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Just found out I have Lupus

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Posted 12/13/2008 4:22 PM (GMT 0)
I just found out I have lupus yesterday. The thing that really bothers me is I have probably had it since I was thirteen. I have had seizures for 8 years, kidney problems for 13 years, liver problems for 13 year,heart problems for 3 years, untreatable blood pressure, my hair is falling out, many miscarriages, joint pain, fatigue, and that butterfly rash on my face comes out everytime I get in the sun. I have been to a lot of doctors over the years, and they never tested me. Now that I have had lupus for 20 years untreated, I have a lot of questions. My doc said it probably is the reason for all my organ problems including my seizures(brain). I know very little about lupus, and from what I understand, it can be treated? I just wonder what they can do at this point. I don't see a specialist for 3 months, so I have a lot of questions. I would appreciate your feedback.
Posted 12/13/2008 4:58 PM (GMT 0)
Hi Rara, welcome! You will find this is a great place for support and to vest. Everyone here is very kind and encouraging.

I am sorry to hear you have been battling this disease for so long. I was dx in 2005 but think I have had this disease since I was a teenager, it just didn't really rear it's ugly head until the last several years. It's so hard to dx, unfortunately it sometimes takes a while. There doesn't seem to be a gray area with doctors, they only look at the black and white. Since there is not one single test to dx lupus the doctors have to piece it together kinda like a puzzle. It's very frustrating when it takes a long time to get answers though, especially 20+ years.

You mentioned you don't see a specialist for 3 months. Who gave you the dx of lupus? Did they start you on a treatment plan?

There is a message thread called lupus resources, take a look at that and also visit www.lupus.org both places have a lot of good information about lupus.

Please feel free to ask more questions.
Posted 12/13/2008 5:09 PM (GMT 0)
I just wanted to say welcome to the forum. There are several drug options used to treat the symptoms of lupus. It's a shame that many people suffer so much before a diagnosis can be made. You'll findthat there are alot of knowledgable people here who can offer alot of advice and encouragement. Hang in there! God bless you, Judy
Posted 12/13/2008 5:28 PM (GMT 0)

Believe it or not, my GYN figured it out, because I had the butterfly rash on my face, and 11 miscarriages, he ran ANA test and a bunch of other test. You would think between my neurologist, cardiologist, or the other 50 doctors I have seen over the years, someone would have tested for it. My GYN wants me to see the Rhuemotologist for treatment, and then have them consult with my other doctors. I have been diagnosed with MS, Fibromialgia, Hemiplegic Migraines, among other things. After reading about Lupus, and the short talk I had with my Doc, it makes more since than anything else, especially since I have so many issues at 33. I will be happy to see the specialist though so we can establish a plan of treatment.

Thanks,

Amber

Posted 12/13/2008 5:45 PM (GMT 0)
Bless your heart Amber ((((( hugs ))))). We are close in age, I am 37 and have had 2 miscarriages. It sounds like you slipped through the cracks with all of your doctors, that is so sad, you have suffered all these years and no one "really" listened to you and your symptoms.

I really hope the specialist, is just that... a specialist in Lupus. It may be helpful for you to make a list of ALL your symptoms, when they started and if any helps them, any medical procedures you have had and the results, copies of lab results, pictures of your rash if it's not visible all the time, family history of AI diseases, etc. Your first visit with the rheumy should last 30 min - 1 hr. The doctor should examine all of your joints, your skin, listen to your heart and lungs and ask you a TON of questions. Hopefully it won't take him/her long to make a correct dx.

Hang in there, hopefully you will have some answers soon!
Posted 12/13/2008 10:02 PM (GMT 0)
Amber, your case sounds kind of like mine. At 14 I had enough criteria to be dxed but it wasn't until I was 28 that the diagnosis came. You have had doctors believe you over the years that something was wrong which is different than me- I was told it was all in my head. One doctor even claimed I somehow altered my blood work with my mind. If you look at my signature you will see a lot of the potentials for treatment. One of the first drugs that should be prescribed is plaquenil. It takes a long time to do anything but is one of the safest and most widely used. Prednisone acts fastest and used to be the only treatment. It is still the go to treatment when things get ugly but it can affect bone density and other stuff so doctors generally try and use it as little as possible. I also take imuran and cell cept. Imuran is safer than cell cept and can be taken in pregnancy- I have a 7 month old who is healthy and thriving to prove it. Plaquenil is also safe in pregnancy. I have had 5 miscarriages and 5 pregnancies that made it far enough to have a baby. I have 3 children living. What happened to my other 2 children had nothing to do with my lupus and more to do with medical incopetence and stupidity on the part of doctors (calling me a parinoid young mother instead of trying to discover what was wrong).

