View Full Version : HELP. PLEASE, PLEASE HELP ME.
11-03-2008, 04:01 PM
Hi. My name is Emily. I am a 44 year old single mother of two boys ages 19 and 14. I have been divorced for 8 years now and was married for 16 years at the time of divorce. I have been ill for most of my adult life and never have been able to get answers as to what is wrong with me. I firmly believe it was part of the demise of my marriage. I was always exhausted and tended to save my energy to tend to my boys which I feel is the only accomplishment I have achieved in my life. I was subjected to being called fat, lazy, etc by my now ex-husband...and began to believe. Over the past 5-8 years, I have developed skin problems, everything from psoriasis to excema and the "butterfly" rash across my face. My psoriasis has miraculously cleared over the past 6 months but the butterfly rash has remained along with an occassional out break of excema. Everybody always thinks I have sunburn on my face. It is not sunburn. Although I live in South Florida, I am a homebody, mostly due to lack of energy, and I do not frequent the beach or stay in the sun any longer than it takes to go to my car to pick up my children, etc... About 5 years ago I began to suspect Lupus. Slight joint pain. Swellling of cranium down neck. Butterfly rash. Pain in right side. Repeated UTI's. Kidney stone problems. I had my first kidney stone that stayed in my body for 4 months. I went to the E.R. 6 times in a period of 6-7 weeks and on the last visit to this particular hospital, I was told by the E.R. doctor that it was back pain and I should see an orthopedist. I protested and he told me "if you don't like my opinion, you are more than welcome to go elsewhere". I did. I ended up in another E.R. outside of the county I live in and within 2 hours all the blood work that came back normal at the other hospital suddenly wasn't, the urine that was normal suddenly wasn't and very quickly they discovered I had a kidney stone that wasn't going to pass. I had to have it surgically removed. Ultimately, however, I continued having pain in my right side and it ended up to be AVN.I found out that my left side (although very little to no pain there) was just as affected. 80% of my hips have been affected and I will need total hip replacement surgery in both sides. I began having trouble at my job. I work with autistic children and on one particular day where we had to move our class from a portable to a classroom, I turned beet red in the face and found that I was not really sweating normally. I had never had that happen before and it definitely made me take notice. Ultimately the pain in my side became so bad and my skin reactions from any type of sweating or even the slightest sun exposure resulted in my having to leave a job I loved second only to my family. I was also in the process of obtaining my B.A. degree in ESE Elementary Education and the struggle to get through that took over and this too I had to give up. Through the course of the past 5 years or so I have been to a zillion doctors and in and out of the E.R. more times than I care to remember. At one point, with the onset of my skin problems, I had pus and oozing coming out from behind my left ear which would crust over into a yellow color surrounded by red, inflammed patches. The patches were also presenting on other areas of my skin as well (mostly my neck area). I was told by the Doctor I was seeing at that time that it was because I was "fat". He didn't use the word obese, he used the word fat. "It is because you are so fat" were his words exactly. I never returned to see him again. I started using painkillers for the pain in my side (mostly vicodin...AVN was just diagnosed 3 months ago) and xxanax to help me sleep. Although exhausted, I couldn't get comfortable and couldn't turn my mind off. Sleeping was a luxury for me at best and still is. I started to make the rounds of doctors. Because of the butterfly rash on my face I began to question my primary about Lupus. They ran bloodwork which came out negative. When I would ask what he thought was causing all my problems the answer was litterally "I don't know". About 6 months ago before being diagnosed with AVN I ended up being admitted to the hospital. They did a series of tests ranging from gyn related to g.i. related. They discovered I was post menopausal (something I had been telling drs. for 3 years to no avail as well), I went through menopause without any benefits of medications, etc...because nobody believed me. They also discovered that I had a hyrneia, inflammed bladder and inflammed intestines. They