Lupus???

I have a new Dr at the free clinic here, and explaining what I have, she ordered bloods test and they came back negative and told me all I have is a vitamin deficiency took me off all my meds I was on, and then I have had sever itching on my arms and legs and it has moved to my face, I am suppose to take Benadryl for the itching and I am getting about 3 to 4 hours of sleep per night this has been going on for about 6 months now. Plus I have restless legs syndrome, and other problems,like Raynaud syndrome, dry eyes, ect ect and headaches, which the Dr. has said its all in my head plus a UTI I have had for about 4 months, so I been trying the natural meds, and that's not helping, my question is, is there and other natural meds I can take,that would help, I have had Lupus for 46 years, I have almost decided not to go to any Dr., and let it ride, both my sisters had Lupus, both are gone now and a nephew who had Lupus, and he passed on at 46, I just do not understand after 1blood test now I don't have it,

[Terrier_Lady]

You do still have it, that is just a very bad dr. If you read any medical sites on lupus including the official lupus website it clearly states that there is not any one specific test that says you do or do not have lupus. There are markers that can suggest it but it’s a combination of labs, and physical symptoms that leads a specialist to diagnosis you. I find it frustrating that a dr at a free clinic would even try to diagnosis you as it takes a rheumatologist to do so. Also when a person with lupus is on medications and the disease is controlled effectively those lab tests that lead them in the direction of a autoimmune condition can show up negative because it’s being controlled. By taking you off all your meds it could send you into a flare. That dr doesn’t know what they are talking about. Unfortunelly some drs still have a very old school approach that if your blood work doesn’t show a positive ANA then you don’t have it. That has been found to be untrue. There is a percentage of people with active lupus that don’t test with a positive ANA and there are healthy people that do. It’s just a guide that can lead them toward autoimmune conditions because it’s common with them. Even about 50% of people who have RA will test negative for it at first. There is so little known about autoimmune conditions and most of us with one also have other overlapping issues. When I was first getting very severe he first rheumatologist I was sent to. Said well all your symptoms say you have lupus but your ANA is negative so I won’t treat it. Go back to your dr and have her keep managing your symptoms and we will recheck in 6 months. So even though the physical symptoms could be seen he wouldn’t do anything. Then my dr sent me to a more experienced rheumatologist and he said you have lupus or a lupus like syndrome. He said he wants surprised by the other rheumatologist and some people are still taught that way. But that yes you can have lupus with a negative ANA and it often goes back and forth depending upon what is happening in your body. He started treatment but didn’t treat me agressively. My disease kept progressing. Then my dr and her supervisor started treating me under the advisement of OHSU rheumatology. I’m in the states so I know the systems work differently. But they are a huge teaching hospital. They treated me whil the could research for a rheumatologist that could handle my case. Because the first two didn’t know what to do with me because I also have a generic blood abnormality which has made my lab work always be abnormal. The combination of the two has made this weird severe hard to control lupus the effects me in more ways than is typical of lupus. Finally now I’ve been with my current rheumatologist for a few years and he is the first one to slow disease progression for me. As he had watched things developed he has realized that because of my weird combination I have more unknowns going on then what is already the norm for lupus. This last appt he said it might even be a type of lupus or disease that there isn’t a name for yet. But if you do some research on lupus you will find out that there is still so many things they can’t figure out about it. That’s why they can’t fix it but only suppress it. The cause isn’t even entirely known. So when all the specialist know this and all the huge lupus sources explain how hard it is to diagnosis and no one test can, then you really shouldn’t go to a dr who wants to dismiss it so quickly and take you off all your meds. That is so dangerous and how people die from this disease. If you have lupus you are supposed to have a rheumatologist managing it. The general practitioner isn’t even qualified to diagnosis and manange those types of conditions. It sounds to me like she is very arrogant and one of those drs that doesn’t want to be questioned. I don’t know how it works where you are but can you choose a dr to go see that then should refere you to a specialist. It’s very hard to find a good rheumatologist and that’s another thing you will read about if you research it is it takes a lot of us several before we find the right one to help us. We also often have a medical team as the disease effects different organs we need then monitored. I hope this info helps and please do look into it. There is so much information out there about it and please find another dr. You can’t just be off your meds like that.

