View Full Version : New to this...please help me?!? (sorry it's really long)

11-20-2008, 07:02 PM
My name is Amanda, and I am 22 years old. I was diagnosed with lupus (and a possibilty of fibromyalgia) at age 18. I've had major problems with it since I was about 14. I also have arthritis, epilepsy, and bipolar disorder.

I've never really known much about any of this except the epilepsy because it's really important to keep seizures under control. I was also in denial about the lupus for a very long time.

I think I'm having a really bad flare from the lupus right now. I don't have a rheumatologist, nor have I ever seen one. My GP (who i've seen since I was 6) diagnosed me and has treated me off and on. I don't have health insurance, so it's very difficult for me to afford the medications and doctor visits.

In the past I have taken plaquenil and steroids for the lupus, but when I couldn't afford them any more, I quit taking them. I want to get back on the medication because it made me feel better.

I am now having major issues with pain...as always. I'm having joint and muscle pain everywhere...I know it's hard to believe (well maybe not for you guys, but definately for my family and sometimes dr's), but it really is all my joints and most of my muscles. My current GP is very understanding and truely tries to help me, but it's very difficult for me to go because I'm in school in another state (about 3 hours away).

I have wanted to go to a rheumatologist but I just can't afford it. I'm trying to get insurance right now, but I'm having a difficult time with it because of my pre-existing conditions.

On to my symptoms. I have the pain, of course. It's all over, and it's terrible right now. The worst it's ever been. Fatigue, pain, chronic sicknesses, confusion, dizziness, hypoglycemia, and numerous other things . And now I'm having new symptoms. I'm having a lot of trouble with abdominal and back pain. I went to the ER thinking I had appendicitis. I did not, luckily, but they did find an ovarian cyst, but said it was benign and wouldn't be causing the problems. They sent me to a non-profit hospital (bad idea). I waited there for 13 hours just to be seen by the dr, and they basically told me that I was just trying to get pain medicines. I'm having severe abd pain on my left side now. It was the right, but has since switched to the left. It is accompanied by severe back pain (mid-back) where I believe would be kidney pain. I had a urinalysis, and if found blood, high protein levels, high creatinine levels, and high albumin levels. I don't remember exact numbers thou. I've had a lot of trouble with kidney, urinary tract and bladder infections and kidney stones. This pain is so severe I can't even get up sometime, but i can't get a dr. to do anything.

Also, along with the pain, my urine output has drastically increased with a slight odor and is kinda frothy/bubbly, and i have excessive thirst. I have to be constantly drinking something or my mouth is so dry I almost can't talk. Also my eyes have been getting worse and really dry.

I also have trouble with gallstones, but can't get my gallbladder removed because of my lack of health insurance. No doctor will take it out. It's been two years since I've been to the dr for lupus stuff, but because I'm now on a break from school and I'm going back home I feel it's time to go see him again.

My question is, does anyone know what this back and abd pain (almost under my ribs on right, and a little lower on left) could be, and what should I tell my dr about my health now. Should I just completely unload all of this on him?

Sorry this is so long, but I really need some advice. I think that pretty much covers everything. Please help...

11-20-2008, 07:45 PM
Hi Adlo11,
Welcome to the site. I think that you definitely need to see a Rheumatologist. Have you tried to get medicaid? From your symptoms it sounds like you could have Lupus Nephritis and if left untreated it could be deadly. It also sounds like you have Sjogrens Syndrome going on by the dry mouth and dry eyes and thirst. You definitely do need to see a doctor, preferrebly a Rhiematologist immediately.

I think that it is sickening the way the doctor in that hospital treated you. I had a simular incident years ago and boy did I ever go off on that fool big time. I feel so bad for you and I hope and pray that there is some way that you can get in to see a Rheumatologist. I think that if you make an appointment with a Rheumatologist even if you do not have insurance they may see you and let you pay a little bit at a time until you get it paid off. I know that the Rheumatologist that I see allowed me to do that on my first visit, because I thought that he carried my insurance and he did not at that time. He started accepting the tricare insurance after he saw me for the first time. He let me pay like 50 dollars a week until I done got him paid off and then he started accepting my insurance. Can you see if they will let you do that and also please do try to get medicaid if you can.

There will be others that come on here with really good information and they may know more of how to help you financially so that you can get the medical care that you so desperately need. Please keep posting.


11-20-2008, 08:16 PM
Thanks for replying...it's nice to have someone to talk to about all of this.

i've tried to get medicaid and disability 6 times, and each time they've turned me down, but I don't know why. they just told me I didn't have enough "points" to qualify. The health care system in this country sucks so bad. i just want someone to tell me what's wrong with me and how to fix it. that's all i'm asking, but no one really wants to help because i don't have money.

I'm going to the doctor on monday, so hopefully he can help me.

thanks again for talking to me.

11-20-2008, 08:34 PM
Hi Adlo11,
I am wondering why they told you that you need points to get SSI. I know that you do if you are going for SSDI, but you should not for SSI. I think you need to talk with Rob about this as he is getting disability and maybe he can some how help you. I will pm him and see if he will talk to you. He is one of the moderators in here and he is great. He is awsome and you will like him. Let me contact him by pm ok.