sent me on my way, giving no reason for the inflammation and suggesting prevacid or prilosec for the hyrneia (neither of which has ever worked). About 4 weeks ago I had another reaction (or flare?) that caused my cranium to swell, my fingers to "lock" in a claw like position, with much discomfort, swelling in my toes and the butterfly rash to act up so much so that my face had a waxy sheen, was hot to the touch, and completely inflammed and uncomfortable. I ended up in two different E.R.s, both of which thought I had Lupus but would not run tests as apparently Lupus is not an emergency. I was not admitted either. The first hospital prescribed an antibiotic. The second hospital gave me a bag of solymedrol. I was worried about taking the prednisone as they believe that might be what caused my AVN. I am asthmatic and have been treated with prednisone on and off for the past 15 years. When I was seeing a dermatolgist for my skin problems he also treated me with prednisone. After hearing what both E.R.s had to say in reference to Lupus I called my primary to broach the subject again only to be met with disgust that it was Emily calling again. His assistant called me back to tell me that Lupus is not an emergency. I have an open access health insurance plan and I took myself to a rheumatologist I had seen almost 3 years ago. He initially stated that he too thought it could be Lupus and that it is not always defined by bloodwork. Alot of times the bloodwork produces false negatives. As crazy as it sounds I was glad for the diagnosis. Relieved, ready to move on and do what needs to be done to get well. He ordered a battery of test, some of which I am scheduled to have done, some of which I have had done. I return to him on the 18th of this month for a follow up with the hopes that all tests ordered will be done by then. In the meantime the bloodwork revealed that my Eosinophilia levels were high and my Vitamin D levels were low. Nothing significant was revealed in the x-rays done on my hands, fingers, wrists, hips, or feet. Nothing significant revealed on my hips? I called to question this as I do not want to undertake surgery for nothing significant. (I had two MRI's done on my hips that revealed AVN, something significant). His "nurse" explained to me that he said sometimes X-rays aren't enough to show anything. Why didn't they just do an MRI? He knows what I have been through already. Then I questioned the blood work. Does the results of the blood work indicate Lupus to him? Do I have an answer? Does he still feel that this could be Lupus? His nurse asked him all of my questions and called me back to tell me that the bloodwork revealed I do not have Lupus and he would talk to me when he sees me on the 18th. In the meantime, I am flaring again, pain in my fingers, cranium swollen, face with butterfly rash warm, eyes sunken, joint pain in my shoulders, elbows, etc... How do we go from bloodwork doesn't always reveal to bloodwork revealing that I do not have Lupus? How do I get answers to what is wrong with me? How do I continue to care for my youngest son? How do I continue persuing the will to even live like this? I am so tired, drained, depressed and exhausted from the lack of knowledge and the treatment toward me as a human being. I am tired of being thought of as a hypochondriac. I am tired of these doctors. I am tired of our system and I am just tired of being tired. Do I have Lupus or not? I need answers. Is there anyone who can help me? Any advice that I haven't already heard or tried? I have a series of tests that I am about to embark on. I do not want to go through them if he no longer thinks its Lupus. They will reveal nothing and I will be right back where I started from many years ago. I burned bridges with my primary as I had enough of hearing the disgust in their voices when I called. After the rheumatologist told me he thought it was Lupus, I was hasty in passing that info onto the primary doctor's office and I was none too nice about how I did it. I cannot continue doing this and am ready to just have my surgery for the AVN and let nature take its course on whatever else is going on with me. Help, Please, Please Help Me.
Some of my other symptoms have been a feeling of numbness in my fingers, joints, etc... weakness where I feel I can't lift my arms or legs, pain down my legs, especially around my thighs(could be from the AVN), dizziness and times and I have noticed short term memory loss. I am sure there is more but I am so overwhelmed at this point my brain will explode if I have to think about this for another second.
