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lrs76
08-06-2011, 01:09 PM
I am very happy to have discovered this site. After years of wondering what was going on with my health, I finally feel like I have some answers.

I received a lupus diagnosis about a month ago from a great rheumatologist who started me on plaquenil, which I hope starts working within the next month or so.

My question to the rest of you - did you get a second opinion when you were diagnosed? My first rheumatologist visit was with hands down the best doctor I had ever seen - she spent three hours with me and the second visit where I received the diagnosis was about three hours as well. She studied under lupus experts at UCLA, and I really trust her opinion. However, my family kept encouraging me to get a second diagnosis, which does make sense, given that lupus is a serious illness. I felt guilty doing so because I am perfectly happy with my rheumatologist and had accepted the diagnosis but thought it would help my family accept it better if I got a second opinion. I figured the second doctor would probably confirm the diagnosis, so it couldn't hurt. I saw this doctor a few days ago. Before she even looked at my information, after I told her why I was there (to get a second opinion on lupus treatment) the first words out of her mouth were "if you even have that at all". She knew I was coming in for a second opinion and that I had lab results already, so she only gave a very brief exam. She said she really hesitates to give a lupus diagnosis as it can have serious consequences (like not being able to get life insurance) and thought I should have my thyroid checked as that could potentially explain a lot of my symptoms. She doubted the lupus diagnosis despite a positive ANA (although only 1:80), arthritis in back, neck, knees, spine, bursitis in hip, malar rash, photosensitivity, and a list of other things found by the first rheumatologist. I guess since my blood work was relatively normal (except for slight anemia, positive ANA, and high c-reactive protein) she was dismissive of the long list of clinical symptoms found by the first doctor.

I know it is very common to take a long time to get a diagnosis and that many doctors hesitate to give it - but just wanted to see if it is common to get another opinion - even if just on treatment. It has taken about five years of having various symptoms and seeing numerous doctors before getting to this point, so I was actually very relieved when I found out and the second opinion put a small seed of doubt in my mind. However, my gut tells me to just stay with the first opinion so I think that is what I will do, even though my husband keeps telling me I should get a third opinion.

Before a month ago, I knew very little about lupus. Two people at work also have it, but I don't have much opportunity to talk to them about it, so I hope to meet some more people who can relate to what I am going through.


Anyway, sorry to ramble, just wanted to say "hi" and I look forward to meeting some new people :-)

Elo
08-06-2011, 02:26 PM
Hi lrs76!
This might kind sound of harsh, but please hear me out, i'm not trying to be mean.
The thing you have to realize, is that many people go through doctor after doctor like the second one that you saw, people who barely glance you over and think you're just overreacting, or it's not that big of a deal. Honey, you are so lucky to have found a rheumy who diagnosed you!
It's understandable to want to get a second opinion, but if you're sick and in pain for so long...does it really matter what the name of it is, as long as you know it's something, and you can try to do something about it?

Honestly, what I would try to do is just do some research of your own. If you look online and at other peoples stories on here, and think to yourself, that sounds like me, or you feel a certain connection with Lupus symptoms, then I really don't think you need another opinion.

If you still feel kind of nagging, like you're not experiencing a lot of this... then maybe talk to the rheumy you already have.

I'm no doctor..umm..but I don't think that thyroid problems would cause you joint pain or swelling..:/

Ooh, ooh! I know! What if you did get your thyroid checked? I took the test myself - just a simple T4 total. Not too expensive, just a quick blood test. If it comes back normal or whatever, or wouldn't explain your symptoms, maybe you can just skip over that doctor as being kind of a quack, and be happy you found such a wonderful one in the first place (:

Anyways, this is all just opinions and my thoughts. I actually haven't been diagnosed yet... I'm waiting to be though. I've gone through 3 horrible doctors, and now i've finally found one good one who took me seriously. Researching online, I found out about lupus, and I really felt like that was what I had. Still trying to find a diagnosis though - besides being told I have an autoimmune disease.

Anywho!!! Welcome to the forum and the family! :D I'm glad you found us - i can understand not wanting to have Lupus, since it is serious, but like we sometimes say around here... if you're already sick, what's it matter what it's called, as long as it's treated? (That being said, everybody still hates getting diagnosed)

running girl
08-06-2011, 03:22 PM
Welcome Irs76,

I have a great rheumy who feels strongly I have lupus. She has put me on Plaquenil and it seems to be helping with my symptoms. She is caring and calls to check in to see how I am doing.