[Hidden in reply to Terrier_Lady]

the last blood tests she did showed negative ANA and abnormal small red blood cells, I was diagnosed when I was 14 @ that time it was called Collagen disease and also had the butterfly effect on my face it faded away with time, and my lupus under control, but because I don't have the butterfly redness now " you don't have lupus" but now the butterfly is back on just half of my face, showed up a week ago, and I have had go to ER twice in 2 months and it was $6 thousand at a time, because I don't have any health insurance, I can not go to Rheumatologist, so I decided to try to control the flair's my own self, with natural meds. I am not sure what else to do I just feel a little lost. I have been working between 52 to 60 hrs per week. Thank you everyone who is listening.😊

[Chanpreet_Walia LUPUS UK]

Hi Miserable62,

I am sorry to hear that you are experiencing some difficulties with your symptoms at the moment. Have you thought about getting a referral to see a different doctor?

You may like to get in contact with the Lupus Foundation of America for support and information on lupus specialist doctors in and around your area: lupus.org/

People with lupus can experience periods of remission whereby their lupus is controlled and they feel relatively better; reducing the signs of their symptoms i.e. malar (butterfly) rash. A malar rash often appears when disease activity is higher or when exposed to certain triggers like UV light.

Some people use complementary/alternative therapies for their lupus. Some people may find certain things helpful, whilst others may not find them helpful, or even find they make some things worse. It is important to always discuss any complementary therapies with your healthcare professional before trying them so that they can advise you about any possible adverse effects or interactions with other treatments. You also need to bear in mind that lupus presents very differently in everyone, so you may not have the same experience as someone else. You may like to read our blog article on 'diet & healthy living’ which discusses foods that people with lupus may want to avoid: lupusuk.org.uk/diet-and-hea...

Regular exercise helps to improve sleep quality. Exercise should be done at least a couple of hours before going to bed; otherwise the mind may be too active, making it more difficult to sleep. We published a blog article on exercising with lupus which you can read here: lupusuk.org.uk/lupus-and-ex...

Below I have included some information links which I hope you will find useful:

Itchy rashes: lupusuk.org.uk/coping-with-...

Sleep hygiene: nhs.uk/LiveWell/sleep/Pages...

Raynaud’s phenomenon: lupusuk.org.uk/coping-with-...

Lupus: the mouth, nose and eyes lupusuk.org.uk/wp-content/u...

Headaches: lupusuk.org.uk/wp-content/u...

Please keep us updated, wishing you all the best.

[Hidden]

I am looking for another Dr. Thru a free clinic, I have no insurance. This Dr I have now is not letting up I have a vitamin deficiency gave me a list of vitamins to take and reschedule a CBC at the lab. Now. I have half of a butterfly on my face. And in there words "you better take the vitamins" and I cancelled the lab appointment

I been back to the ER for my itching 3 to 4 hrs of sleep per night is not working,

and I work over 65 hrs a week so I can afford my inhaler because I have asthma.

I just feel between a rock and a hard place.

[Bebe76]

Given your family history and your symptoms, you doctor should be taking you more seriously. As others have said, lupus can go into periods of remission, with or without medication. It sounds like you may be having a flare up now that your current doctor stopped all your medication. If left untreated lupus can cause permanent damage. Is there another doctor at the free clinic you can go see? Do you have your previous medical records that show your lupus diagnosis? That will be helpful to show your new doctor that you definitely do have lupus. ANA levels can go up and down, usually it is only used for diagnostic purposes, and you were already diagnosed. Also, positive or negative ANA alone doesn't mean you have or do not have lupus, it takes many other tests and clinical symptoms for diagnosis. Unfortunately many GPs do not have enough knowledge of lupus and make the wrong decision for their patients. I hope you can find a new doctor and get the help you need soon.