11-03-2008, 05:10 PM
Welcome to the forum. My name is Kathy and I have SLE Lupus and I will be 50 in December. Your history with the sorry excuses for doctors reads a lot like mine big time. I got diagnosed at the age of 36 and should have been diagnosed many many years before then. I went from doctor to doctor to doctor to continuously be told that I was worrying and stressing needlessly. It was awful and shoot the Lupus very nearly killed me by the time that I got diagnosed as it started affecting my heart muscle and lungs. It was so bad that I had had enough of the doctors not listening to me that I made an appointment with a doctor right out of medschool who was looking for clientel for his new practice. I made me an appointment and I went in to see him. I told him that since I was there to see him for a service and that I was paying him for his services that that meant that I was his boss and that if he could not and would not listen to me and run every damned test that he could think of for Lupus that I would consider him as wasting my time and I would leave and he would not get paid period. My symptoms were: the malar rash, swollen and very red finger joints, swollen very red knees that hurt so bad I thought I was going to go crazy, seriously shortness of breath, bald spots all over my head, sores all in my mouth and nose and ears, my heart was not beating normally and oh it was horrible. He told me right out that when he was a nurse that he worked with Lupus patients and that he would bet his house that I had Lupus and he ordered a bunch of labs to test for that and Thyroid problems. All of the tests for Lupus came back positive and the Thyroid tests were all normal. He literally called me at my house and told me to come on in and he told me that I do have Lupus and that he was sending me to a Rheumatologist with in 3 days. The Rheumatologist told me that I had the most classic case of Lupus he had seen in years and that he believed that I have had it since the age of 5 years old. You see I very well understand how horrible the medical community can be to people, but when you threaten to not pay them, they tend to listen lol more carefully. There are a lot of folks in here that have suffered through the same crap and some are still waiting for answers sadly to say.
I am wondering too from the symptoms that you describe if you have been tested for Pernicious Anemia and Sjogrens Syndrome. I mean it sounds like you have some Neuropathy going on with it all too and the memory loss. You also state that you also have the weakness and the fatigue. These all sound like it could be PA. I also think that you should be looked at very closely for Lupus due to the Malar rash and the other symptoms. I am wondering if you have a problem with sores in the corners of your mouth and problems with your tongue, like a red smooth spot in the middle of your tongue with pain. This could indicate Pernicious Anemia too and they should do a test to see if you are Vitamin B12 deficient.
I think you have to really assert yourself to the doctors the way that I did as you know there is something odviously not right and you know your body much better then they do. Also there is such a thing as being sero-negative Lupus. I hope that you can get some answers hon.
There are a lot of good people that come in here and they will probably have some good answers to help you too. Please keep posting as I care very much about you and what you are going through.
11-03-2008, 05:25 PM
I am so sorry to hear that you have been so mistreated by doctors for so many years. I wish that I could say that your case is unique. Unfortunately for many Lupus sufferers, your case is more like the norm. We have been dismissed, told that our symptoms are all in our heads, told that we were hypochondriacs, treated like lepers and, generally, disliked. The biggest problem is that your symptoms could very well be Lupus. Unfortunately, they could also be indicative of some other auto-immune or connective tissue disease. It appears that every doctor you've encountered has not been willing to take the necessary steps to at least tell you that much.
First, your symptoms are very real and do not let anyone tell you differently. They are real and should be taken seriously!
Doctors are loath to make a lupus diagnosis and for many of us, getting this diagnosis can take up to a year of tests, re-tests, symptoms escalating, some disappearing, new ones showing up, etc. My diagnosis took a year and by that time, I was bald from hair loss, I could barely move due to joint inflammation, I had ulcers in my mouth that were the size of oranges, I was so fatigued that I couldn't get out of the bed and the depression.......I considered suicide more than once.
So, here again, you are not alone. Your treatment by the medical community, your symptoms, your emotional state....we truly understand because we have been where you are!
I try to tell newly diagnosed patients (or those awaiting diagnoses) not to put all of their hopes into finally getting a diagnosis. It is a lengthy and very difficult process. As I stated earlier, it may take months or even years for doctors to piece together the symptoms in order to diagnose this complex disease accurately. Making a correct diagnosis of lupus requires knowledge and awareness on the part of the doctor. If the doctor lacks that knowledge and awareness, he (or she) would rather place unfair labels on the patient than to admit their lack of knowledge. Since you have open insurance, it would behoove you to find a rheumatologist who specializes in auto-immune disorders. Take all of your lab results to that rheumatologist and DEMAND that you be treated for your symptoms while awaiting a final diagnosis.
