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scarednewmom
06-25-2008, 03:31 PM
Hello all my name is gena I'm 21 and from bismarck north Dakota haven't been quite diagnosed but had a positive Ana test and primary doc stops at that referred me to a rheumatologist apt is in july 24th which feels like years away. So many questions so many fears!!!! I have been reading a lot of symptoms and medications etc finally decided to become part of this wonderful family so hello nice to meet you all

KathyW1958
06-25-2008, 03:51 PM
Hi Gena
Welcome to the forum. There are a lot of people who are just wonderful that come in here. I am glad that your PC referred you to see a Rheumatologist. A lot of PC's will not diagnose Lupus, even if they suspect it. I know the one I saw told me that I had Lupus, but refused to treat me and sent me off to the Rheumatologist who agreed with him and put me on several different medications to get the Lupus under control. A lot of PC's are very uncomfortable treating Lupus, because they do not know that much about the illness. I hope that you get some good answers when you see the Rheumatologist. Keep posting ok.

God Bless,
Kathy

Oluwa
06-25-2008, 07:19 PM
Hi Gena..

Welcoming you with open arms...not under the best of circumstances, but nevertheless our welcome is warm, with care, and understanding.

Aren't the appointment dates crazy. I just made an appointment with a GYN, new Dr...August 6.

Usually for new patients, with any doctor I notice it is like 6 weeks out...once in, 2 week wait...

Read more about, chat up...and you will be better prepared for your appointment on July 24.

We have a lot of experience, with doctors, with being undiagnosed, diagnosed, limbo, tango, variations of prescriptions, reactions, rashes...aches, pains, regimes, how to feel better...eats, exercise...find ways to laugh, to cope...to life in the day...dig in, ask...

It is easy to say not to be scared but I still get scared too. I think we all do. Sometimes more scared of what may not happened,..so lets fear not together. We will help you through it...we understand.

Again welcome, Gena...

Hugs,
Oluwa

Saysusie
06-25-2008, 09:26 PM
Hi Gena;
Welcome to our family. I know that this is a frightening time for you, being newly diagnosed with such a scary disease. You are lucky, however, that you got a quick referral to a rheumatologist. I know that the wait can seem endless, but during the wait, please feel free to come to us with any questions, concerns, to request any information or just to chat. You will find that there is always someone here who is more than willing to help you in any way that they can. It is important that you know that you are not alone.

Peace and Blessings
Saysusie

scarednewmom
06-25-2008, 09:45 PM
Thanks you all are so comforting I don't know how I would be feeling right now if I didn't have you to talk to. Its even comforting to just be on the site reading things anyhow I guess my question is can a Ana positive test mean anything else besides lupus and hair loss why does lupus do that if I do have lipuss? I just had a baby Feb 12th linked and will my child have it too since I was oregnant and probably had it also biggest fear how does lupus kill a person and how long before a person dies sorry to be so blunt but I read many different things some good some bad do I call my childs pediatrician

Saysusie
06-25-2008, 10:19 PM
ScaredMom;
First, Lupus is not a Death Sentence. Yes, people do die due to complications of Lupus (my daughter is one such person), but there are many, many people who have lived many, many years with Lupus and have no life threatening issues at all (I am one such person). Nowadays, with medication, lifestyle changes, and necessary precautions, you can manage this disease and maintain a relatively normal lifestyle for many years.
While the treatment for SLE has improved and long-term survival has increased, it remains a chronic disease that can limit your activities. Although severe sickness can occur, this usually results from the most serious forms of the disease (when internal organs are damaged). Your quality of life is mostly compromised by symptoms like fatigue and joint pains. These symptoms are, in no way, life threatening. As I mentioned, the best way to control lupus is to be very careful to take all your medications as prescribed, visit your doctor regularly, and learn as much as you can about lupus, your medications, and your progress. Also, become proactive in your health care. Don't take a back seat.

