[mills72]

Hi, I'm hoping someone could help me out, my mom is 54 and just recently out of the hospital for infection in her kidneys. 2 days ago she started to get a rash on her hands and feet and it's hurting, burning, itching, and swelling. So I get on the computer in hopes to find something to help her and came across Lupus.

What my question to you now is this, she has the butterfly rash (has had it for about 9, 10 years now, that we thought could be rosasia) that comes and goes and has for the past year stayed more ofen, she has severe fatigue (so bad that she told me and my sister that her mind wasn't tired but her body was so tired she wished she could die already) unexplained fevers, muscle pain, weakness, chest pain, hair loss for some time, severe headaches, and so on..... could this be Lupus and we didn't even realize it?

She's been this way for about 10 years now all the symptoms, and just recently in the past year gotten so out of control. Her recent hospital stay was for 5 days, she had sepsis (don't know if that's spelled right, sorry if it isn't) from a kidney stone trying to pass that led to a UTI and kidney infection.
In the hospital they found water surrounding her heart, and she had that butterfly rash that was tender to touch and have water touch it, the doctor looked at it and said it was like acne (We know what pimples look like).

We come from a very small town that don't have very many Lupus patients that I know of, but my mom's cousin daughter has it. The fatigue is what scares me the most, she cries all the time and says that she don't understand why she does it. She says she's so tired she can't do anything. She can't even go to the store.

My mom doesn't have any insurance she was working until last May when she injured her knee and and to have surgery ( which still bothers her real bad) and they cut off her long term disability because she didn't get her paperwork back in time. After her hospital stay she received a bill of about 22,000 dollars and is so freaked out about going to the doctors. So if I could gather all kinds of information on this and some opinions on it, maybe I can convince her to go.

I'm so sorry if it seems like I'm rambling I'm just trying to get everything that I can remember out. If anyone can help, PLEASE respond.


Thank you,
Shawna M

 

[Katharine]

Hi Shawna,

I'm so sorry that your Mum has been so ill and for so long.

Her symptoms certainly could be indicative of lupus or another auto-immune disorder and should definitely be checked out. It is such a pity that he couldn't have had it checked out earlier as she could have obtained significant relief for those symptoms including any symptoms of depression. It is important to know that depression can be an important part of lupus and should be treated as it can really give someone thier life back.

At the top of this section you will find notices pinned about diagnostic criteria and alternative criteria for lupus.

The best thing for your Mum would be a referral to a rheumatologist who deals with lupus patients. If you're not sure about where to find one there is a "find a doctor" section on these boards.

I believe it is difficult in the US when you don't have insurance but I would still strongly urge her to see a rheumy. It is important not only for quality of life but also for life itself as it is a serious disease even if it is very rarely fatal.

I'm sure you'll get many more replies, feel free to ask questions, we're all here to help,

hugs to you and your Mum :grouphug2:
Katharine

 

[LolaLola]

Dear Shawna, It is not unusual for Lupus to go undiagnosed for a very long time. Certainly your Mum needs checking out, sometimes even the simplest treatment can make a lot of difference. It can take a few months though so the sooner she finds out the better.
I am thinking of you both.
x Lola

 

[mills72]

Thanks for Replying

I just wanted to thank you for replying, I've been up all night researching Lupus, and I think I really may be on to something as all the symptoms are adding up. I really appreciate the responds.

Shawna

 

[sadieone]

Hi Shawna,,
Katherine is right your mom needs to see a rheumatologist to be properly diagnosed.

Someone so generously shared this information with the site, and I hope it can help your mom and your family.

In lite of the fact your mom does not have any insurance,, seeing a doctor is pretty much out of the question.
Try these website,,, they may be able to help you financially and to get your mom the proper care she needs.

http://www.netwish.org/

http://www.healthwellfoundation.com/index.aspx

http://www.uneedpsi.org/CMS400Min/how/index.aspx?id=72

These sites help people afford the medical treatment that they need.
If they are not in your area i'm sure they can locate someone who is, that will help. There are also drug companies that will help her with her medication if she is not able to afford it. Ask the doctors and nurses in your area.

I'll be praying for you and your family. Prayer works wonders.

P.S. I'm a mom myself and a daughter like yourself I would be VERY proud of.


Keep in contact.


Take Care

 

[mills72]

You made my day, Thank you

Sadie,
After being up all night researching Lupus, I actually went to her doctor myself (I kinda stalked her, but didn't know what else to do) and told her what I was thinking was going on, and to my suprise she asked if I could bring my mm in just to get the proper blood tests done and I actually talked my mom into doing that. Now without seing my mom, I'm thinking she might be thinking along the lines of myself. But even if she doesn't have Lupus, her white blood count was very high and they put her on another antibiotic and also Cymbalta for depression.Her doctor told us we should know something in a few days (at least 3). So thanks forkeepingus in your prayers and for giving me some kind of direction to go in, I'll start working on that tomorrow. I'll let you know in a few days.

Shawna