Well I went to the dr today, I have to use a public hospital so I see students. My dr basically couldn't give me the official diagnosis because his attending wouldn't do it. They are going to send me to rhuematology. That could be next year before I get seen. The problem is that they won't refill the plaquenil because rheumatology would want to do it themselves. So I have no firm diagnosis, will have nothing to treat the symptoms until I see another department. I miss having insurance and hate being dependent on a department that the head of is not very nice. This will be the second time I've had a referral to that department because of my blood test that was done indicated lupus but he refused to do anymore blood tests, refused to look at the blood test and basically called me a faker.
You are not a faker, lupus masks as so many illnesses that it is impossible for a GP to diagnosis it, the rummy needs to confirm it. The GP can not prescribed medicine for an unconfirmed illness, only for symptoms. Health insurance is available through ACA for all people go online and enroll. I know it’s frustrating but know this is an uphill battle and we need the doctors as our soldiers, just take a moment and breathe. If you feel horrible go to the er they will always treat you. Good luck. Sign up for ACA.
I pray that your obstacles get better. Hang in their please it will not always be like this.
I can't afford the ACA, the monthly amount is over $200 a month with around $600 deductible, if I was in another state I could afford this but not in Louisiana. My husband and I are barely able to pay the house note, every month it's a challenge to pay all the bills. So I am at the mercy of this hospital for now.
Omg, this kind of treatment is outrageous. I don’t even know what to say…well, WE know you aren’t a faker!
Thank you. it just makes me wish I hadn't said anything but the damage in my hands wouldn't have been discovered so that's one thing. I hate being in pain and exhausted all the time. Oh well...hopefully I'll get it figured out soon.
I sure hope you don't have to wait too long. I really feel for you. Like being between a rock and a hard place. I'll say aprayer for you!
Wishing you well!
Hi!!! , sorry that you are going through this rough moment -smile check with your LUPUS chapter in your state or the LUPUS FOUNDATION in California , they will be able to help you . Also you can go file for disability ....Beverly L.
well those doctors sound like jerks! i am so sorry you have so long to wait for an apt. i luckily have state ins. i am on ssi......but i still cannot get into see a new rhuemy for six months myself....go to an emergency is all i can say to get your meds filled. god bless, and keep hanging in there.....purrs..catspaw1955
I'm hoping that I'm worrying for no reason and this time will be different. The test results show point to lupus, I have vasculitis and pain in my joints. So something is going wrong, so maybe they can fix me.
Hi Rebeccainla..I know how hard this disease is and I have had the same fate as far as having really good insurance then having no insurance and it really does suck.. I am sorry that anyone has to go thru this. I am in the same boat , no insurance, and my husband died last May, which left me widowed, no insurance, and sick as all get out!
I also have the same bad luck as you as far as doctors go. The rhuemy in my area is the only game in town and he thinks he is GOD almighty. Arrogant doesn't even begin to touch on this POS. He has made my life hell for years now. He refuses to give records and continuously violates my HIPPA rights.
Just try to hang in there and keep fighting to get answers, it took me years to finally get my diagnosis.. I am a survivor tho..I've had Lupus for 17 years now , and eventually I will get to a better place and you will too..Keep hope :) Cyndi
Good grief, that man just sucks. I'm sorry that you've had to fight with him, instead of working with you, it seems that he wants to fight. I don't get it but after watching my husband's experience with the few rheumatologist in my city, he has rheumatoid arthritis, it seems par for the course. I am not sure why it is like this but it makes it so hard on their patients lives.
Ugh.
When this happened to me, my hubs called the president of the hospital and talked for over an hour. They can’t change your treatment without a diagnosis of some kind, and must justify removing a medication and changing a diagnosis. You can fight this. I think they count on our exhaustion to quit fighting though. I wish we had local groups of patients that could band together to help each other out when we need to borrow some courage and a cup of strength.
Good luck Hon,
Ellen Schnakenberg
The Dr told me that the rhuematology depart likes to write their own prescriptions and he couldn't do anything about it. If it had been up to him he could have given me the firm diagnosis but he couldn't. This is the way it's run in the hospital. I am honestly lucky to have gotten blood test done. My husband could call but it wouldn't do a darn thing, this place is a mess.
I wish I could tell you something good, in my own experience the rheumy's they have locally are crap and think they are gods, there's only a few here in swfl. I'm going to USF in Tampa some 100+ miles north of where I live hoping to find a good rheumy being a teaching facility usually means you get pretty good care, at least that was my experience in chicago where I'm from.
Maybe they have the class "how to be a jerk to your patients," while in school.
I have to go hour and half away to see my rheumy at an Emory clinic because there was a break down in communication between my former rheumy and my kidney doctor. I do this every 2 or 3 months. My former rheumy was in a teaching clinic and I could only see her in the clinic not her office. She didn't even have me down as a patient. It's very important that these two doctors communicate about my treatment. So I had to do what I had to do. Go to another city.
Good grief...sorry about that mess. I finally have an appt in January, so I'm crossing my fingers. There isn't anywhere else I can go because of no insurance and I'm in the 3rd largest city in my state so that access with specialists are not good.
hi hopeful, I am going to see new rheumy with my mamma,,(she has rhuemetoid arthritis )this one is in a clinic in Corvallis , Oregon ......since we live on the coast, it is 70 miles away...but it is always a nice ride........and hope h can run most of the tests that I need, so I can get my prednisone, and plaquenil refills, well the 28th is my birthday and I will be 59, my sister is baking me a wonderful cheese cake.yummy.purrs..catspaw1955
hopeful said:
I wish I could tell you something good, in my own experience the rheumy's they have locally are crap and think they are gods, there's only a few here in swfl. I'm going to USF in Tampa some 100+ miles north of where I live hoping to find a good rheumy being a teaching facility usually means you get pretty good care, at least that was my experience in chicago where I'm from.