With reference to your question about ANA. ANA can be positive in several other diseases. That is why it is not used to diagnose Lupus. Even though most Lupus patients have a positive ANA, the ANA test is only a part of the diagnostic process. You must meet other criteria, including the positive ANA, in order to be diagnosed with Lupus (However, there is a condition known as ANA Negative Lupus).
The ANA test is ordered to help screen for autoimmune disorders and it is most often used as one of the tests to assist in the diagnosis of systemic lupus erythematosus (SLE).
Other conditions in which a positive ANA test result may be seen include:
*Sjögren’s syndrome: Between 40% and 70% of patients with this condition have a positive ANA test result. While this finding supports the diagnosis, a negative result does not rule it out. The doctor may want to test for two subsets of ANA: Anti-SS-A (Ro) and Anti-SS-B (La). The frequency of autoantibodies to SSA in patients with Sjögren’s can be 90% or greater.
*Scleroderma: About 60% to 90% of patients with scleroderma have a positive ANA finding. In patients who may have this condition, ANA subset tests can help distinguished two forms of the disease, limited versus diffuse. The diffuse form is more severe. Limited disease is most closely associated with the anticentromere pattern of ANA staining (and the anticentromere test), while the diffuse form is associated with autoantibodies to the anti–Scl-70.
*A positive result on the ANA also may show up in patients with Raynaud’s disease, rheumatoid arthritis, dermatomyositis, mixed connective tissue disease, and other autoimmune conditions.

With reference to Hair Loss:
Hair loss is one of the most important features of active and/or severe lupus. It may be the first manifestation of the disease and is often first noticed by the hair on the pillow. In some cases, the hair loss is patchy and even extreme (I was almost completely bald). Fortunately, in the vast majority of patients, the hair re-grows after successful treatment. Hair loss occurs in over 50% of Lupus patients.
Sometimes lupus causes a rash in the scalp — called a discoid rash — that causes scarring of the hair follicles. This hair loss due to scarring (cicatricial, or scarring, alopecia) can be permanent. In addition, medications used to treat lupus, such as prednisone and immunosuppressive therapies, may cause hair loss that is reversible and not permanent. Most frequently the hair loss occurs at the onset of the illness and once it grows back, hair loss does not recur in the disease.

With reference to your child having Lupus:
It is suspected that people inherit something from their parents that predisposes them to develop lupus. They are not necessarily pre-destined to develop lupus, but they may be more susceptible. Relatives of lupus patients have an approximate 5-12% greater tendency to get the disease if family members have it. Heredity does seem to play a role. Ten percent of lupus patients have a first-degree relative (sister, daughter, son, mother) or a second-degree relative (aunt, uncle, first cousin) with lupus. But, that means that 90% OF LUPUS PATIENTS DO NOT have relatives with lupus. Even in identical twins, when one sibling has lupus and the other twin does not, it is believed there are environmental factors that play a much more important role than hereditary.
The precise reason for the abnormal autoimmunity that causes lupus is not known. Inherited genes, viruses, ultraviolet light, and drugs may all play some role. Genetic factors increase the tendency of developing autoimmune diseases, and autoimmune diseases such as lupus, rheumatoid arthritis, and immune thyroid disorders are more common among relatives of patients with lupus than the general population. Some scientists believe that the immune system in lupus is more easily stimulated by external factors like viruses or ultraviolet light. Sometimes, symptoms of lupus can be precipitated or aggravated by only a brief period of sun exposure.
It also is known that some women with SLE can experience worsening of their symptoms prior to their menstrual periods. This phenomenon, together with the female predominance of SLE, suggest that female hormones play an important role in the development of SLE. This hormonal relationship is an active area of ongoing study by scientists.

I hope that I have answered your questions. Please let me know if you need anything further.

Peace and Blessings
Saysusie

Oluwa
06-26-2008, 05:39 AM
Scarednewmom...

Hugs..I read on another thread you expressing your fears, scared, death..I would like to say a bit more, than I previously had. With an illness, without an illness we all face death.

With an illness we are afraid to live, afraid to die...so we end up not living at all, or hardly at all.

