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zone9a
05-25-2008, 01:02 PM
Hello all! This is my first post here so please allow me to ramble a bit and ask a bunch of questions you all may have heard before. :wink:
I am a 36 y/o woman who has been suffering with severe joint pain, lethergy, skin rashes and urinary problems w/o a diagnosis, meds or much support for over a year. My hubby and I are uninsured and were just denied state insurance even though I haven't been able to work for 2 months. I have been seen at our local free clinic where I had some preliminary blood work done...all negative...so I was told to "hang in there and come back in 6 months."
Friday morning, I woke up with my first "butterfly" rash across my nose and face. I called my clinic and was told to call back in a month if my rash continues. Needless to say, I am fustrated. Add fustration to pain, fear, and looming poverty I am a mess. I guess this leads me to my questions.
1. Is this treatment and the "wait and see" mentality normal in suspected Lupus?
2. Is an elevated SED rate needed for diagnosis in all cases?
3. Does anyone know of any privately or publically funded Lupus clinics in the western US states where I may have the chance to be seen by a Rheumetologist (sp?)?
So I guess that's about it in a nutshell. I welcome any random thoughts on this as well as thank you all for taking the time to read this and say hello.

sits_inthe_corner
05-25-2008, 02:42 PM
Awwwww hugs and welcome zone9a

Hang in there and we'll get all your questions answered. Saysusie is a font of information about local services and stuff. So hang in there I'm sure she'll be along soon.

I'm in Canada, I started on the road to find out about 1 yr and 1/2 ago and I'm still undiagnosed. So yes this is pretty typical.

I've had a butterfly rash since I was about 19 yrs of age. My mother had lupus, my sister has lupus.

I've had a few symptoms on and off over the years, but nothing solid. Turns out I had a positive and a boarderline ANA test in 2006, but I've tested negative so far this year.

In the mean time there are things you can do to take care of yourself.

I'm trying to keep a straight face as I type this, because I've been to Arizona, but ummm stay out of direct sun light :lol:

So sun screan 45 to 50, always wear a hat, and keep covered.

Lupus + Sunlight = one sick kitten

Proper amounts of rest and eat healthy, and um...avoid letting stress get to you. I know easier sad than done, but stress can trigger a flare. So you really do have to learn how to manage the things that stress you out.

Exercise....you don't need to turn into arnold all pumped up...but you do have keep you're joints limber and work your muscles.

I'm sure the others well be along to welcome you soon. Feel free to look around the site, there's lots of nuggets of information.

This is a very warm and caring site :)

Marcia
05-25-2008, 03:24 PM
Hello,

Welcome, I am a 47 y/o female with lupus but I was diagnosed when I was about your age. However my symptoms were present years before a diagnosis. I think that is the case for a lot of people with lupus. It is not necessary your SED rates be elevated for a diagnosis. Lupus is hard to diagnosis so I think that doctors tend to eliminate different things before they will give you that diagnosis. As far as clinics that treat lupus in the western US I don't have an answer. I wish you could get in and see a rheumatologist because I think you are going to get better answers than a clinic, but I do understand your situation with no health insurance. Sits-in-the-corner had some good advise on ways to prevent a "flare" and reduce symptoms. Even when I feel totally crappy I try and do some exercise, I have found pilates to be good for my needs because it works the joints and involves stretching.

I am glad you found this site. Keep posting. There is a huge amount of support here.

Marcia

zone9a
05-25-2008, 07:17 PM
Thank you both for the warm "I'm not alone" feeling. I am quite surprised how alone I have been feeling. In less than 2 years my entire life has been altered. I went from being an active, mountain biking, yoga practicing chef to a life full of unknown and pain. I have been attempting to keep my sense of humor and balance in my life but you reach a point where well...enough is enough.
My cousin has lupus and my aunt has scleroderma so I have seen both in action and I am fairly certain that I am dealing with an auto-immune disease here. I am lucky enough to be in a community of holistic minded people and have been able to explore enough elimination diets, cleansing programs, supplements and lifestyle changes to know that there is something wrong that I can't heal myself.
I do live in So. AZ and it's been a huge effort to stay out of the sun as I am extremely photo-sensitive. Even those energy saving light bulbs make me sick. In fact, we are contemplating a move to the pacific northwest to get out of dodge so to speak. I live my outdoor life from 7pm to 7 am as much as humanly possible. You sould see my hat collection!
Again, thank you for the welcome. I'm sure I'll randomly pop up here and there again. :multi:

Saysusie
05-25-2008, 08:35 PM
Hi Zone9a :lol:

Welcome to our family. I will try to answer your questions in the order that you asked them.

