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Medical Forum / Diseases and Disorders / Lupus / June 2006Lupus
Not sure I have posted here before but here goes..I am 59, suspected of having Lupus..I do have all the symptoms as well as Reynaud's Phenomenon..Kidney problems, tiredness, bloated abs, Red blotches on face and all other symptoms..Dr suggests Lupus test but will not order it because.....I have no ins!!! and I can't pay for his BEAMER!!! My sister has Lupus..Does anyone know the cost of the tests and if they can be done here in Idaho at a local hospital ?? Any such thing as a grant for POOR people..?? Thanks HOPE > Not sure I have posted here before but here goes..I am 59, suspected of > having Lupus..I do have all the symptoms as well as Reynaud's [quoted text clipped - 4 lines] > be done here in Idaho at a local hospital ?? Any such thing as a grant > for POOR people..?? Thanks HOPE I heard the tests are expensive and sometimes have to be redone, over time, before the bloodwork or other tests, combined with signs meet the criteria of the ACR. How did your husband get diagnosed and treated? If he has insurance, can't he add you to his plan? Option 2 Apply for SSDI, Medicare or Medicaid. Could you apply for SSDI based on the combination of each individual problem? After approval, they backpay some. Talk with others here and/or your husband, because I don't know the ropes of these things. J Looks like Idaho has indigent care but they put a lien on assets. If your kidneys are in bad shape that might be "emergency" medical care, but I don't know if that's enough to get you on SSDI Seems to me the doctor should be helping you with these issues. Some reading for you and/or your hubby. http://www.elmorecounty.org/offices/indgent/indigent.htm http://www.adaweb.net/Departments/IndigentServices/MedicalAssistance.asp (I think different county but read this) When do I need to file my application? * If the medical service is not an emergency, you must file your application no later than ten (10) days prior to receiving services. * If the medical service is an emergency, you must file your application within thirty-one (31) days beginning with the first day of the provision of the medical service. * If you will need additional treatment related to an original diagnosis in accordance with a preapproved treatment plan, you must file your application ten (10) days prior to receiving the services. * A delayed application for necessary medical services may be filed up to one hundred eighty (180) days beginning with the first day of the provision of necessary medical services provided that written documentation is included with the application or no later than forty-five (45) days after an application has been filed showing that a bona fide application or claim has been filed for Social Security Disability Insurance, Supplemental Security Income, third party insurance, Medicaid, Medicare, crime victims compensation, and/or workers compensation. Hi Hope, Are you near a teaching hospital? That would be my suggestion. When I went to one at the beginning of my illness, they did every test in the book and merely had me sign to pay them 5 bucks a month. Then they got the social worker involved in the process of getting me on Medicaid and disability. They gave me the meds I needed too. They usually won't turn you away like a private doctor will. HTH Maggie > Hi Hope, > [quoted text clipped - 4 lines] > disability. They gave me the meds I needed too. They usually won't > turn you away like a private doctor will. HTH Thanks Maggie, Sounds better than my idea :) J How would I locate a Lupus teaching hospital in Boise ? > How would I locate a Lupus teaching hospital in Boise ? In my opinion you're better off sorting out the health insurance BEFORE getting a lupus diagnosis, (if that's what you have). St. Alphonsus Regional Medical Center is a teaching hospital. J My husband never had Lupus, it is me being suspected of having it...I had SSI at one time and then my husband went on SSDI and I lost everything. Have been turned down by Medicaid, SSA, and cant even get my Kidney Dr or any other Dr wrte a letter of disability for me.. Hope > My husband never had Lupus, it is me being suspected of having it...I > had SSI at one time and then my husband went on SSDI and I lost > everything. Have been turned down by Medicaid, SSA, and cant even get my > Kidney Dr or any other Dr wrte a letter of disability for me.. > Hope Well, I searched the archives and your husband's been undetectable for 4 years and he's had a knee problem and has some heart problem and depression, but he's been offered a part time job. So between the SSDI income and part time, (seeing as you live in an inexpensive place) he should be able to buy you health insurance. A lady with breast cancer and many, many other problems only pays $400/month for good health insurance, but I don't know if she got the health insurance before her cancer diagnosis. I don't know what's wrong with your kidneys. If there's a problem yours might cost more. You're not allowed to hide diagnosed problems from health insurance companies. Medicines cost, testing costs, surgeries cost. My understanding is you may need some eye testing? I've (and others here) lived with Raynaud's for years - no midicines. Fibro is an inexpensive sleep medicine especially if you don't work outside the home. So the eyes and possibly the kidneys may need the chunk of moeny. (if I got anything wrong, I dont have time to read every single post, but read as many as I could). In my opinion you're better off sorting out the health