the Eleven Crtieria For Sle Diagnosis From Www.lupus.org (Page 1)

My daughter is a 38 year old who has been fighting the system for 3 years now to get some help. She was officially dx'd with fibromyalgia 3 years ago and began seeing a neurologist. Her insurance was depleted after the first series of tests and her Dr. Subsequently stopped treating her. She does have more than 4 of the 11 criteria for lupus. She lives in a rural section of tennessee. She has been trying to get help from the state with her medical expenses so that she can get the tests she needs run so she can begin a real treatment plan. Tn state medical program is not offering open enrollment at this time. She has been denied disability and told she could probably continue working as a food server = ha, obviously they have never been a waitress! - since that is (according to the state) a low stress job! The state legal department has advised her that she must become destitute in order to receive any aid. As you know, a person who has been dx with fibromyalgia and/or lupus is non-insurable. That alone should make her a candidate for state assistance. She also has a 16 yr old child who is on the state health plan. Her husband is a sub-contractor for a rental property company and makes about $8 an hour and when she can work my daughter works for a mortgage company owned by her aunt and makes about $7 an hour. Tennessee says this is too much money to qualify for aid. They don't take into consideration any debt, living expenses, medical expenses incurred thus far. We are attempting to contact state senators, representatives, etc., any doctors we personally know, the disability department for the state and anyone we can think of that might be able to help. Do you or anyone else on this site have any suggestions? My daughter is in flare-up condition almost constantly and when I spoke with the lupus network, I was told if she does not get some help soon it will be too late and that lupus untreated is always fatal. I am desperate for any suggestions.

I was recently diagnosed. I live in british columbia, canada. I am covered by our medical plan for any test's that are required. I wish the united states would start up a similar plan so that your daughter could get the help she needs.
I get a small pension through canada pension, but I had to fight to get it. I was cut off of my private disability because they said that I could do some sort of work.
Canada pension now looks at the job you were doing and the money you made to look into real type of employment equal to what your years of experience, your age and the amount of money you were making.
They decided that I couldn't be expected to do the same job or find one that I would be able to be at 8 hours a day, 5 days a week.
I also suffer from major depression, anxiety disorder. That doesn't help lupus at all. Stress is a big factor into flare ups. But you can't always stop stress. I hope you get somewhere with your government and convince them of the help your daughter needs.
You can show them this letter if you want. My prayers are with you and your daughter.

Sincerely
geraldine pastoor.

I wish I could over some advice for you'r daughter. I am also in a similar situation. I was denied disabilty due to what I was told.... My education level and my young age (25). I can not cook a full meal with out pain and then I can not do anything the rest of the day. But the goverment thinks that I should still work. You'r daughter and all of the other citzins that fall through the cracks of disability are in my thoughts and prayers.

The only thing I can say is, besides the fact that I too was denied disability from our humble government, is to hire a lawyer.

Lupus is not one of those diseases that jumps out at the people who decide who gets/doesn't get disability.

Talk to an attorney, and make sure you keep a journal of your daily activities, pains, medications, visits to the doctor, etc.

Good luck to all.

Clarebear

Hi ladybrannon
what do you think about this scenario?
I was diagosed almost 15 years ago with cfs/fibro due to positive cmv and eb results after a bout with severe pleurisy that left me with an unshakable fever. Two years later, my ra came back very high, but the rheumo says it's not rheumatoid arthritis. The ana is exactly on the borderline.. One point down is neg and one point up is positive. All docs say they don't know if it's lupus or not.. But my symptoms..Rashes, drug reactions, extreme headaches, joint pain, fevers..Seem to lean that way. I have read that a high ra can, in fact, be lupus. I didn't work for years and finally went back two years ago full time. It was a huge mistake because my lungs began to get very bad after 6 months. Like a fool, I pushed myself thinking I could do it. Now I have severe asthma and take three meds and a steroid inhaler on a daily basis just to breathe. I have lots of chest pain and my headaches have increased, even though I cut back my work load immensely. I have begun having more tingling in my legs than I used to and my wrists are more painful than before. Sore throats and mouth sores are a common occurence, too. The fever has never gone away at all. I always run around 99 to 100.
Of course, fatigue is a given in any of the autoimmune disease which are all so similar.
I have been told that, no matter which one a person has, the prescription is "less stress and more rest." what a joke that is, huh? Having the disease that no one can see makes that virtually impossible, doesn't it?