11-20-2008, 08:39 PM
I just sent Rob a pm and he should get it and talk with you and we can see what can be done to help you ok.


sick n tired
11-20-2008, 08:59 PM
Hey adl011,

Sorry to hear that you are feeling so poorly. :-(

You didn't say, do you have any fever? If you are experiencing kidney pain then you would have fever. The higher the more dangerous.
Have you been diagnosed with lupus? You might want to tell the er docs about that. Where are you in LA? MY parents used to live in Shreveport and it was positively primitive the way they handled my father when he was dying of cancer. Those hospitals are not great...the good ones have closed down for problems with funds.

It is horrid the way that that you were treated.. the next time you might want to try a tactic I used years ago with a know-it-all student doctor. When he was sending us home as nothing I asked for her name, because I wanted to know it if my daughter did have anything wrong and he didn't help. It turns out that she did and that doc is no longer working there after we got through with the hospital...btw we had to wait 13 hours, too for nothing.
You know what I found out? Hospitals kind of outsourse the Er doctors...or something like that. They aren't like all the other doctors and nurses who work for the hospital. All I know is I trust them as far as I can pitch them.

I do hope that you can get some help...If you have a high fever and still have that pain, you might want to take a stab at the hospital..

11-20-2008, 10:07 PM
Hi Amanda...

Welcoming you with a tight hug...

From my understanding...There are very few signs or symptoms of lupus nephritis.
It does not cause pain in the abdomen or back.

However, when protein leaks from the kidneys, it is eliminated from the body in the urine....Foamy, frothy urine and getting up to urinate during the night can suggest excessive protein loss.

The loss of protein in the urine from lupus nephritis may then lead to fluid retention with weight gain and swelling (edema). This is often the first symptom noticed of lupus nephritis....

The edema generally appears as puffiness in the feet, ankles and legs. This swelling will be absent in the morning, but will gradually worsen as the person walks about during the day.

Perhaps the abdominal pain maybe from pancreatitis, gall bladder, stomach...it is really hard to say. All we can do is suggest, guess.

Regarding you financial situation. If your doctor charges you, ask her if she would charge you the same rate as they would charge an insurance company. It is considerably less and ask to make payments. And do tell them of your financial situation.

Also ask her for samples of the drugs she is prescribing. Most offices carry them. If so, she should be able to give you 14 to 30 days of free samples. They get them free from the sales representative to peddle their drugs via prescription.

I don't understand the doctors, they will run the labwork...they come back positive, high range yet they will not provide medicine or care. Insane. And to have pre-existing condition and not provide medicare...insane too. That is a frustrating position to be in.

This doctor you are seeing on Monday, ensure you bring a copy of all your tests. If you do not have them, contact the medical facility, ER, doctor or and request a copy.

Anytime you have lab work done and the doctors call you, tell them to send the results to you.

You mentioned you were attending school...I am not sure of legitamcy of these health insurers but check it out...


Walmart has a $4.00 program fro OTC and prescription drugs. http://www.walmart.com/catalog/catalog.gsp?cat=546834

Also Walgreens... https://webapp.walgreens.com/MYWCARDWeb/servlet/walgreens.wcard.proxy.WCardInternetProxy/RxSavingsRH?

Also some local grocers, pharmacy give free antibiotics with a prescription in the event you have an infection. Insure they are not sulfa antibiotics as they have the potential to incite a flare.

Also, you didn't mention your parents. Some health insurance companies cover a family's children as long as they are attending school and 25 years old or younger..ask your parents, if they have insurance.

I hope this helps. If your provide your city or college maybe there i smore information we can look up. If you rather not share, which is alright..do a google.


sick n tired
11-20-2008, 10:16 PM
wow Oluwa :shock: ...you sure are a wealth of information.

12-22-2008, 03:55 PM
Well, I've been to the doctor three times now since I've been on here last. School has been crazy. The dr said I don't have lupus nephritis, but they think I might have MS or neuro-lupus issues now. I'm scheduled for an MRI in January and I was put on Plaquenil 200mg twice a day on the first visit, and now added Neurontin for the nerve issues. I also have pain medicine I can take and some anti-biotics and a steroid (12 days). I took your advice and checked for the health insurance through the school. It's not too bad. It has $100 deductible, but they say they don't cover pre-existing conditions, so I'm not really sure if it will help. After the deductible they cover all my dr visits and 80% of hospital stuff.

Thanks for all the help and advice guys. I appreciate it.

12-25-2008, 12:22 PM
I would suggest having your parathyroid checked and your adrenal glands. The low blood sugar could be coming from the adrenal glands and the kidney stones are very often seen in hyperparathyroidism. The parathyroid is one of the most common things to go wrong with a woman yet doctors rarely if ever check it. They will always check the thyroid, but never the parathyroid. If you can, look back over old blood work and see if you have elevated calcium levels. Hyperparatyroidism can cause a huge list of symptoms including fatigue, hair loss, nausea, and extensive achy pain.