Recently I was at my family doctor for an unrelated issue and he looked over the report and lab tests that she sent to him and he said there was nothing wrong with me. He said she is nuts for treating me and that there was ABSOLUTELY nothing wrong with me. I asked him what he thought my symptoms were caused by and he said "What, you want to be sick? You want to be on Medication for the rest of your life? There is NOTHING wrong with you!"....nice, what a jerk. Strange thing is it was him who sent me to her. I was seeing him about my skin problems, when I developed Raynaud's and my ana results were high.

Anyway, I do trust my rheumy but I now ask for copies of all of my test results and reports. I do a lot of reading and on-line searching. I ask lots of questions and go with my gut. AND I look to the real experts for information. The real experts are the folks on this site. They are the ones I'm learning from. What a great group. Thank you!! and Welcome

sharpiessave
08-06-2011, 03:44 PM
Hi and welcome!

I totally understand you family wanting you to get a second opinion; mine did too. The people we love soooo don't want us to have to deal with something chronic like lupus. What Elo said is right on the money. Most of us go through several doctors until we get lucky, like you, and find one who will take the time to try to diagnose and treat our ridiculously complicated and ever-changing symptoms.

It sounds to me like you've already made your decision. Of course you don't wanna have lupus; lupus sucks. So having a doctor tell you you might not have it is appealing. But I think your gut is telling you to go with your first doc. And it's so important that everyone, but especially those of us with autoimmune diseases, listen to our bodies.

It's also quite possible that your first doc will change your diagnoses will change with time and research. I went from an "unspecified autoimmune disorder", to lupus and Sjogren's, and now my Rheumy is building a case for Mixed Connective Tissue Disease.

What I'm trying to say here (through the brain fog) is that these illnesses are so incredibly complex, with many overlapping on top of each other, and I wouldn't trust the best Rheumatologist in the world to diagnose me in 20 minutes.

Running girl is completely right. You have found what I consider to be the most knowlegable collection of lupies on the web. Most of us don't have degrees in medicine, but our combined experiences, as well as this awesome sense of family, make WHL a big part of my healthcare team.

tgal
08-06-2011, 05:35 PM
First let me welcome you to WHL. I am so glad that you found us. Like the others before me I have to agree that you actually were really lucky. Most of us go through doctor after doctor trying to figure out what is wrong with us! We hit a place we we wonder if we are crazy and lazy but no one is helping. When we finally find a doctor who is willing to help us and name our disease it is complete relief! it is scary but there is relief because the lazy thing isn't true (the crazy one is but just in a different way LOL).

I am not a doctor and I cannot tell you what to do but I will tell you that getting a Lupus diagnosis is hard. Not getting a Lupus diagnosis is easy. Many doctors will give you every other diagnosis and ignore the possibility of Lupus. I know your family means well but if you found a doctor that you are comfortable with that doctor I would say trust your gut. Remember that your family is made up of healthy people and, no matter how much they love us that can't understand what is really going on. When we find a doctor that "gets us" we need to hang on with both hands!

lrs76
08-06-2011, 05:59 PM
Hi, Elo

Thank you so much for the response. You are right and I completely realize I was lucky to have found a great doctor. I went through many years of having some doctors barely glance me over before finding a primary who believed me and a rheumy who took the time to really evaluate me. I was actually very relieved to get the diagnosis - like you said, the fact is that I haven't been well for a while and now have someone who will help me get better and I shouldn't let the second doctor's opinion sway me. But I willl ask for the thyroid check just to rule it out :-)

I am sorry to hear that you also had bad doctor experiences but glad to hear that you too have found a great doctor. I hope you get an answer soon - it is frustrating being in limbo.

I appreciate the advice and the welcome.

:-) lrs76

lrs76
08-06-2011, 06:27 PM
Hi, running girl

That's great to hear that you are feeling better with Plaquenil - I have heard great things about it and do feel like it has started to help somewhat but know that it can take a couple of months to really take effect, so I have another month to go. I have a co-worker with lupus, ra, and sjorgrens and she said she loved being on it but had to stop because it affected her eyes, but that she would be still taking it if not for that.