insurance BEFORE getting a lupus diagnosis, (if that's what you have). J > Not sure I have posted here before but here goes..I am 59, suspected of > having Lupus..I do have all the symptoms as well as Reynaud's [quoted text clipped - 4 lines] > be done here in Idaho at a local hospital ?? Any such thing as a grant > for POOR people..?? Thanks HOPE That's very true - about getting insurance before a dx. I'm uninsurable since my Cobra ran out because of lupus. Is there an Open Enrollment program in your city? Ours, in Akron, is advertised in the local paper in May & has to be paid by the end of June. Unfortunately it's $6,000 a year. BUT you can't be turned down. What I'm doing now is going to a really great free clinic ($20.00 per visit) & they do all testing for free. But they're going to consider your hubby's income. I just 'live' with my hubby, primarily for that reason. He owns his own business & makes a ton of money but I don't want to be any more of a burden that I am. Sometimes it's hard to find these places, but I found one that's absolutely awesome. Maybe check with your local LFA group? Candi Hi Hope... J got it! You don't want a diagnosis if there's any chance of you getting insurance. If you were on SSI, this means you didn't have the credits for SSDI and there's really no need in spending your time fighting SSA, because as you said, once your husband made one penny more than that SSI check, they cut you off. I would spend my time searching for free/low cost clinics and medicine programs. Here is a link to indigent services in your county, they may have info on programs & clinics in your area. http://www.adaweb.net/departments/indigentservices/Resources.asp You may also call the health department and see what they suggest. I didn't mean a Lupus teaching hospital specifically, just a teaching hospital. Like the University of Idaho Hospital. I'm not sure where that would be from you, but it may be worth checking into. For one, the University pharmacy's don't normally sell meds for profit. I saved tons of money on my meds prior to having Medicare pay for them beginning this year. But to use the University Hospital Pharmacy, the prescription must be written by one of their doctos. It may very well be worth a trip once a year just for the meds. They mail me my prescriptions here and when I told them I'd be going to TN, they said they'd mail them there too, so long as I had a prescription from a doctor at the University Hospital here in KS. However, if you don't think you can make such a trip even once a year, you can check into medicine programs. Most pharmaceutical companies give away free meds to qualifying recipients. Here's a link for that, so keep this in case you can't find another way to do this. If you go to a clinic they usually have these resources available and will help you with it all there. http://www.nami.org/Content/ContentGroups/Helpline1/Prescription_Drug_Patient_As sistance_Programs.htm Hope, I know you're in a bad situation and it's a shame they cut people off like this, but there's also lots of programs and help available. You just have to be dedicated to searching them out and I think the worst part is accepting the help sometimes. You can also check into your state's Medicaid programs if your kidneys do get worse. I know in KS one can automatically qualify for Medicaid if they have to have dialysis. I hope you find some help and I hope you'll let us know how things are going. God bless you and Howard. Maggie > Not sure I have posted here before but here goes..I am 59, suspected of > having Lupus..I do have all the symptoms as well as Reynaud's [quoted text clipped - 4 lines] > be done here in Idaho at a local hospital ?? Any such thing as a grant > for POOR people..?? Thanks HOPE Hi Hope, I'm Krista, I'm 30 years old and have been diagnosed with fibromyalgia, Lupus, and Anti-phospholipid Antibody Syndrome. The last batch of tests cost me about $250 without insurance. Also, it sounds like you need to find a good Rheumatologist! They'll test you for Lupus. I hope this helps. It does take a while to show up in the blood stream, took me 3 years, so it may not show up. I don't know how many times they tested me. I hope this helps. Welcome to our group, sorry you're sick, and nice to meet you. Plus we give lots of hugs here! (((hugs))) Krista ((((HUGGGGS))))) 2 U 2 Thanks I have read all these posts and all I can say is I will no linger complain about my drug costs as they are almost nothing compared to what you guys are going through. I live in Canada and I pay the first $350.00 per year and then I am covered at 70%. I do not pay for any doctors visits or the numerous tests I have had. No cost for lab work, ultrasound, or CAT scan. I now realize how lucky I really am. I have a rheumatologist that comes to our little town every 3 months. I am sorry to hear about the struggles you are going through. Janice in BC > Not sure I have posted here before but here goes..I am 59, suspected of > having Lupus..I do have all the symptoms as well as Reynaud's [quoted text clipped - 4 lines] > be done here in Idaho at a local hospital ?? Any such thing as a grant > for POOR people..?? Thanks HOPE > I have read all these posts and all I can say is I will no linger complain > about my drug costs as they are almost nothing compared to what you guys are [quoted text clipped - 5 lines] > I am sorry to hear about the struggles you are going through. > Janice in BC Do you have a spare bedroom? I've decided to become a Canadian citizen... ;) hee hee (((hugs))) Krista DITTO.... and amen too! from Shelagh in BC!! hugs to