about your frustrations. It may be necessary to refer you to a teaching or university hospital for more in-depth testing than you can get from your doctor.

Has your doctor done an MRI test to rule out to rule out MS, which can often present with symptoms similar to lupus?

In the meantime, it's important for you to take care of yourself. I know it's hard when you have children, but believe me, your kids don't love you any less if you can't be supermom any more. As long as they are loved, they don't really care if the kitchen floor isn't mopped every day or they have to eat leftovers once in a while. Do you have family or friends who can help out for a while? It's important for you to have a support network of people to call on when you're sick. If you don't have family in the area, maybe your church can help. I know it's hard to ask for help, but sometimes it's the best thing you can do. And remember there are always people here to listen and to care.

10-23-2006, 09:52 AM
The "rash" that I have, the nurse said could be rosacea, which I've never had before though. It's like a flushing of my checks and goes across the bridge of my nose. I can still cover it with makeup but people at work have said, "Oh, it must be warm in your room!" - that's what it looks like to them. It seems worse when my other symptoms are up as well. I've also had the nose/mouth ulcers (forgot to post that before).

My doctor hasn't talked about an MRI or mentioned MS, although I have thought of that especially on days like today where my fingers just are not working correctly - I have had so many typos doing this it is really frustrating.

Thank you both for your encouragement. I do not talk with anyone in my real life about any of this. I barely tell my husband the exent of the problem. I am not one to ask for help, which is why this board is necessary for me.


10-24-2006, 08:38 PM
oh man..i know i'm new here and all..but i must reply to this. i worry for you. i'm not a mother..but i have people in my life i must care for too. blood tests are not the only way to test for SLE. i had many many similar problems before i was diagnosed. i never went in to get it checked out.

in fact, i only went into the doctors when my legs started to swell up to ten times their size. i thought it was water gain....noope..my kidneys were failing. they couldn't figure it out by a blood test..everything in my system was screwed up by the time i got checked out.

i hate to say it..but if you want a definate answer..you could request that they do a kidney biopsy to check for lupus. it's painful..uncomfortable..but very worth it if you truely believe it's lupus. it could really save you if you do it. i just want to say that even though i don't know you..i love you. i send my prayers your way and hope you find your answers.

10-25-2006, 06:50 AM
A kidney biopsy is not a usual part of the diagnostic process for lupus unless the patient's symptoms indicate kidney involvement, as your symptom of extreme fluid retention did. In a person who does not have lupus nephritis or significant kidney involvement, a kidney biopsy may be negative or inconclusive. Since not all lupus patients develop kidney involvement, a biopsy is not a definite test for lupus. Since a kidney biopsy is invasive and there is a small risk of serious complications, most doctors would not recommend this procedure unless there are clear indications for it. In most cases, kidney involvement will be apparent from blood and urine tests, and a kidney biopsy is used mainly to stage the amount of kidney involvement and determine the best course of treatment, not to diagnose whether or not the person has lupus.

That is part of the problem with diagnosing lupus - it affects every patient differently, and there is no one conclusive, definite test to diagnose every single person. In some patients, kidney involvement is the first symptom of lupus - other patients never have significant kidney involvement, so a kidney biopsy might not show any clear indications of lupus. That's why it's so important to find a good doctor who will take your symptoms seriously and work with you to find the answers.

10-26-2006, 08:31 PM
Thank you all for your support. Sheena, I appreciate your touching words, I really do.

I had a horrible appointment today. All bloodwork has come back "normal" so there are no answers. I still don't even rank high enough to work with a doctor - just an LPN. Her answer today was drugs for pain and explanations for each symptom as separate problems. So, hip pain is bursitis, chest pain is costochondritis, hand weakness and arm pain is a elbow injury. Yep, they just all happen to come on at the same time, go figure! She sent me to get a wrist brace and I walked out and threw it in the trash. I'm not getting the meds filled and this will be my last appt. My last two bad "flares" - periods of worst symptoms- were both during minor colds as if my immune system is certainly involved. But hey, let's just call it a group of collective, spontaneous injuries and give you drugs with no explanation....I hate the medical field.