That must have been really frustrating to endure having your family doctor negate the rheumatologist. It's interesting how doctors will do that. I saw a GI doctor the other day and when I told him I had been diagnosed with lupus he asked if my doctor was sure I had it. That's awful that your doctor implied that there is nothing wrong with you when you clearly know that is not the case. However, it is good that you have a great rheumy.

Like you, I have also learned to start asking for copies of all of my test results. It was actually because I had done so that I was able to get into the rheumatologist. I was looking over results that a neurologist had ordered - she had told me to follow up with my primary and he had copies, but she had also said the labs looked normal other than that I was slightly anemic. I figured my primary would call if there was anything really wrong, but never heard anything so I forgot about it temporarily. About a month or so later after I had not been feeling well, I took out the lab results and really started looking at them. I had to lookup what most of the tests meant and that was when I noticed that the ANA was positive and 1:80. In my research online, I kept seeing positive ANA linked with information on lupus, so I went to see my primary (who had not received a copy of the results) and he agreed that it needed further evaluation and then that opened the door to the great rheumy. However, if I had just taken the results from the neurologist who said the labs were fine and had not looked them over more thoroughly, it could have been a lot longer to get a diagnosis. I think I am going to need to start a binder to keep all of my paperwork organized :-)

How has the lupus affected your running? I am assuming you are a runner based on your name :-) I was into running for about ten years and then it tapered off over the past ten years but I keep hoping I can get back into it. Maybe once the Plaquenil kicks in and my joints are better, I might be able to start back up again. I started Pilates two months ago and really think that has helped my joints.

I agree with you - the experts are the people on this site who are living with lupus and other autoimmune disorders.

Thank you for the warm welcome!
:-) lrs76

lrs76
08-06-2011, 07:18 PM
Hi, sharpiessave

Thank you for the response - your words have really helped put my mind at ease :-). It is true that loved ones come from a good place and actually seem to have a harder time accepting it than we do. I hit the jackpot on my first rheumy, but had also gone through several primary physicians and two neurologists (after having had MS workup which was fortunately ruled out) before getting to a rheumy. I had one doctor at Kaiser tell me that they had done a lot for me already when I told her that I still wasn't feeling better. Another told me I should go to stress management classes and another suggested deep breathing. Not to say those suggestions were bad, but the doctors at Kaiser didn't want to investigate further. I finally decided that I would switch to HealthNet during open enrollment last year with the hope of finding a primary that wouldn't think I was a crazy hypochondriac. Kaiser was very good when I was healthy and I think it would be fine if I went back after getting the diagnosis, it just wasn't so good while in limbo.

I agree with both you and Running Girl -lupies will collectively have the most knowledge. This is such a great resource as well as a great group of people.

lrs76
08-06-2011, 07:27 PM
Hi, tgal

Thank you for the welcome - I have been a reader of various forums for years but this is the first time I have ever participated. I appreciate how welcoming this group is and look forward to getting to know people better. You hit the nail on the head - I was so relieved to finally have an explanation for all of these seemingly unconnected symptoms that I didn't really have a problem accepting the diagnosis. I think I will just go with the first opinion and keep holding on with both hands :-)

steve.b
08-06-2011, 08:12 PM
hi lrs76,
welcome to our cyber family.
i am happy to see you have fitted in so well.

you are with good friends.

running girl
08-06-2011, 11:58 PM
How has the lupus affected your running? I am assuming you are a runner based on your name :-) I was into running for about ten years and then it tapered off over the past ten years but I keep hoping I can get back into it. Maybe once the Plaquenil kicks in and my joints are better, I might be able to start back up again. I started Pilates two months ago and really think that has helped my joints.



I love to run and so far I have been able to keep going. I've never been fast but I enjoy the exercise. About a year ago it became really difficult to keep up. I get winded quickly and have had to slow right down. I used to run long distances but now just try to do a few kilometers every couple of days. It wasn't until May, when I learned about lupus that I figured it is probably why I'm having trouble.
Luckily I don't suffer from the joint pain that so many here do. My knees bug me sometimes, but I always assumed that was from the running. My fingers and wrists bother me. So for now I will keep running and pray I can keep it up.