So,from this info, what would you say I have.. Lupus or cfs?
Thanks,
sunny

Hi sunny1!

I'm not sure. Furthermore, I am not a doctor.

however, in all of this, you have not mentioned your doctors. Where are they in all this? Do you feel comfortable with them?

Have you kept a diary and given it to your doctor for review? This can sometimes help the doctor get a new perspective on it all.

I hope this helps a bit! Let me know if I can be of further help!

Hugs,
ladybrannon

Hi lady b
my docs say lupus. I am not sure.. Just wondered.. In your experience, if you had heard of cfs actually being lupus instead even with an "on the borderline" ana. I have heard that the high ra could mean lupus and that is the logic for the diagnosis since ra symptoms are not prevalent. I have also heard that one does not have to have a high ana to be lupus. Not a big deal in the grand scheme of things as I am living with an "illness" either way. Autoimmune is so hard to diagnose that I was just wondering if this rings a bell with you. If you have not heard of it happening from other lupus patients, then I am where I began. What else is new? Hehe
i hope you are feeling well and thanks for answering my post!
Take care,
sunny

Hello- i'm new to the forum. : the past two months I have been treated for what my doctor told me was lupus-like syndrome and then lupus. The doctor is back to calling it lupus. I have had raynauds, hypothyroidism, malar rash, photosensitivity, rheumatoid arthritis symptoms that respond to high doses of methylprednisone and plaquenil.
I have positive ana blood work, ulcers in my mouth that do not resolve, fibromyalgia, and hospitalized for 10 days with pleurisy and pericarditis, and asthma. I went to see her friday for a post-hospital follow up and told me I didn't have enough criteria to be called lupus. My brother is a physician in another state and he can't figure this out either - I am classic lupus.
not that I want to be sick, but since I am, I want to know what this is!
Two years ago I was very weak and was send to the research hospital in cleveland, ohio and he said I some sort of autoimmune disease but not myasthenia gravis, as it runs in my family and that is what is study was looking at. My mother, grandmother, aunt and cousin all had mg, my brother and dad also had raynauds and migraines (like me).
So, she is weaning me off steroids as I had terrible mood swings, swelling, and unable to sleep. She is starting me on imuran on thursday.
If I don't have lupus why am I being treated for all these disorders and she is backing away from her original diagnosis. I am just really confused - is this an insurance reason? Reimbursement for docs issue?
Somehow having a name for what is attacking my body.
do I write the myasthenia gravis research doctor I saw in cleveland and see what he thinks?
any ideas on what is going on? All I know is I am in pain, following all the doctor's orders, exercising (pilates) taking my meds and trying to sleep at night but that is come-and-go. I was working and had to immediately stop working and driving a car once I came out of the hospital from the pleuritis and pericarditis. Is driving limited due to medications?
well, enough, you can tell I am new to this disease, overwhelmed by the cost and confused by the doctors. Thanks for listening,
confused rn

After all that writing I realized in the first paragraph I made a mistake, the rhue. Is back to calling it lups-like instead of lupus and gives us less information each visit. Thanks
confused rn

After all that writing I realized in the first paragraph I made a mistake, the rhue. Is back to calling it lups-like instead of lupus and gives us less information each visit. Thanks
confused rn

Get a second opinion.

That would be my first step, esp after knowing what the criteria are and also that you have some sort of verification on the disease/diagnosis although it was a casual verification (from your brother you said?)

also, like ladybrannon states all the time, are you keeping a diary of all your ails, aches, pains and general feelings/thoughts? It's great to bring with you to any doctor as we all know that once we have a pain or whatever and then we actually go see the doctor the pain is usually gone and we're less clear of thought on exactly how we were feeling when it happened.