1. Is this treatment and the "wait and see" mentality normal in suspected Lupus?

Unfortunately, to a great extent, the "wait and see" mentality is normal during the diagnostic process for Lupus. Lupus is a very difficult disease to diagnose. The symptoms are never the same in any two Lupus patients. The symptoms even change within each Lupus patients. Symptoms may develop slowly; some symptoms disappear and new ones appear. Lab results can be negative this month and positive next month, only to be negative again next month. There are 11 standard criteria that must be met in order for a doctor to make a Lupus diagnosis (see criteria for making a lupus diagnosis in Newly Diagnosed). A person must meet at least four of the eleven criteria.
To make a diagnosis of SLE, you must show clinical evidence of a multi-system disease (i.e. has shown abnormalities in several different organ systems). Typical symptoms or signs that might lead to suspicion of SLE are:
* Skin: Butterfly rash across the cheeks; ulcers in the mouth; hair loss.
* Joints: Pain; redness, swelling.
* Kidney: Abnormal urinalysis suggesting kidney disease.
* Lining membranes: Pleurisy (inflammation of the lining of the lung); pericarditis (inflammation of the heart lining); and/or peritonitis (inflammation around the abdomen). Taken together, these types of inflammation are known as polyserositis.
* Blood: Hemolytic anemia (the red cells are destroyed by autoantibodies); leukopenia (low white blood cell count); thrombocytopenia (low number of platelets).
* Lungs: Infiltrates (shadowy areas seen on a chest x-ray) that come and go
* Nervous system: Convulsions (seizures); psychosis; nerve abnormalities that cause strange sensations or alter muscular control or strength.

With reference to blood/lab work, the routine clinical tests which suggest that you may an active systemic disease include:
* sedimentation rate (ESR) and CRP (C-reactive protein) binding, both of which are frequently elevated in inflammation from any cause.
* serum protein electrophoresis which may reveal increased gammaglobulin and decreased albumin
* routine blood counts which may reveal anemia and low platelet and white cell counts
* routine chemistry panels which may reveal kidney involvement by increases in serum blood urea nitrogen and creatinine
* abnormalities of liver function tests
* increased muscle enzymes (such as CPK) if muscle involvement is present.

These kinds of abnormalities in clinical tests will alert your doctor to the presence of a systemic disease with multiple organ involvement, such as Lupus.
Please know that there IS NO ONE TEST that can definitely say yes or no to Lupus. The diagnosis is made after considering ALL of the above and after eliminating other possibilities. The entire diagnostic process can sometimes take up to a year before a definitive diagnosis is made.

2. Is an elevated SED rate needed for diagnosis in all cases?
No, it is not. Sometimes a diagnosis is made based upon results of other clinical tests. It is just that most people with Lupus have an elevated SED rate. However, there are several inflammatory conditions, including autoimmune conditions, that can increase the rate at which the red blood cells (erythrocytes) sink in a test tube and form a sediment. SED rate is increased in infections (osteomyelitis, pelvic inflammatory disease [75%]), inflammatory diseases (temporal arteritis, polymyalgia rheumatica, rheumatic fever), anemia, pregnancy, chronic renal failure, and GI diseases (ulcerative colitis, regional ileitis). So, this test alone is not indicative of Lupus. But, when taken into consideration with other clinical tests, and other signs and symptoms, a Lupus diagnosis may be made.

3. Does anyone know of any privately or publically funded Lupus clinics in the western US states where I may have the chance to be seen by a Rheumatologist?