How do you like the pilates? I have always wanted to try it, but I'm not very flexible.

Well you certainly have a good attitude. Do take care.

lovedbyHim
08-07-2011, 02:15 AM
Hi Irs76, welcome! I know you will find great friends support here. I have a wonderful rheumy and I travel hours to get to her, but she is worth it. I have hoshimotos from the lupus. It can only be diagnosed with blood test for antibodies attacking the thyroid & ultrasound. T3&4 were within normal limits. The symptoms, were, not joint related. Muscle spasms, extreme fatigue, sleeplesness, hair loss, dry skin & eyes, broken nails, etc. Hope this helps.

rob
08-07-2011, 09:08 AM
I am very happy to have discovered this site. After years of wondering what was going on with my health, I finally feel like I have some answers.

Before a month ago, I knew very little about lupus. Two people at work also have it, but I don't have much opportunity to talk to them about it, so I hope to meet some more people who can relate to what I am going through.

...snipped for brevity...
Anyway, sorry to ramble, just wanted to say "hi" and I look forward to meeting some new people :-)

Hi lrs76,

I'm no expert, but I do have some practical experience from living with SLE for 7 years, and from being a moderator here for two. I've been through over a dozen rheumo's since my diagnosis. My opinion is, that you found a gold nugget with the first Rheumatologist. A good rheumo who knows Lupus and will spend time with the patient, is a rare thing indeed. I'd stick with her.

The second one, sounds like your typical, ignorant, "I won't give a diagnosis because I have to cover my incompetent ass all the time" type of person who does not deserve the title Rheumatologist. I have seen them far too many times, and have read about them even more times in the stories of people here over the years. To just flippantly say "if you have it at all", is a big red flag in my book. For her to simply dismiss a fellow rheumo's diagnosis right off the bat without even studying the test results, or listening to you talk about your symptoms in detail, is arrogant, and foolish. Handwaving away a serious diagnosis based on nothing more than personal incredulity, doesn't cut it.

In regards to second opinions, yes, second opinions are important, and it's everyone's right to seek one, or more. I will never discourage anyone here from seeking a second opinion. However, are you getting a second opinion from another rheumo with such outstanding qualifications as your first one? I don't think you are. A second opinion is a good thing if it comes from another similarly qualified individual. However, good, competent rheumatologists are rare, and finding two good ones within a few hundred miles of each other is like finding a needle in a haystack.

You mentioned your "gut instinct". My opinion on gut feelings, or gut instncts is simple. Go with it, and trust it. You know yourself, you know your body. Trust what it's telling you.

As for a second opinion helping family accept a diagnosis of Lupus, it did not work for me with my family. What did work, was telling them yes, I have this thing, I am learning to accept it and deal with it, and you need to do the same. End of conversation thank you very much.

My diagnosis was pretty much a slam dunk and I felt no need to seek a second opinion, however I was required to have the diagnosis verified by another rheumo when I applied for disability, so in a way, I did get a second opinon. The second rheumo verified that I do indeed have SLE.

So, those are my thoughts. I'm glad you found us. Welcome to WHL!

Rob

PS-You need to clone that first rheumo and send a couple of copies to every state in the the union, and ship a few to our friends downunder, in the U.K., and up in Canada too!

lrs76
08-07-2011, 10:39 AM
I love to run and so far I have been able to keep going. I've never been fast but I enjoy the exercise. About a year ago it became really difficult to keep up. I get winded quickly and have had to slow right down. I used to run long distances but now just try to do a few kilometers every couple of days. It wasn't until May, when I learned about lupus that I figured it is probably why I'm having trouble.
Luckily I don't suffer from the joint pain that so many here do. My knees bug me sometimes, but I always assumed that was from the running. My fingers and wrists bother me. So for now I will keep running and pray I can keep it up.

How do you like the pilates? I have always wanted to try it, but I'm not very flexible.

Well you certainly have a good attitude. Do take care.
Hi!
That's great that you are able to keep up with the running - even though you have had to slow down it is still good that you are keeping with it. I too have noticed that with cardio - I used to easily be able to do a couple of hours of high intensity but over the past couple of years, find that sometimes I have chest constriction and get winded. Or, if I am having a good breathing day, my joints might ache. Good days and bad days seem to be the rhythm. However, I love exercise and will keep plugging away at it even if I have to move slower or less. You too have a good attitude and I think that really goes a long way.

