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New here and have CHF, with family history of Lupus

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Posted 10/29/2007 4:41 AM (GMT 0)
Hi, I am a 30 yr old with cardio mycarditis, "viral" supposedly.  I have a mysterious skin rash that appears on my arms and legs whenever I am sick.  When I was first diagnosed with the chf, they appeared, then supposedly I got better for 2 yrs and now they have reappeared and my heart is in trouble again.  My father and his mother both died from Lupus and a Dr when I was younger said I had a "Lupus tendency" when they couldn't explain a time when I was really ill with joint pain and fever for 4 mths and could barely walk.  My question is, does anyone know of a Dr who is good at diagnosing this in the East TX Tyler area.  Or do you know what other test I should ask my internist to run.  They ruled it out before, but I am seriously doubting that it should have been ruled out.  Oh yeah, I also have fibromyalgia and severe chronic ear infections, and catch everything under the sun.  Does this sound like it could be Lupus related?  Thanks ahead for any responses. Mandy smurf
Posted 10/29/2007 1:57 PM (GMT 0)
Hi Mandy and welcome. I'm sorry to hear about your health problems and sorry to hear that you are having trouble finding a good doc to look into lupus. Lupus can be so tricky because so many of us start developing symptoms before anything shows up in labs and docs seem quick to dismiss things if not much shows up in labs. Based on your family history and symptoms, some of the things you are going through might be lupus related, but as I'm sure you know, lupus is so hard to diagnose because so many illnesses share similar symptoms. You can look at the links in my signature which will take you to the diagnostic criteria. It sounds like you need a good rheumatologist to take a look at you and really listen to your family history and current symptoms. Just because lupus was ruled out earlier in your life does not mean that you can't have developed it now or that you've had it is now becoming more evident. Just know that you are among people who really understand how frustrating all of this can be and how hard it can be to find a really good doctor who will see the big picture. I can't help with a doc because I don't live in your area, but we do have a few people from Oklahoma and Texas here, but I'm not sure if they live anywhere near you. Let us know if you have any other questions and know that we are here for you if you are going through a rough time and need some support. Take care and I'm glad you joined us.
Posted 10/29/2007 1:59 PM (GMT 0)
Hi Mandy . . . welcome to the forum sis, Oh how awefull!! To have lost two family members to Lupus. Hugs for you Mandy. The last link in my signature is "Lupus chapter Locator". Click on that link and find the phone number for the Lupus Foundation of America (LFA) chapter nearest you and call them. They'll send you a doctor referral list for your area. Then prepare very carefully for your Dr. visit. You really need a better symptom list to help the doctor figure things out. It would great if you could get in to see a rheumatologist, but most people need a referral from their primary care physician (pcp) first. Another link in my signature "Lupus Resources" has several posts in it that might help you. Go down to a post which contains tips for new members . . . LOTS of good stuff there. And in the same link, the last post is a form for a sheet you should prepare before you go to a doctor's appointment. Spend LOTS of time making a clear list of your symptoms. Not a bunch of paragraphs but a list. If you read a lot here and in the other links in my signature, you may find that you have more symptoms that you've just been ignoring or didn't realize were part of this. Lupus can attack most any organ and some here do have some heart issues as a result. Some have problems with the mitro valve. Lupus will commonly attack the sack around the heart too. The blood work can go positive and then negative again, so they really can't "rule out" lupus. Many doctors don't even realize this. When you have the rash, take pictures and bring them with you to your Dr. appt. In the lupus.org website (in my signature), you will find a page of information about symptoms and one about diagnosis that might answer some of your questions too. Hang in there!! It can take a long time to actually figure out what is wrong . . . so don't give up. You found a friendly bunch of people here. I'm sure you'll get more responses. Blessings!
Posted 10/29/2007 5:42 PM (GMT 0)
Go see a cardiologist as well. I do not care what your doctor tells you myocarditis can kill slowly or fast. You may want to see a dermatologist too about the rash. Sometimes it takes seeing a specialist for each symptom before anyone bothers to think maybe this is all connected. I also suggest looking into an infectious disease doctor if they are saying your heart issues are viral. A good idea is to take someone with you who will insist they listen and who knows your history to appointments. Trust me it can make a difference. As Rosie said you need a better symptom list- put down everything and say when, how long, how bad. Also get a family history together. It can be a really big deal. We lost several family members to lupus, MCTD, and other AI issues because they went undiagnosed and thus untreated. It took me at least 14 years of being told I was crazy to find a doctor who took me seriously- BUT I didn't have as serious of heart problems as you do (I had one episode of pericarditis) I was in bad shape when I finally got treatment but am doing better now. Also consider that it may be another autoimmune disease not just lupus. Your internist needs to be replaced if he/she believes they can rule out lupus or any AI disease via blood work. My tests are basically negative 99.9999999% of the time. Yet I had so many of the 11 criteria (all but 3) that my rheumy was appalled when she heard how long I had been trying to get help and been told it was all in my head. You know your body better than anyone else. Trust your instincts and fire any doctor who ignores you or tries to blow you off. Doctors work for us, without us they wouldn't have a job. So treat their work as you would anyone who worked for you- but do not treat them like servants they spent years in medical school but that does not mean they are infallable. Humans make mistakes, humans bring preconceived ideas into every interaction. Women seem to be treated like their emotions are the root cause 90% of the time. I wish you luck. Again see a CARDIOLOGIST ASAP your heart is nothing for them to take lightly.
Posted 10/30/2007 1:28 AM (GMT 0)
 Thanks for the replies everyone.  I am going to a cardioligist on Nov. 6, and going to talk to him about the Lupus connection, and if he doesn't refer me, I will have my internist refer me, My internist is taking my heart problem very seriously though, and has always been so good to me about it, and started all the meds for me since the cardioligist I was gonna see didn't start them after the heart cath.  It sounds like I will be sent to another cardioligist to get an ICD device, my internist really wants me to get one, and the cardioligist I am using doesn't do that, so he will probably refer me on. FRUSTRATING!  I took a 2 mth leave of absence from work so I could adjust to the meds, and get this done, and I will have less than a month left after I see cardioligist.  It kinda sux!  I am almost to the optimal  dosage on my meds, my internist and I have been down this road before, and I had a Dr in Houston who was good, so we just decided to go ahead with the meds starting so I can adjust to them.  I found a rheumatoligist in Tyler that I will have my Dr send me to, to see, because of having a very strong family history and having had episodes of "flares" when I was younger and the rash.  Thanks for all the info and advice!  I will keep all of you in my thoughts as well, and let you know how it goes, I know how hard Lupus is to live with.  I lost my Dad to it when I was 12, he had the cardiomyapothy as well, but it ended up attacking his lungs and that is what killed him.  My grandmother I never knew, it attacked her adrenaline glands is what I was told. She was 40, he was 39. 
Posted 10/30/2007 1:51 AM (GMT 0)