10-27-2006, 04:38 AM
Hi 4hugs,
I hear where you are coming from. I am serious. I have SLE and for years the doctors would dismiss me and not even test me for Lupus. I would ask them to test me, because I had a lot of things going on with my joints, severe headaches, bad sun sensitivity and things like that. They would see the Eczema on my hands and decide that that was the culprit and dismiss me completely. One time when I was in my 20's they did the blood work and the ANA was neg, but the SED was elevated and I had severe Leukopenia. They claimed that I had a virus. They sent me on my way. Things like that kept happening to me until I was 36 when I had the most serious flare occur and then they did the ANA and it was pos with a speckle pattern, also that was the first ime I had the Malar rash on my face. They also dx Sjogrens, becuase that was causing me serious problems too. I had Myocarditis along with it. I guess what I am trying to say is that sometimes Lupus takes a very long time to fully present itself. I think that you should have kept the wrist brace, because they do help with the pain. I hope that you can get some answers. Do not do what I did. Do not give up on the doctors, because you could find yourself in the same situation I was in, which was not good. Find another doctor if you must, but please do not give up on the doctors. It took literally years for me to get dx. Hang in there. Hugs, Kathleen

10-27-2006, 05:01 AM
Thank you Kathleen. I will think more about what you said. Today, I still feel very resistant. I did not take my anti-inflam. meds last night or today and haven't dropped off the scripts they gave me yesterday. This morning I even thought that it would be most appropriate if I came here and apologized for posting because I don't feel that I belong here if I haven't been diagnosed and that nurse just shakes her head at me every time I mention Lupus (even though I've had 3 general docs all say that they think I am just undiagnosed lupus). Sigh.

Can I ask what your eczema on your hand looks like? I showed the nurse yesterday that I am starting with a new batch - I get these clusters of tiny blisters under the skin. Eventually they push the skin up and it gets itchy at which point I usually can't stand but to remove it leaving a angry red patch until it heals. There might be 40-50 little blisters in each cluster and it goes on my palms and down the side of my hand (by my pinky). Is this like what you get?


10-27-2006, 07:31 AM
That many "itis"es in someone your age adds up to an inflammtory process going on somewhere - the doctors just may not have done the right lab tests to find it. Please do not give up on the medical profession yet - this just hurts you and doesn't bother them one little bit.

It sounded like the primary care doctor you saw before the rheumie was at least sympathetic - I would suggest returning to him, and asking him to refer you to a teaching hospital or clinic - explain that this is disrupting your life and you need to be back in control for your kids. I have four kids myself, all boys, so I know how stressful that can be, even without the added burden of illness. Go ahead and take your anti-inflammatory meds - they will help some of the symptoms and help you manage with the kids.

10-27-2006, 08:06 AM
Hi 4hugs to me that sounds like Dishydrotic Eczema. They form little blisters in cluster end up itching so bad that you tear them open and then they turn into ulcer sores on the palms of the hands and feet. I don't know if you get it on your feet, but you can. Sometimes you can get them on the palms of your hands and not your feet or the other way around. I get them on both my hands and feet. When the sores heal they do not leave permanent scars. The excema in itself, this type, leads one to believe that there is an Autoimmune problem going on. I have put into a post in here on what I have found out about Eczema, you know the type that I have. Let me go find that and I will put it in here for you to view ok.

Dyshidrotic eczema is a type of eczema (dermatitis) of an unknown cause that is characterized by a pruritic vesicular eruption on the fingers, palms, and soles. The condition affects teenagers and adults and may be acute, recurrent, or chronic. A more appropriate term for this vesicular eruption is pompholyx, which means bubble. The clinical course of pompholyx can range from self-limited to chronic, severe, or debilitating. The condition's unresponsiveness to treatment can be frustrating for the patient and physician.
Physical: Physical examination performed early in the course of the flare reveals small (ie, 1-2 mm), clear, deep-seated vesicles without erythema erupting on the lateral aspects of fingers, the central palm, and plantar surfaces. The vesicles have been described as resembling tapioca pudding. Eruptions are usually bilateral and symmetric. Patients treated later in the course of this disorder may have unroofed vesicles with inflamed bases, possibly accompanied by peeling or rings of scale or lichenification. Transverse furrows can develop on the nail when eruptions occur in the periungual area and/or nail matrix.