I love Pilates and am hooked. I had always wanted to try it but it was pretty pricey at the gym I go too and there weren't studios in my area. My neurologist who saw me prior to the lups diagnosis recommended it because while she ruled out MS, did say I had "neuromuscular skeletal" problems (left leg numbness, arthritis) and that Pilates would be great. I found a studio in town that had been open for about a year and went for a demo and signed up that day for an unlimited monthly membership. Not cheap, but I figure the health benefits will far outweight the cost. It also motivates me to go often so that the price per session is low. The great thing about Pilates is that even if you don't have flexibility to start, it will get there with time. I am not the most coordinated or flexible person but have really noticed a difference. I go after work and find that it is also a great stress relief after a long day at work. Plus, I've met some great new people too (class sizes are four). Now I just need to get back into some more cardio as I kind of let that lapse a little.

Nice to meet you :-)
Leila

lrs76
08-07-2011, 10:48 AM
Hi Irs76, welcome! I know you will find great friends support here. I have a wonderful rheumy and I travel hours to get to her, but she is worth it. I have hoshimotos from the lupus. It can only be diagnosed with blood test for antibodies attacking the thyroid & ultrasound. T3&4 were within normal limits. The symptoms, were, not joint related. Muscle spasms, extreme fatigue, sleeplesness, hair loss, dry skin & eyes, broken nails, etc. Hope this helps.

Hi!
Thank you for the welcome. That's great that you too have a great rheumy. Sorry to hear that you have thyroid problems - thank you for the info on it - I have an appt. with my primary Tuesday and am going to ask him about getting my thyroid checked. I think my T4 was high on one blood test and about 8 years ago, I did have thyroiditis so maybe that is happening again.

Nice to meet you - I have started catching up on posts and you always have great things to say so I appreciate your words.

:-)

Take care,
Leila

lrs76
08-07-2011, 11:09 AM
Hi lrs76,

I'm no expert, but I do have some practical experience from living with SLE for 7 years, and from being a moderator here for two. I've been through over a dozen rheumo's since my diagnosis. My opinion is, that you found a gold nugget with the first Rheumatologist. A good rheumo who knows Lupus and will spend time with the patient, is a rare thing indeed. I'd stick with her.

The second one, sounds like your typical, ignorant, "I won't give a diagnosis because I have to cover my incompetent ass all the time" type of person who does not deserve the title Rheumatologist. I have seen them far too many times, and have read about them even more times in the stories of people here over the years. To just flippantly say "if you have it at all", is a big red flag in my book. For her to simply dismiss a fellow rheumo's diagnosis right off the bat without even studying the test results, or listening to you talk about your symptoms in detail, is arrogant, and foolish. Handwaving away a serious diagnosis based on nothing more than personal incredulity, doesn't cut it.

In regards to second opinions, yes, second opinions are important, and it's everyone's right to seek one, or more. I will never discourage anyone here from seeking a second opinion. However, are you getting a second opinion from another rheumo with such outstanding qualifications as your first one? I don't think you are. A second opinion is a good thing if it comes from another similarly qualified individual. However, good, competent rheumatologists are rare, and finding two good ones within a few hundred miles of each other is like finding a needle in a haystack.

You mentioned your "gut instinct". My opinion on gut feelings, or gut instncts is simple. Go with it, and trust it. You know yourself, you know your body. Trust what it's telling you.

As for a second opinion helping family accept a diagnosis of Lupus, it did not work for me with my family. What did work, was telling them yes, I have this thing, I am learning to accept it and deal with it, and you need to do the same. End of conversation thank you very much.

My diagnosis was pretty much a slam dunk and I felt no need to seek a second opinion, however I was required to have the diagnosis verified by another rheumo when I applied for disability, so in a way, I did get a second opinon. The second rheumo verified that I do indeed have SLE.

So, those are my thoughts. I'm glad you found us. Welcome to WHL!

Rob

PS-You need to clone that first rheumo and send a couple of copies to every state in the the union, and ship a few to our friends downunder, in the U.K., and up in Canada too!