Hi Mandy, welcome to the group. It sounds like you have been given very good advice and I am glad to see you are going to see a doctor about your heart. I have CHF off and on. However I suffer from COPD which is causing my CHF. The other thing is I have two doctors fighting over my diagnosis. One says Lupus and one says PBC(liver). Both are auto immune and both can effect your lungs and heart. I have an appt with a new Pulmonologist on the 6th so I'll be interested on his in take about it. Do you have trouble breathing with your CHF? My rheumy was looking at the last hospital report for me and it said I had CHF at that time and I was in a major flare at the time. I'm 50 now but I was in my 30's when all of this started with me.

I'm also sorry about your parents. My husband died when my kids were 15 and 19. I know it has been very hard for them.

Again welcome to the group I look forward to hearing what your doctor has to say.

Posted 10/31/2007 3:11 AM (GMT 0)
Hi Mandy--
They should have tested you for lupus and many more things before diagnosing you with fibromyalgia. Fibromyalgia is a last case diagnosis after all the tests for other things come back negative. My guess is your fibro dx came like mine, a doc pressed on some pressure points and asked if they hurt and then told you you have fibro. Its terrible that they do that without doing the proper testing. Once someone says you have fibro, then everything you feel is because of your fibro. I hope that you can get referred to a good rheumatologist that will run the proper tests to screen you for AI diseases. I have COPD and we had CHF in our family, I've had some atrophy of the heart and have antibodies to my heart. A rheumatologist can check these things. I'm so sorry for your loss and you will be in my thoughts and prayers. Let us know what happens.
Posted 10/31/2007 6:02 AM (GMT 0)

In answer to Okie, I have trouble breathing when I exert myself.  My symptons aren't too bad with my CHF, my most bothersome one right now is the fatigue.  I don't really have any fluid retenion, and no SOB except when I do something. (So I'm fine when I just sit around, sad sux)  I am hoping getting the meds adjusted will help with the rapid heartbeat and shortness of breath.  It seems to be, but I am just tired from the meds right now til my body catches up too.  I'm sorry about your husband, it's just not fair to lose a parent or a husband so young.

Marji, that is exactly the way I was diagnosed with the fibro!  I am going to speak to him about it when I go next visit and insist he delve a little deeper into the Lupus search, with the rash and the pain, and then oh all of a sudden my heart, well, I think he needs to recheck that.  I also had a REALLY bad "flare" for several months when I was teen and couldn't walk or move well at all.  A different Dr then diagnosed me with a "Lupus tendency" he said.  I kinda haven't thought much of it since a rheumatoligist was with my Dr when he diagnosed me first with the heart problem and they said, nope, it's not Lupus.  I am gonna have a little conversation with him about it again now though, and talk to the cardioligist when I see him on the 6th.  I have a echo tommorrow, no telling when they will have results, but when they do, I'll let you all know, thanks a million again for all the response, it helps to have people to talk to.

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