I don't know what part of Arizona you are in, but here is the information for two Lupus Foundations in Arizona:

Lupus Foundation
Arizona Chapter
2432 W. Peoria Ave. #1011 Phoenix, AZ 85029-4727
(602) 870-7622
(602) 870-7488 FAX

Lupus Foundation of Southern Arizona, Inc.
4602 East Grant Road
Tucson, AZ 85712
Contact: Sharon Smiley (Office Manager)
Phone: (520) 622-9006
Fax: (520) 798-0972
The Lupus Foundation of Southern Arizona is a nonprofit organization that offers free services on all matters related to lupus. As such, we offer counseling and advise, wellness workshops, support group sessions and lupus related literature via our lending library. We also offer a "First Year with Lupus" class for those newly diagnosed with lupus.

Perhaps they can refer you to someone who has information about Lupus clinics. I know that the Mayo Clinic in Arizona is one of the nation's frontrunners in Lupus treatments. I do not know if they have a policy for uninsured patients. But, it never hurts for you to ask.

Let me know if this information was helpful to you or if you need more information. I will do all that I can to help you!

Peace and Blessings
Saysusie

DebbieE
05-26-2008, 10:04 AM
Hi and welcome! You're in the limbo line now with a few of us :) While all the blood work for me that Susie listed has come back just like she said minus the CPK (no muscle involvement) and the white count (mine is actually high along with my lymphs) and I meet 7 out of the 11 in the symptom list I'm still not postivly diagnosed. My doctor "suspects" lupus with a probable over lap of another auto immune disorder, but is currently only treating my symptoms rather than the disease it's self.

I am 35. I had joint pain for many years, started at 16, before things went bad. I went into remission for about 15 years and came completly out of it about 6 months ago. Since then, I've had heart involvment and lung involvment, and my over all health has plumeted.

I take Meloxicam (anti-inflamatory), Atenolol (for high blood pressure, rapid heart rate, and chest pain), Flexeril (to help me sleep and help with inflamation at night), Lortab (for pain), an anitbiotic cream for my nose sores (if I stop using it they come back), and now just had Lyrica added to try to help with fatigue and pain. Before January I didn't take any perscription medications.

The best advice I can give you is to take every new symptom to the doctor. If your doctor is refusing to see you for every little thing, let them build up a bit and take them all in at once. That's what I did. When I started having chest pain and shortness of breath, I took that to him and threw in the nose sores and skin vassculitis once I got taken back to a room. If they are refusing to give you pain medication, keep bringing it up. Heck, I had to beg for mine, but once he saw how few I used he has no problems now refilling my prescription for them.

As for places that offer free or cheap health care, maybe try your Children's Hospital. The one here in Arkansas I know treats adults too and I'm sure you'd qualify for reduced or free care. I don't know what your financial situation is, but medicade is a wonderful thing. It pays for everything, even your meds.

Gentle *hugs* and many prayers for you and yours :)

mnjodette
05-26-2008, 12:16 PM
Welcome, zone9a. I'm sorry you've been struggling with those nasty symptoms. You received some great info from Saysusie (as always...she's 'johnny-on-the-spot' with just what we need here!) Everyone has their own experience with lupus (you'll often see it referred to as IT here!)

Yeah, the wait and see mentality often rules the treatment decisions. Many of us waited (or are still waiting) a long while for a diagnosis. And, once diagnosed and medical history is reviewed, it's often clear that lupus (or maybe a close relative!) has been around for a long time.

Most of my blood tests have been normal. Had an elevated sed rate when things were really bad; ANA has been high for years - but nothing else. Lots of other symptoms, though.

I don't know anything about state-sponsored medical programs or lupus clinics in AZ - but the referral to the Lupus Foundation office there should be really helpful.

I wish you all the best....and I'm glad you found us!

Jody

Rastagirl
05-26-2008, 03:01 PM
Hello Zone9a and Welcome...... :)

My heart goes out to you. We ALL KNOW, and understand, your feelings of pain, fear, frustration. It's a very lonely feeling to be in your own little corner of the world suffering. You feel so very alone.