We, humans, me...us, usually fear what hasn't happened, anticipating, waiting, wondering....letting our imagination take us on that wild, gloomy feeling ride. Robbing us of joy that we could be having this very minute, this very moment. A moment of joyment that we let slip pass, by worrying about something that has yet to happen...symptoms of our illnesses.

Luke 6:23 Rejoice ye in that day, and leap for joy: for, behold, your reward is great in heaven...

IT (Lupus) feeds off our anxiety, our fears, our stress..inciting it more which we want to prevent, to manage the stress. If, I may, maybe seek a counselor to discuss your fears. They are natural to have, but to have someone help put them in perspective maybe something that will be helpful.

If, you are self help person, I find Buddhism, The Tibetan Way of Living and Dying has helped me through the scaries.

There is no one certain path to find peace...to find a calm for your spirit. For me, I am finding my way through Christianity, Buddhism..this forum's family, through my Auntie's love for life...and through the life that is happening around me.

I find a calm in other's words, in a book, in a cloud that is an island in the blue ocean sky....or while being scanned during an MRI....thinking.

Find your calm in your new baby's coo, in her/his exploration, explore her/his world together...

When the disease happens, mind it then but don't waste time with the mind when nothing has happened...

Hugs,
Oluwa

busymom3
06-26-2008, 07:17 PM
Hi there!

I am new here too. Like you, I had my regular doctor take an ANA and it came back positive. She referred me to a Rheumatologist. I had to wait almost 6 weeks for that appointment, so I know how you feel. I got myself kind of worked up by reading and reading. I had my appt. on Monday and learned nothing, but had a lot of blood drawn. :D I was upset at the time, but not so much anymore. Anyway the whole point to this is..I know how you feel with the not knowing. I have decided that I am not going to worry about it for now. There is nothing that I can do except 1)start exercising (which I did) and 2) get my sleep (kind of tough, but I am working on it) and 3) hang out here (because everyone is so nice)

I hope that answers come swiftly for you. Hang in there. Congratulations!

scarednewmom
06-26-2008, 11:01 PM
I don't know what I would do without you all I really don't!!!! I feel comforted just reading on the website....anyhow let me tell you my story.... Ive always had joint pain for as long as I can remember. But I have very flat feet and thought that's why my knees and legs hurt because my feet are weird! I had my baby by c section and during the surgery process they give you an antibiotic shot as a prevention type of thing anyhow it killed all my good bacteria and I got c diff which can kill you if not treated it inflames your colon and stuff so I got treated but it still wouldn't go away so I had to see an infectious disease doc and he put me on a 6 week taper and I was on another forum about c diff and someone mentioned something about they had to get tested for lupus a big light bulb came on and I started researching stuff and wow I remember my aunt died when she was 28 and my dads nephew died when he was 8 and my cousin died when she was 18 all on dads side....died all from lupus and on my mothers side my aunt has rheumatoid atheritis very bad to the point of joint damage. She is on methotrezate shots and some kinds steeroid shot and I thought I had cdiff again and I didn't even thouigh my stomach was inflammed and my sed rate came back slightly elevated so then boom went to see doc and she tested for Ana and boom positive but see how easy it is to say that but while waiting for my results I have been going through so much crying then feeling okay crying then feeling okay I quit my job just everything sucks right now my family is crying all the time I just don't know what to do with myself I can't even look in the mirror I don't find pleasure in anything I just am confused and scared and evetthing also someone suggested I apply for disability and Medicaid any thoughts? Also Ana test positive what else can I expect? What more kinds of tests and what do they mean? And what do the meds do what are good things to eat for lupus? And just everthing what can I do to keep healthht what can I expect when I go to the docs offfice? What should I ask? Sorry guys? Also I know people die from lupus complications but what kind? Is it something they coulda prevented?