One of the problems with making a Lupus diagnosis is that there is no single test that can determine whether a person has lupus. However, several laboratory tests may help the doctor to make a diagnosis. The most useful tests identify certain autoantibodies often present in the blood of people with lupus. For example, the antinuclear antibody (ANA) test is commonly used to look for autoantibodies that react against components of the nucleus of the body's cells. Most people with lupus test positive for ANA; however, there are a number of other causes of a positive ANA besides lupus, including infections, other autoimmune diseases, and occasionally as a finding in healthy people. Also, there are some rare cases of a person having Lupus with a negative ANA. The ANA test simply provides another clue for the doctor to consider in making a diagnosis.
In addition, there are blood tests for individual types of autoantibodies that are more specific to people with lupus, although not all people with lupus test positive for these and not all people with these antibodies have lupus. These antibodies include anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and anti-La (SSB). The doctor will also use these antibody tests to help make a diagnosis of lupus.
Some tests are not used as frequently, but they may be helpful if, after all of the above tests, the cause of your symptoms remains unclear. The doctor could order a biopsy of your skin or your kidneys (since you state that those body systems are affected). Some doctors may order a test for anticardiolipin (or antiphospholipid) antibody. The presence of this antibody may indicate an increased risk for blood clotting and increased risk for miscarriage in pregnant women with lupus. Again, all of these tests merely serve as tools to give the doctor clues and information in making a diagnosis. The doctor should look at the entire picture: your medical history, your symptoms, and your test results, to determine if a you do or do not have lupus. Until this is done, Lupus should neither be a diagnosis nor should it be dismissed!
Other laboratory tests are used to monitor the progress of the disease once it has been diagnosed. A complete blood count, urinalysis, blood chemistries, and the erythrocyte sedimentation rate (ESR) test can provide valuable information. Another common test measures the blood level of a group of substances called complement. People with lupus often have increased ESRs and low complement levels, especially during flares of the disease (ask your doctor about these tests). X rays and other imaging tests can help doctors see if any of your organs have been affected by Lupus.
Again, I think that it is extremely important that you find a clinical immunologist ( a doctor who specializes in immune system disorders). Until you are able to do this, you may just continue to get the run around from these ignorant doctors who do not care about you or you symptoms. Your doctor should Lupus provide you with a treatment plan that is tailored to your individual's symptoms and your individual needs. As Lupus is a disease that is replete with remission and relapse, your treatment plan may vary over the course of your lifetime. Your doctor should be willing to listen to you and to take you seriously so that your treatment plan can always help you to manage your disease and to maintain some semblance of a normal lifestyle.
Until you find a competent rheumatologist, please come to us with any questions that you may have. Also, we are here to provide you with information, support and to let you know that YOU ARE NOT ALONE! We cannot give you a diagnosis, but we can certainly educate you until you get one!
I wish you the very best!
Peace and Blessings
I'm Rob, and I was diagnosed with SLE back in 2004. I can't add anything from a technical standpoint, as Kathy, and Saysusie have really given you some solid facts, and good advice as well. Rather, I'd like to tell you that you are not crazy, you ARE NOT a hypochondriac, and you have symptoms, very real symptoms. I cannot diagnose you, but I can tell you that I believe you when you describe the symptoms that are wreaking havoc on your life. You have been mistreated terribly by so-called medical professionals. Telling you your problems are because you "are fat". I'm sorry you had to hear such garbage when all you wanted was help. It's not right, it's not fair, it's a travesty.
There are so many people like you who just want someone to listen. Someone to take them seriously. To spend every hour from sundown, to sunrise alone, and scared, is awful. To seek an answer after all that fear, and then be ridiculed, and told it's all in your head, is a terrible blow to a persons sense of self worth. It's easy to lose hope.
I, was lucky. My diagnosis of Systemic Lupus happened pretty quickly in comparison to others here. Even more unusual because I'm a guy, and only around 15-20% of people diagnosed with SLE are men. Wanting a diagnosis does not mean you are somehow "sick" mentally, or seeking attention. It means that you know something is not right with your body. You know these strange things happening to you are not normal. There has to be a reason for them, and you need, and deserve an answer. You can't fight an enemy without first knowing what that enemy is.