Basically all that I could find out about this eczema is that mine is due to a faulty immune system. This is what my Rheumatologist told me. I think he said something about the inflammation and antibodies that are associated with the Lupus causes this to happen to me. My doctor put me on Imuran to decrease the severety of the flares from the Eczema. I also found that because I am very sunsensitive that the sun will cause the Eczema to break out worse too. I hope that my post here is not to confusing, but lupus itself isvery confusing and hard to deal with. Hugs, Kathleen

10-29-2006, 03:06 PM
HI sounds to me like you've got the early onset of lupus.

I had all that before my dx. I was having all the signals of lupus like fatigue, fever, chest pain, joint pain, muscle stiffness, ect.... But also I had the fact taht my fingers and hands even my legs would feel jelloy.

I found I coudn't pick up a pitcher of water or sometimes I'd pick up a plate and it would just fall out of my hands so plastic it was for me after. My legs would feel so weak and they would give out. My fingers and toes would be numb too. I hear this isn't to common in lupus.

So I also had my ANA first negitive then it was barely positive they suspected lupus for quite a few years then finally it progressed and my ANA was very positive.

So don't give up keep on keeping on and keep pressing the doctor to do more tests and such because that's the only way to get an answer.

But you're not alone I was there too my RA was even negitive at first.

take care nad I wish I could come over there and give you a big hug!!!!!!!!!!!!!!!!!!!!!!1

11-05-2006, 07:44 AM
Thank you all so much for your answers. I have not checked back in for about a week because I was adjusting to my nurse's last call. Keep in mind that, at the office I must go to due to insurance, I can only see a LPN until she grants me the permission to go on to a doctor. I hate this nurse. I was actually posting a reply to Kathleen last week saying, "Yes! That is EXACTLY the perfect description for the eczema I have on my hands and, yes, it is also on my feet!" It feels so good to find people who have the same "weird" things that I have been experiencing all alone.

Well, in the middle of typing, my stupid nurse called and said that my labs were negative (except they are still waiting for a Lyme titer and they refuse to look at my "barely positive ANA" as such) and that she talked with the doctor and they don't feel it is systemic. Instead, I am supposed to accept that, simulataneously (and only after each of my pregnancies) I have contracted the following: rosacea, eczema, bursitis in my hip, costochondriasis, and epichondriasis, and possible a pinched nerve in my neck. All at the same time and coincidentally, they all get about 10 times worse if I contract a cold.

I am so fed up. I told her that I was frustrated with her inability to see the forest for the trees and that I would not be returning, please cancel my appt. I also discontinued my Relafen and got rid of my scripts that she gave me for a different anti-inflam. and darvocet. I also dumped the wrist and elbow braces/splints. For the past week and half, I have been living, unmedicated, in complete denial. It's driving me insane. I have many of the experiences Stephanie described. This morning I reached into the cabinet above our stove and couldn't get a grasp on my recipe box and instead knocked a bottle of bubbles onto the stove where scambled eggs were cooking. My 7 yr old said, "Oh great! We're having bubbles in our eggs today!" I'm always dropping things and I noticed that I am having more trouble either not feeling my feet as much or with them feeling super-tingling, like they are asleep but it's when Im walking and really noticeable if I'm running. I also have this foogy brain thing going on with difficulties retrieving words - very unusual for me.

But, it's not systemic.....I feel like a hypochodriac. Thanks for listening.


11-05-2006, 08:30 AM
4Hugs is their any way that you can see a different doctor. I know you said that you have to go where your insurance will pay. I found that I had to go to a doctor and pay it all out of my pocket before I could get diagnosed. I know this is not fair at all. I could very well have died before I got dx. I don't want you to go through the same thing that I went through. The Dishydrotic Eczema can definitely be caused from the faulty immune system and inflammation. This is what I found out from my doctor, a Rheumatologist, and the internet. I feel really bad for you and boy do I understand how you feel. Where do you live at if you don't mind me asking? I am in Southern GA. I will pray for you and hope that you can get the answers as to what is going on with you.
Hugs, Kathleen

11-05-2006, 11:23 AM
Thank you Kathleen. I am in WI. I'm sure the docs at this hospital are very good; however, since I cannot access them, it doesn't really matter. I appreciate all your advice and support. Today, I had to cancel shopping and rearrange my husband's day simply because I am so fatigued, achey, and foggy. I hate the fogginess - what causes that?!? I put the wrong words in sentences and my thinking is just generally sluggish. Anyways, we cannot afford to pay out of pocket.....maybe, I should check into it a bit more though....I think we only have to pay 20% out of pocket but with 4 kids thats still alot...