all! http://clik.to/lupus >I have read all these posts and all I can say is I will no linger complain > about my drug costs as they are almost nothing compared to what you guys are [quoted text clipped - 13 lines] >> be done here in Idaho at a local hospital ?? Any such thing as a grant >> for POOR people..?? Thanks HOPE All of our medical care systems and insurances could stand improvement. But I really think that "Socialized" medicine would be best for all countries and people. Doubt that it will happen in the USA but I can hope. Sherry Socialized medicine in USA? Heck no the politicians and drug companies would have a fit.. ehehe me who else Like I said I can dream can't I? Keeps going the way things are and it is anyones guess on whats next. They are trying to pass legislation out here in CA that everyone has to have medical insurance. When I first heard that I thought are they gonna legislate the money to pay the premiums for everyone to have health ins. not likely. My son is without health insurance because he works for a small company (his boss and him) and it kills him when he has to go to the er or anything but he can't afford the premiums on his income and still live. He just goes gets the bill and then calls and makes payment arrangements. (they can't get blood out of a turnup) Glad you are doing better with your finger and that the spint will be history soon. Have a great summer. Hugs, Sher FWIW, you can have SLE and all the bloodwork show otherwise. Lupus is very difficult to diagnose at times. I have been my sickest and all the bloodwork show that everything is normal..... and have been feeling good and the bloodwork be all over the place. There's a certain percentage of lupus and RA patients that have the disease despite what the bloodowwork shows. With lupus, there's a certain list of criteria... if you meet this criteria and all other disease has been ruled out (which is more important than running some of the "lupus tests"), the odds are, you have lupus Plaquenil can take several months before it starts working so you'll have to be patient. Good luck BTW, where do you live? I'm in Central CA. Nicole Here's some info that'll help please go to the Lupus Foundation of America site www.lupus.org and read all the information they have. It is the most current information available and you will learn a lot! Also, either buy or go to the library and get Dr Daniel Wallace's "The Lupus Book" 3rd Edition and read it cover to cover. Dr Wallace explains in layman's terms everything you need to know.... just as the LFA does. The LFA also offers a magazine called Lupus Now which is full of great info. The Arthritis Foundation www.arthritis.org also has a lot of helpful information, a magazine Arthritis Today. There are over 100 forms of arthritis so there's a lot to learn. The National Institute of Arthritis and Musculoskeletal and Skin Diseases offers FREE publications. Take advantage. http://catalog.niams.nih.gov/ There is a wonderful lupus booklet which is completely free. There are many other pieces of great info also. Medline: Lupus offers links to news and resources about the chronic autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue. www.nlm.nih.gov/medlineplus/lupus.html Glean your information from reliable sites such as those listed above. I only quote from the above sites but even on this list, there can be incorrect information and has been. You have to be your own health care advocate. Your doctor is not going to sit down and educate you in regards to lupus, fibro, etc. He/she doesn't have time and most likely doesn't even know where to begin. > Not sure I have posted here before but here goes..I am 59, suspected of > having Lupus..I do have all the symptoms as well as Reynaud's [quoted text clipped - 4 lines] > be done here in Idaho at a local hospital ?? Any such thing as a grant > for POOR people..?? Thanks HOPE >FWIW, you can have SLE and all the bloodwork show otherwise. Lupus is very >difficult to diagnose at times. I have been my sickest and all the [quoted text clipped - 5 lines] >and all other disease has been ruled out (which is more important than >running some of the "lupus tests"), the odds are, you have lupus http://www.northeastlupus.org.uk/hughfaq.htm  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Not sure of the cost, I would think there would be some kind of social service agency you could contact. You could try your local Lupus foundation chapter, you can find that on the internet. The one here in Buffalo, NY is not too help. They insist that I sign up for the newsletter, $28 a year, and then I would have access to whatever info they have. I refused, I told the woman on the phone that I didn't have to pay to get the Lupus in the first place! After much searching it seems that if you are indigent in NYC, you can get all the help you need, free meds, doctor's appointment, social service, the works. Talk to your sister's doctor, maybe he knows of an agency that can help. Good luck, Marie >Not sure I have posted here before but here goes..I am 59, suspected of >having Lupus..I do have all the symptoms as well as Reynaud's [quoted text clipped - 4 lines] >be done here in Idaho at a local hospital ?? Any such thing as a grant >for POOR people..?? Thanks HOPE > Not sure I have posted here before but here goes..I am 59, suspected of > having Lupus..I do have all the symptoms as well as Reynaud's [quoted text clipped - 4 lines] > be done here in Idaho at a local hospital ?? Any such thing as a grant > for POOR people..?? Thanks HOPE |
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