Make sure the rheumetologist you see is a lupus expert. A rheumy who sees a handful of lupus cases is not an expert the majority of their practice should be patients with lupus and other autoimmune diseases that are similar like mctd, uctd, ra, sjogrens, etc... If their patients are almost all elderly then they are not a lupus expert. I would call and ask to get on the rheumy's cancellation list so that if someone else can't make an appointment you get theirs. Trust me most doctors have one. Call once a week too cause sometimes an appointment will open up sooner. A good rheumy is often difficult to get into the first time. I was lucky, my rheumy had a cancellation and I got in less than 2 weeks after I called (I called the day her other patient called to cancel and took the appointment in a heartbeat). I love my rheumy, she has literally saved my life several times. If you were in MI I would recommend her to you. She is awesome.
Posted 12/14/2008 12:32 AM (GMT 0)
Hi Amber. I'm so sorry that you've suffered for so long. It's such a shame that medicine hasn't found an easy way to diagnose Lupus. I agree with Redrose that you need to call your new rheumy's office periodically for cancelations to start treatment. Many treatments can take a few months to begin working, so the sooner the better. There is a great book called "The Lupus Book" by Daniel Wallace, MD. I've had the book since I was diagnosed with systemic lupus and I still use it for reference. Welcome to our forum Sweetie. (((Hugs))) Love, Butterflake 

Posted 12/14/2008 3:36 AM (GMT 0)
Hi Amber and welcome. I am so sorry to hear all that you have been through over the years and that it has taken so long for someone to finally figure out the big picture of what is going on. Sadly, it seems to happen to a lot of lupus patients. I don't have a lot to add to the great info that others have given you. This is a great forum where we are very supportive of each other and share our own experiences and anything we have learned along the way. I'm glad you joined us. Please ask any questions you have - there can be a lot to take in when you first learn about your diagnosis.
Posted 12/14/2008 1:46 PM (GMT 0)

I want to thank all of you for your suggestions, and support. There is something funny about being diagnosed with lupus. It has really bothered me. I guess I just didn't see it comming. The MS diagnosis was no big deal, but I expected it. Honestly Lupus scares me. The only person I have met with lupus was a 24 year old girl who had about six month left to live. Lupus had eaten her heart and kidney's. I bunked with her in the hospital for about a week while they tried to figure out what was wrong with my heart, lol!

But despite my "scarry" idea of what lupus can do, I have some hope that a good doc can make all the difference. Plus it would be kinda nice to be able to put all my health issues under one name. I have Lupus, instead of a list of 10 things.

Thank you again for your suggestions. I will make sure I find a doc that specializes in Lupus, I would have mad an appointment with anyone because I did not know better! And I will write down every little symtom before I go, so I don't miss something.

Also, I have a good friend with Chrones Disease. She said once you have an autoimmune disease, you are apt to get other autoimmune diseases. She has 3. Is this true? Thanks again.

Amber

Posted 12/14/2008 5:25 PM (GMT 0)
Hi Amber. One of the interesting things about lupus is that no case is alike. We all have flares with pain and fatigue as the most common symptoms, but many lupies go their entire lives without having any organ involvement. As for the autoimmune diseases, there is a slightly increased incidence of having more than one, but I think the number is very small. Feel free to ask us about anything, or even if you just need to vent. We are all here for each other. Love, Butterflake 

Posted 12/14/2008 5:32 PM (GMT 0)
One way to find a lupus-knowledgeable rheumy is to check the lupus.org website and find the closest local chapter. Then contact that chapter and see what doctors are active with the area. These are they guys you want to see. I'm not sure that I believe AI diseases 'flock together"... I suppose it can be argued either way, but the symptoms for so many of these all run together, and definitive tests for many of them don't really exist. (See 4 of 11 in link below.) So I tend to believe that a multiple dx isn't really much different than a single dx... I'm glad you've joined us here, it all seems so much easier once we find others who understand "from the inside out". Cheers,
Posted 12/14/2008 8:12 PM (GMT 0)
Hi Amber,

 

One more welcome to you!  Wow, I was reading your postings and you have so much going on.  No wonder you feel weird and finding it hard to understand.  I would be feeling that way too.  MS and Lupus.  Bless your heart. Have you been to the MS forum too?  How are your MS symptoms right now?  What diagnosis did you get for your heart issues?

 

It is true that you can have more than one AI disease. I do.  But all of mine are cousins of lupus.  So I have more of an MCTD diagnosis. (mixed connective tissue disease).  Raynauds, Sjogren's, Antiphospholipid Syndrome. 

 

Like the others have mentioned, you can ask any questions you want/need.  We're here to support you and do our best to help answer questions.

 

Blessings,

Ginny

 

 

 

 

 

Posted 12/15/2008 3:17 PM (GMT 0)

I found a Rhuemtologist that's primary issue is Lupus and autoimmune diseases. My appointment is Jan 28th. All I can say is thank you to everyone for thier advice. I would have gone to some doctor that specializes in bone density or something if you didn't tell me to look for a doc that specializes in autoimmune. I will keep you posted with what is going on.

THANKS AGAIN!!!!

Posted 12/15/2008 5:05 PM (GMT 0)
Great news Amber!

Posted 12/16/2008 2:27 AM (GMT 0)
WOW, that's fast!!  I hope it goes really well for you.  Let us know if you have any questions in the meantime, okay!
Posted 12/21/2008 7:24 AM (GMT 0)
Hi Amber,

I am relatively new to this forum too. I am 32 years old, am in diagnosis limbo and have been for the last five years. I have to say that being a part of this forum has been crucial to my emotional health. I love it here because I know that I am not alone. I look forward to hearing about your rheum visit in January. Good luck!!

Love,

Nicole
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