I really do appreciate all the cyber hugs and support. In real life, I am a tremendously stubborn, do-it-all type of person who never admits weakness and never, never asks for help. Here, annonymously is the only place that I truly express my frustration and extent of my symptoms (although I did actually cry when discussing everything with that nurse, but then, what good did that do?!?!)


11-05-2006, 11:39 AM
Hi 4hugs,

I can understand the independant thing. I too am fiercely independant and downright stubborn. I got to the point where I flat out refused to see a doctor. I mean, I had become so disappointed and they would not listen to me. They would get sidetracked by the Eczema and decide that that was the culprit and would not even test me for Lupus and would tell me that I was worrying needlessly. It was totally unreal. To make a long story short my swearing off doctors and ignoring my symptoms nearly costed me my life 12 years ago. You have a right to medical care and to be listened to and not dismissed. I would make another appoointment immediately and demand to see the doctor and not a darned LPN. I mean you are paying a copay right. You could also ask for a referrel to a Rheumatologist. Another thought that you may consider is to contact your insurance agent and let them know that you are not getting adequate treatment and see if there is another doctor in your area that can see you. My husband had to get a different doctor as we have to see who our Tricare Provider tells us that we have to see. The doctor my husband was seeing sounds a lot like that nurse that you saw. He is a lot happier with the doctor that he sees now as he has gout etc. Let us know here how it goes. Please do not give up on the medical community as there are a lot of good doctors out there. I feel really bad for you and do know how you feel. Nobody should have to walk around sick as crap.

The brain fog is common with Lupus. Your brain can become inflamed just like any other part of your body. I get this too, but the medications seems to help some.


11-05-2006, 11:43 AM
Hello 4hugs!

I'm so sorry for the tough time you are having. Raising children and running a household is never easy, but it seems impossible when your body is on strike and you don't know why! I was just diagnosed 6 months ago, so I have fresh memories of how frustrating it can be.
It was interesting for me to read about how you felt better during pregnancy and nursing, but had symptoms after weaning your children. I experienced that, as well. I had two kids where that happened and wondered if hormonal changes caused the difference in how I felt. Now I'm pregnant with #3 (the first after my diagnosis) and am feeling better than I have in a long time.
I will pray that you can find a doctor that will take you seriously and order every test under the sun to figure out what is going on. But your symptoms sound very much like mine. Don't give up on all doctors. I've learned that for every dozen I see, maybe one will be the kind, sympathetic doctor I'm looking for. But remember, all you need is one doctor. Take care of your children the best you can and remember that all you can do is your best. Try not to over do it. Take care, my friend.

11-05-2006, 02:36 PM
As always, Kathleen, you are a great source of support. I will think seriously about what you posted.

Angie, thank you for taking the time to post. It is always so relieving to find someone who has felt the same. I felt great during my pregnancies and pretty good while nursing, but right when I started to "nurse less" (not even completely wean) the same symptoms kick in. The nurse dismissed lupus partially for this reason saying people with lupus are worst when pregnant and better afterward (what?!?!). Thank you for validating my experience. I too have wondered if it is all "just hormones" and my dumb nurse actually brought a doctor in once to tell me that my chest pain when breathing was probably due to breast pain (after 10 months of bf-ing!) Duh.


11-05-2006, 03:38 PM
From what I've read and what doctors have told me, women either get better or worse during pregnancy. Every woman is different. At least you had a few short periods of better health!

11-05-2006, 05:30 PM
I think that you can insist on seeing an actual doctor instead of a nurse. If you do have a sympathetic general practioner, you may be able to talk to him/her about getting you a referal and having the GP doc insist that you see the actual doctor. Then when you make the appointment, be sure they are aware that the GP wanted you to see the doctor not the nurse. No matter what, it is important that you do whatever you need to do to take care of you. There are 4 really good resons for that. And, nope the medical community is not going to notice or care if you just drop out of sight. Good luck with your continuing quest for answers.