KathyW1958
06-27-2008, 02:44 AM
Hi Scared

When I first got diagnosed with Lupus back in 1996 I too, was very scared. I mean I had suspected it for years, that I had Lupus, but could not get a doctor to even listen to me. I have a great Aunt that passed due to, what my family all came to believe, was Lupus related heart disease. That was before they had all the medications that they have today. Yes, there are people who do die from Lupus complications, but that is not the norm. I have been taking medications for over 14 years and my lupus is pretty much under control with minimal flares from time to time. As you know, there is no cure, but the illness can in most cases be managed and managed very well. I have a sister that has Lupus and well she had a stroke, but she is ok now. She had the stroke right after I got diagnosed, so you can imagine the fear I felt. As you learn to deal with your illness, the fear will subside. Please hang in there. Saysusie is great and she will have a lot more information I am sure that will help you. I am pretty new to this site. I did not really do much in the way of learning about Lupus, because I did not know who to talk with about it and I found through the years that a lot of folks do not know that much about this illness, and that includes a lot of medical doctors. I am learning more and more as now I want to know. Hang in there hon.

Kathy

rob
06-27-2008, 08:00 AM
Hi Jena,

I was diagnosed with SLE at the age of 36, I'm now 40. Being diagnosed was one of the scariest points in my life. The fear, the thoughts of death, were awful. That was 4 years ago. Lupus symptoms are a daily part of my life. I have a bad flare every 2 or 3 days, with my symptoms never totally going away between flares. It can be very hard to deal with on the bad days. But, I also have good days. Sometimes I have really good days as a matter of fact. Yes, I've had to make many changes in my life, and it has not been easy, but it's been 4 years since the diagnosis, and I'm still very much alive. Lupus is by no means a death sentence. We have members here who have had SLE for ten, fifteen years or more, and are living and coping with their disease. I can feel the fear in you words, and I want you to know you are not alone. I've felt it too. I noticed some similarities between you and I as far as symptoms. I had patches of hair fall out on the back of my head. Alopecia Areatta is the term, and it's what led my to the SLE diagnosis. I also have a family member with SLE, my mother. My ANA was positive, and I was referred to a rheumotologist, who gave me the diagnosis. I am on full social security disability, as I'm unable to work. Just remember, Lupus IS NOT a death sentence. I'm really glad you joined our family here. I've found friendship, comfort, and understanding here that have really helped me cope, and have given comfort on my bad days. I think you'll find the same thing here. Welcome.

Rob

DebbieE
06-27-2008, 09:16 AM
Welcome. I'm so sorry you're feeling like you are right now. We all have felt what you have though. The fear. But you can't let it stop you from living!

I am a 35 year old woman with 2 children ages 8 and 9. Like you, I've had crippling joint pain for most of my life. I got an infection in my hip joint when I was 5 and have always walked with a limp since then. Then at 16 I started swelling and had days I couldn't walk at all due to the pain. We all thought it was arthritus, but my parents wouldn't take me to a doctor and told me it was just something I'd have to learn to live with, so I did. Then this past Dec something changed. I knew what I had was getting much much worse and the time had come to go to the doctor about it. Doctor suspected RA, did a bunch of blood work, and had me come back in 2 weeks later. That's when he told me he thought it was lupus. All I could do was sit there and cry. When my husband got home and I told him, he just hugged me and cried.

Here it is 6 months later and I'm still here! I'm not under treatment for it other than pain pills, muscle relaxers and Atenolol for my heart. I had to come off the anti-inflamitories due to bleeding. I'm currently under going testing for it. They are suspecting Chron's disease as an over lap to my lupus. I see a Rheumy July 28th.

The first thing I did after my diagnosis in Jan was make a list of all the things I wanted to do with my children. Call it my bucket list if you want, but working towards those goals helps me keep going. It helps me be thankful for everyday that I do have. It took time, but you'll get there too. It took about a week for me and my husband. We decided to live for what we have and not worry too much about the what if's. I still have my list, and I'm still working towards those goals. We plan on one of those things a year so I still have years to get them all done and I do intend to do them. Looking forward to those things keeps me fighting. :)