Hope this helps.

Dear penny and bolman,

contact your congressman. I had two years of denial and after writing a letter to my congressman, I now have coverage. Good luck!

Horselvr

My doctor called after finally doing a skin test on a rash I had for a year that came and went and told me I have lupus. I work with mr/dd children full time and have 3 kids of my own. I was talking to a friend that said it is not a good idea for me to stay in my line of work being around sick children all the time with me having lupus.Does anyone know what to do in a case like this I go back to the doctor next week what are some ?'s I should ask?Thanks jen

I picked up this book and it helped me deal with having lupus. It made me feel that all was not lost.

Hey guys...Sorry i've been slacking.

This may be a little late kissthesun2000, but:

being around kids all the time, who are always sick, with an auto-immune disease is a very bad idea.

Your immune system is not as strong as a "regular" person and you are more susceptible to becoming ill.

Definitely tell your doctor the line of work you are in. He/she will better explain to you the whole auto-immune thing.

Clarebear

During my first few flare ups, the emergency room didn't know what it was and neither did i. My family doctor thought it might be lupus and suggested that I see a rheumatologist. The first rheumatologist prescribed prednisone to me incorrectly causing me to end up at the emergency room (idiot). Anyway, the second one did many blood test and thought I had it but wouldn't positively confirm. Unfortunately, he didn't take my insurance and I had to find another doctor. The third and present doctor confirmed that I have lupus. But, I am pretty sure I don't have 4 of the 11 symptoms and I have not had a flare up or any symptoms in about 2 years. I no longer take prednisone or plaquenil. And my latest blood test are barely in the positive. They were very positive for the 3 sets of test before that, during the first 1 1/2 years.

Every heard of anything like this?

Many tests can teeter from pos to neg.

The best thing to do is get a second opinion, regardless of the 4 out of 11 criteria, especially if you are apprehensive.

Clarebear

I have been seeing an internal specialist in louisiana at a charity hospital for over 2 years after my original rhu doctor did nothing for a year and a half and let this get worse. My new doctor is great and I think I was really lucky to get someone like him at a charity hospital. I don't know what other states offer free health care but luckily for me louisiana does. The one thing we do not have is the right help to get all the meds we need just to survive this disease. I have tried almost everything to get help for prescriptions that will costs me over $300.00 a month but so far no go. I am 41 and was in the hospital last wednesday with chest pains, looks like my heart may be in trouble and also my gallbladder. I was a legal secretary for 23 years and can not work. I have been denied disability once because they said my disease was managable and the medicine seemed to help. My reply is come live in my body for one day and tell me that. I am now diagnosed with chronic depression and they say it is because of my disease. Like I don't know that. But now disability is actualling interested in listening to me and I may have a chance of getting it because I am seeing a psychologist. I don't understand the goverment and all their policies they just deny until someone gets enough and hires a lawyer to fight them and in the mean time we suffer and worry ourselves sick. We are not suppose to stress out or we get worse but when I can't pay bills I tend to worry. I hope the lady's daughter can get the help she needs.

My sister is 42 years old and was diagnosed with discoid lupus 15 years ago. Her symptoms are as follows:-

- lesions on arms, legs, face, under feet and finger nails and inside ears
- recent incontinence (8 months to 1 year)
- loss of control/numbness in 1 leg below knee so she uses a walker
- loss of hair including eyebrows

she has been on plaqunil and prednisone for almost all the time since she's been diagnosed, yet she doesn't seem to be getting better. Yet in visit after visit to her doctor, her internal organs are fine, blood pressure, eyesight, etc excellent. Dr says he sees no reason why she's as debilitated as she is.

We're at our wits end, can anyone recommed a good dermatologist in the atlanta area, what about a lupus expert. I don't know if her symptoms are side effects of the medication. She stays at home in bed all day and seems unwilling to fight for her health. Yet she eats like a horse, maybe a side effect as well.

I have done quite a bit of research but I have yet to come across a patient with her combined symptoms. Please give some advice that I can pass on to her.