I know you are near the end of your rope. I know how it feels to have your head "ready to explode". The pain, the pressure to get an answer, and the ignorance of so called doctors and specialists can be overwhelming. Just know this- You ARE NOT alone. Others are going through, or have gone through what you are experiencing. There is not one single person here who does not understand what you are going through. Nobody here will ever call you a hypochondriac. And you do not have to have Lupus to be accepted here. Many of our members are without a diagnosis. Please know that this is a place of acceptance, and understanding. I know the internet can be a place full of cold, faceless words. But this little corner of the net is not like that.
Welcome Emily, I'm glad you're here.
11-03-2008, 06:28 PM
Thank you both for responding. I totally feel for both of your plights as well and appreciate your words of kindness and support.
Kathy, I did some research into both of the other diseases you mentioned and although I do suffer from an occassional cold sore in the corner of my mouth (like right now) and bumps on the back of my tounge, I do not believe that either disease would be enough to explain some of the other symptoms I am having and agree with you that Lupus needs to be explored further.
I do get headaches. I have to sometimes say the letters of the keyboard outloud so as I type I can get my fingers to move where I want them to and even with this said I am not convinced that nuerology would explain all the symptoms I am having. In fact I am convinced that when I go for my nuerological exam next week, just like every other test, it will come back fine.
Part of the problem is that nothing seems to be consistant. I have major hair loss. I have had that for at least 15 years. It comes out in the shower and in the hair brush in clumps but I haven't had baldness in many years. I feel the swelling all over my body, especially the joints, but my fingers are not red nor are my knees despite what I feel. There is nothing to show these Doctors, only what I can tell them I am feeling.
I am not sure how much strength I have left to deal with all of this. I am a burden to my family and my friends. No matter what they say, I know the truth. I am a burden. I have had suicidal thoughts and even committed myself to a psych ward several months back to no avail in getting any answers either medically or pyschologically. I would, however, not take my life for the sake of my family. I don't ever want to be that selfish and I can't think of a bigger burden placed on those who love me. Being the loved one left behind who has to live with it has to be the worst thing to deal with; I already feel like a burden so I would not make it worse with an act such as that.
I am so disturbed by the reactions of the Doctors and our health care system in general. I am not sure I have too much fight left in me but please keep posting as I will take the suggestions I can use and feel fit my needs and try my hardest to make them work for me.
Thank you both again so much for your suggestions. I took a few things from each and will be checking into what you had to say with my Doctors in the coming weeks.
Please keep the posts coming as I am not quite ready to give up just yet!
11-03-2008, 06:32 PM
You have brought me to tears. Thank you so much for your words of wisdom, concern, and thoughtfulness. I know I am not alone and I think in someway that makes this all the more frustrating. You have made me feel better nonetheless. Thank you. Thank you. Thank you.
We must have been typing at the same time Emily. Your reply just suddenly appeared! I'm glad you found this place. Sometimes, things here are very serious, like when I read your story and responded. Sometimes this place is good for advice and comparing notes, and sometimes it's good for a laugh, and just visiting with friends. I've recieved so much understanding here, I honestly don't know how I went so long without it. I never spoke to anyone other than my Dr./Rheumo, and my mother about Lupus. I went for almost three years, basically silent. To come here and find people who had gone through the same things I had, really changed my attitude, and outlook for the better. I decided to stick around, and now I'm here every day. Just know that you are welcome here.
11-04-2008, 05:45 AM
I woke up in full blown flare again this morning. Butterfly rash prominent, joints aching, major headache, fatigue, weighted down, cranium and lips swollen down to back of neck. I hate feeling this way. It angers me so that there are so many people going through the same thing and that even with that phenomenon Doctors are in denial and people have to go through so much aggravation to get a diagnosis. With this much info out there on Lupus and so many affected why aren't our medical professionals standing up and taking notice? I read somewhere that more people are affected with Lupus than MD, MS, etc...more people are affected with Lupus than those diseases that they actually have telethons for and nobody is noticing...I am sure I do not understand. I checked into local support groups where I could physically go to be with others who are in my situation. The only thing I found is the local hospital that I have been to so many times offers a once a month meeting but they leave no phone #, no contact, etc... I am going to explore further but I don't hold out much hope.
11-04-2008, 07:18 AM
I am glad that a lot of folks are posting with great information for you. I am sorry you are feeling so bad this morning. I understand very much your frustration, because I went through a lot of the very same things that you are going through with the stupid medical community.