Hi, Rob
Thank you so much for the welcome and for the great words of advice - you are a great writer. I would love to clone my first rheumy - I'll have to tell her that when I see her again in September - I'm sure she'll appreciate it :-)

I'm sorry to hear that you have had to live with SLE for 7 years - and that you too have had your fair share of doctors. I was surprised by the second rheumy as well to brush off all of the work done by the first. I spoke briefly with my co-worker that also has lupus and she told me that this had been her rheumy but that she stopped seeing her because she didn't like her attitude. So, I think that despite the second doctor's long experience and PHD, I will classify her as ignorant and dismiss her completely :-)

It's great to meet you - I am so happy to have found WHL.

:-) Leila

running girl
08-07-2011, 12:23 PM
Hi!
That's great that you are able to keep up with the running - even though you have had to slow down it is still good that you are keeping with it. I too have noticed that with cardio - I used to easily be able to do a couple of hours of high intensity but over the past couple of years, find that sometimes I have chest constriction and get winded. Or, if I am having a good breathing day, my joints might ache. Good days and bad days seem to be the rhythm. However, I love exercise and will keep plugging away at it even if I have to move slower or less. You too have a good attitude and I think that really goes a long way.

I love Pilates and am hooked. I had always wanted to try it but it was pretty pricey at the gym I go too and there weren't studios in my area. My neurologist who saw me prior to the lups diagnosis recommended it because while she ruled out MS, did say I had "neuromuscular skeletal" problems (left leg numbness, arthritis) and that Pilates would be great. I found a studio in town that had been open for about a year and went for a demo and signed up that day for an unlimited monthly membership. Not cheap, but I figure the health benefits will far outweight the cost. It also motivates me to go often so that the price per session is low. The great thing about Pilates is that even if you don't have flexibility to start, it will get there with time. I am not the most coordinated or flexible person but have really noticed a difference. I go after work and find that it is also a great stress relief after a long day at work. Plus, I've met some great new people too (class sizes are four). Now I just need to get back into some more cardio as I kind of let that lapse a little.

Nice to meet you :-)
Leila

Nice to meet you too! You've convinced me to give palates a try. I'm not sure how much longer I will be able to run, as least not in this heat. There is a studio very close to my house. I'll have to check it out.

take care,
Brenda

Elo
08-07-2011, 12:50 PM
PS-You need to clone that first rheumo and send a couple of copies to every state in the the union, and ship a few to our friends down under and up in Canada too!


Oooh! OOoh! I agree! Send one here please! Please please please - I would love one! (;

JuliaL
08-07-2011, 02:18 PM
Welcome, lrs! I'm sorry you were diagnosed with Lupus but glad you're looking for help and support! It's a lot to wrap your mind around and most people just don't understand!

As for your question about a second opinion, my answer is no. Sort of, lol. I don't live in a huge city so there's never been more than one rheumatologist in my area. And you're not always guaranteed that the one rheumatologist will be good! So, no, I haven't really gotten more than one rheumatological opinion but other docs have weighed in.

Frankly, if you've got a fabulous rheumatologist, you're very lucky! They're in high demand and short supply! Sometimes a second opinion is a great idea and other times it's a waste of money and time. Only you can decide what you need and you need to make yourself happy and comfortable. If I might be so bold, don't feel that it's your job to make your family and friends comfortable with your health situation and decisions. It's not. To be honest, you're going to have enough of a challenge weighing your own decisions and you need people around who will be supportive of you, not challenging you or adding stress.

My mother used to call me and cry about me and my health. It upset me greatly. On one occasion, the night before I was scheduled to have surgery (and, no, she wasn't coming to help because traveling "made her nervous"), she called me, started weeping, and started the "what-if litany:" What if they paralyze you? What if you don't wake up after surgery? What if they find something else wrong? I finally had to shriek, "STOP IT!" and then tell her as calmly as I could that I was trying to be strong and brave for myself and my son and I really didn't have the energy to be strong and brave and deal with her hysterics, as well. So if she couldn't call and be even slightly calm and supportive than it's better if she didn't call.

For the most part, it worked. Every now and then I'd have to remind her. But it was important to establish boundaries and let family know what was and wasn't helpful. I think everyone with a serious illness needs to establish those boundaries sooner rather than later. Illness can unintentionally invite drama, lol. I wish you well!