11-05-2006, 06:34 PM
Hi, 4hugs. I think you need to write a letter to this doctor about his office practices. If this nurse is an LPN, she is not legally authorized to see patients unless she is being directly supervised by the doctor and she is certainly not qualified or legally authorized to act as a gatekeeper, so this doctor may be risking sanctions or worse.

If your insurance is provided through your employer, getting your insurance benefits manager involved might help because they can put pressure on the insurance company to let you see another doctor. Most insurance companies have a list of participating providers - you can get this directly from the insurer by calling the number on your insurance card. You also need to let the insurer know about this doctor's practices, because they can certainly threaten to drop him from their approved provider's list. Call the insurer, ask for a supervisor or an ombudsman, explain your situation and ask what options you have about switching doctors. Be calm but assertive, and keep pushing for answers!

11-06-2006, 03:51 PM
I'm 46 years old and have battled this stuff since I was in my 20's. I've only been diagnosed for a couple years! They treated me symptomatically for ever. It's a very frustrating disease. My labs played hide and seek. I had a barely there ANA, then a positive RF, then no ANA and no RF. Now I have an Anti-chromatin through the roof. I even stopped going to doctors out of frustration. But if you have slow moving disease and it isn't attacking your major organs, then it will take even longer for them to figure out if you don't continue to bug them. It's exhausting and expensive. But we have no alternative.

11-06-2006, 08:24 PM
The nurse said to me, "I don't want you to ruminate about Lupus." My husband says "Why do you have to have a name for it?" You all understand, right? I need to know that on the days when I can barely move or am having chest pain and heart palpitations that I have an explanation and that, in time, it will ease up. I cant accept weakness and dependency but I absolutely cannot accept dependency without explanation.

Just really tired today and feeling like a horrible mom for not keeping up with my kids and having no "reason" why not to.


11-07-2006, 07:17 AM
Hon, you have nothing to feel guilty about - you are certainly not a horrible mom. and you are trying as hard as you can - your body just isn't cooperating.

I know the insurance puts you in a bind, but I don't think this doctor is open-minded enough to work with to find your answers. I would suggest going back to the doctor who took care of you during your last pregnancy, explaining the pattern of your symptoms post-pregnancy, and asking for a referral to either an endocrinologist, or a major clinic or teaching hospital. The pattern of your illness remitting during pregnancy, and recurring post-pregnancy, suggests maybe there is a hormonal or endocrine problem, so this needs to be checked out. I know it's hard to fight back against the system when you're so tired you can't think straight, but you have to try, not just for yourself but for your kids.

I think all of us understand how frustrating it is when you can't get the medical profession to take your symptoms seriously. But letting your frustration drive you away from doctors just hurts you, not them. So you have to keep pushing for answers and don't give up.

11-07-2006, 09:08 AM
I can certainly sympathize, though I got dx'd fairly quickly. Of course, at first they looked at all the symptoms and tried to dx through them. Impossible because lupus does so many things to so many body parts. It finally had the malar rash which made a light bulb go off in my original doctor's head...and this was years ago. My initial tests were barely ANA positive, but it was enough to get me diagnosed, thank God. It IS better to have a name to put to it, rather than just saying "I don't feel well today because of ________________" Since then, when I've seen different doctors, they said different things according to my blood tests (which always turn up wierd....after I've taken prednisone, they look practically normal) BUT what I feel and what I am going through are NOT normal, and when I had to explain what I was feeling, I began going from head to toe: hair loss, foggy brain, nose/mouth sores, rash on face, extreme sensitivity to sun, pericarditis, pleurisy, IBS, extreme joint pain, and just a feeling of unwellness...like the flu before you get symptoms. since I already had the dx, they didn't argue anymore. You have to get REAL aggressive sometimes. YOU know your body better than THEY ever will. Fight for it!
Nurse Ratchet needs to go. If you can at all afford to do so, go see a doctor outside your network and pay the price. Ask beforehand what they know/what their experience is with Lupus. Some doctors know TONS about it. That's the one you want to see, even if you pay for it out of your own pocket (I know it's not fair, but what is?) Tell him EVERYTHING. In my experience, once you get a positive dx, the other doctors respect it.
God bless you and keep you and yours. You ARE a great mom...and the best way to continue to be one is to take care of their mother. Love, Kathy