I hope that you were not offended when I told you that they should also look and test you for Pernicious Anemia by doing a blood test to see if you have a vitamin B12 deficiency. You see I can't help but wonder how many people end up with PA after having Lupus for a long time. I believe that you definitely have Lupus and have had it for a long long time. Lupus affects every part of the body, but at different times and like in my case I believe that it damaged the Parietal cells in my stomach and intestines and has caused me not to be able to absorb vitamin B12. There are some others that come in here that have this same situation with their Lupus. Lupus is a nasty disease and can do so many ugly things to you.
I don't understand why there are not very many support groups, but there are a lot of us that are trying very hard to get the doctors and the community as a whole to look at how prevalent Lupus really is and how bad it is. It has gotten better then it was say 30 years ago when I started my round of doctors. I mean they would not even consider that Lupus just maybe inherrited. I have a younger sister with it too. My Rheumatologist told me right out that the CDC has ruled that they now believe that Lupus is an inherrited disorder.
I seriously hope that you get in contact with another Rheumatologist and that they will listen to you. I think if you call the different Rheumatologists that specialize in the treatment of Lupus they will probably listen to you. The doctor I see is in Valdosta and I see that you live in south florida, so that would be to far to travel to see him and it is sad because he is a really good doctor and he would listen to you. I hope that you find a doctor that will listen to you and help you out and find out what is going on and put you on treatment.
11-04-2008, 07:56 AM
I was not offended by anything you said. I was grateful for all the info you have provided and you CAN help and already have with just the few exchanges we have shared. The best thing you could say to me would be I seriously doubt you have Lupus, why don't you check into this or that instead. Never did you offend me:).
With that stated, I do believe you might be correct about PA and Snojerdens (sp?). I just don't think that they in and of themselves are the direct cause. I believe that is how you feel as well and have indicated that.
I am concerned right now. I am having trouble breathing. I feel swelling down to the middle of my back. My son says it is slightly red. I am eating pineapple as they say it helps with the inflamation (i have had some success with pineapple...just becareful how much you eat because of the acidity level) and my wrists are hurting real bad.
There is nowhere to go. I am not going back up to an E.R. I cannot bear the thought of calling the doctor's office, etc... I do have an appt. with another rhuem. on the 7th who is located about an hour and half away from me. I have been assured by their office that he is "wonderful" and "will listen to me". Needless to say, I won't be convinced until it happens.
Has anyone ever thought about contacting their local news, 20/20, the Oprah Show, or anything that would bring national attention to Lupus? If I had the strength, on this election day, I would stand outside my local hospital with signs picketing for someone to help me while I shake, sweat, swell, and speak oddly.
I have decided however, that I will not live dying. If I can't get help then I will live each day living and not dwelling on what is going on with me. Each time I plead, beg, visit a doctor all I am doing is living dying. That is not how I want to go out if that is indeed my fate if this is left unattended. I want to die living not live dying...make sense???
In any case, no offense with anything you have said. This is a very strange thing for me- to be reliant on a website whose inhabitants I can feel energy and concern and support from but whose faces I can't look at, etc... Nonetheless, the three of you have been wonderful, keep the communications coming and don't stop what you have started....hats off to all of you!!! Thanks so much,
11-04-2008, 08:39 AM
I would love to get ahold of 20/20 and Oprah and even CNN, but I don't know about how to go about it. I think that I may pitch this to Saysusie and Rob and see what we can come up with. It would be definitely something to seriously consider.
I do not want you to die from this illness and I sure hope that this Rheumatologist that you are going to see helps you and listens to you and starts you on medications. One of the top of the line medications is Plaquenil. Ask this doctor if they are willing to put you on it and see if it helps. Keep in mind though that Plaquenil takes up to 5 months to get the full benefit of the medication to be in your system. See if they will also put you on an NSAID for the inflamation. I hope that he orders a new MRI for your hips as well. I will keep you in my prayers and please post and let us know how your visit goes. I care very much about what is happening with you as no body should have to be sick and suffer.
Any questions you may have for me, please feel free to post or email me or private message me ok.