I have had Lupus for 26 years, since I was 18.

It is devastating to be a strong, healthy, vibrant person enjoying your favorite things in life, and then, what seems like overnight, your life is never the same. It reaches deep into your soul and wrenches hard. :cry:

It was agony for me to watch healthy people going on about their lives all around me. I spent a long time in the "it's just not fair" stage.

I am so sorry about your insurance situation. Going without health insurance is a huge stress on anybody that must endure it, but for someone with many health problems like Lupus, or an Autoimmune disorder, it is even more devastating. The stress and worry of income and health insurance are definitely huge factors in how you feel about facing each day. And it's easier said than done, when others tell you that you should try not to stress about it. That's very difficult to do. I know, I've been there.

I'll send some caring cyberhugs your way, and my prayers that you will be successful in finding a place you can access good healthcare soon. I pray that your financial situation will soon take a turn for the better.

Try your best to take care of yourself, and take it 'one day at a time'. If that's too much, then 'one minute at a time'. Sometimes, that's what we have to do to make it through. :)

Fondly,

Lori

Oluwa
05-30-2008, 07:13 AM
Hi Zone9A....

Just wanted to extend my welcome to you too..welcome...

Your questions...Saysusie said it all.

I wish things weren't so hard for you, your health and finances. Is state insurance LNI you referred to or DSHS? Have you tried DSHS?

Maybe the following will be able to provide financial assistance for you health.....follow the links below.

Keep looking for your wellness.
Hugs,
Oluwa

Link for Arizona Health Care Assistant Programs
http://www.ahcccs.state.az.us/Services/Programs/AHCCCSCare.asp

Income limits link..
http://www.ahcccs.state.az.us/Publications/Reference/IncomeLimits/AHCCCSIncomeLimits.pdf


General info...
The AHCCCS Care program provides medical coverage, such as doctor's office visits, hospitalization, prescriptions, lab work, and behavioral health services.

*

The monthly income limit, after allowable income deductions, is $867 for an individual or $1,167 for a couple.
*

There is no limit on the resources or property that may be owned.
*

An individual may apply at any Department of Economic Security (DES) office.
* Call (800) 352-8401 for additional information.

AHCCCS offers several low or no cost medical coverage programs to Arizona families and children. To participate in these programs, all individuals must be U.S. citizens or qualified immigrants. Please be aware that the income limits listed on this site change each year. When looking at the income limits, it is important to remember that deductions are given for work expenses and child care, if applicable.

There are other medical coverage programs that provide benefits for the disabled and senior citizens. If you would like information about these programs, please contact AHCCCS at (602) 417-7000 in the Phoenix area or statewide at (800) 962-6690.


Medical Expense Deduction (MED)

The Medical Expense Deduction (MED) program provides medical coverage for individuals who do not qualify for other AHCCCS programs because their income is too high. However, they may be eligible for MED if they have medical expenses in the month of application (or the previous month) that reduce their monthly income to 40% of the Federal Poverty Level (FPL).

*

Monthly income can not exceed $707 for a family of four, after subtraction of medical expenses. Other deductions that can be subtracted from income before comparing a family's income to the income limit include $90 per month for each person employed and up to $200 per month for child care to enable a family member to work or seek employment.
*

Resources can not exceed $100,000. (Only $5,000 may be liquid assets, such as cash, bank accounts, stocks, bonds, etc.) Home equity is counted toward the resource limit, but one vehicle is not counted.
*

An individual may apply at any DES office
* Call (800) 352-8401 for additional information.

AHCCCS offers several low or no cost medical coverage programs to Arizona families and children. To participate in these programs, all individuals must be U.S. citizens or qualified immigrants. Please be aware that the income limits listed on this site change each year. When looking at the income limits, it is important to remember that deductions are given for work expenses and child care, if applicable.

There are other medical coverage programs that provide benefits for the disabled and senior citizens. If you would like information about these programs, please contact AHCCCS at (602) 417-7000 in the Phoenix area or statewide at (800) 962-6690.