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serand4
11-10-2010, 01:48 PM
Wow, I am so frustrated right now! Two days ago my lung doctor told me that I have shrinking lung disease. This is very dangerous but explains my intense breathing problems that never show up on x-rays. It also means that there is Lupus in my lungs. Okay, on to the rheum. I've been seeing her for four years, 3 1/2 for fibromyalgia. In June I showed up with the malar rash and elevated ANA numbers. She put me on methotrexate but I saw the side effects and asked to be changed to plaquanil. I've been on that since June. My primary care physician is absolutely certain I have Lupus and has seen me in the hospital on numerous occasions and told me I needed to take the Lupus VERY seriously or I'll be dealing with renal failure soon.

Flash forward to today. My lung doctor told me to go see my rheum right away so I did. She sat me down, told me she doubted I had Lupus due to my low ANA numbers. She just thinks it's fibro. She told me the lung doctor told her my tests were fine, which I know isn't true since not only was I was there, my parents heard it too. I mean, this doctor was in a panic to begin treating this.

I want to scream at the top of my lungs but I'm simply too tired. I've left a message for my lung doctor for clarification. As all my fellow sufferers know, this disease is SO confusing and all I need is a doctor sitting me down and telling me essentially the sky is green and the grass is blue!

Has this happened to you guys?

tgal
11-10-2010, 02:10 PM
Oh welcome to the merry-go-round of doctors! This is the same trouble I have been having. I am on 9 (count the) 9 medications and I have yet to have a firm diagnosis. Of course I have the high BP and Fibro but I am also on the plaq and pred. but just like you one doctor says "classic lupus" and another says "the tests don't show active lupus". I can't tell you how to handle this but I will tell you what is working for me. I no longer care about a name. I don't care if they name my autoimmune disease. I only want them to figure out what meds will make me feel better.

When I go to a doctor that isn't listening to me or says things that let me know he/she doesn't "get it" (like your rhuemy) I fire them and find another. This place taught me that. I don't work for the doctors they work for me. I hire them and I can fire them. If it were me I might consider finding a new rhuemy. Maybe get one that is suggested by your Primary Care so you know that they have a good working relationship since he is already convinced of what you have.

Just my 2 cents worth

froggal
11-10-2010, 03:30 PM
I had two doctors arguing right in front of me when I was first diagnosed. One said it was lupus and the other said it wasnt. Of course I went and got another opinion. Its a crazy world!

serand4
11-10-2010, 04:26 PM
I told my parents about today's happenings and I thought my mom was going to go attack the rheum. I had to tell her to settle down. I think something is up with this doc. She prescribes my narcotics and I wonder if she's getting audited or something and trying to punt me as a patient. In the meantime, I'm going to speak with my pcp who I trust so much and ask if he can take over my meds and recommend another rheum. I'll also have new blood tests to help me also on the route of finding out if I have Lupus -- however, of the 11 symtoms, I have 9 so I'm pretty sure. Anyway, thanks guys! This is such a frustrating business and without this forum, I truly don't know what I'd do.

Saysusie
11-10-2010, 04:56 PM
Hi Serand4;
I would say that, with reference to your rheumy; she needs to know that you do not appreciate her dishonesty and that you know full well that you have Lupus and that it is close to being critical. She either has the choice of treating it (and you) as such or you want another rheumy IMMEDIATELY because you are not going to risk you health for the sake of her unwillingness. Stand your ground, do not let her discourage you or try to convince you otherwise.

I wish you the very best :-)

Peace and Blessings
Namaste
Saysusie

serand4
11-10-2010, 06:40 PM
Hi tgal:

My only problem is that the last time I switched doctors more than 3 times, my disability judge accused me of doc shopping. I AM so in your corner on the fact that we hire them and we pay them and they should at least treat us with respect. While I may be more forgetful lately, I sure as hec am not stupid. I may forget what I had for lunch, but I absolutely do not forget what my doctors say. That's why I was so frustrated today. Don't look me in the eye and lie. I have a 16 year old who can do that, thank you very much! I'm slowly pulling my plans together in my head because I want this straightened out. If this is shrinking lung syndrom, I don't have time to horse around. My oxygen is down 30% as is my lung capacity. I already can barely go out to pick up groceries. I don't have time for a doctor to cover her butt for whatever reason.

Take good care and thanks for the support!

teresaa40
11-13-2010, 06:00 AM
Im turning 51 next month, well, Ive decided that Im only going to turn 50 again this year, but, anyway, after all these years of suffering with what I KNOW is Lupus, and still not being diagnosed because of my total frustration with doctors, and going from one diagnosis to another, including a Lupus diagnosis that was never documented, so I have nothing to hand to a doctor that says, X doctor stated this patient is believed to have Lupus. I reallly would like to have a definitive test result, but, I have just decided that treating my symptoms is more important that convincing some guy who wears a lab coat that I have Lupus when there is no definitive way to prove anyone does or does not have it, except in the lucky cases where the tests came out convincingly for them.

tgal
11-13-2010, 07:42 AM
Teresaa,

I have come to the exact same place. As long as they will treat the symptoms I no longer concern myself with a name. Sure, it would be nice but it really changes nothing and I refuse to stress over it any more

magistramarla
11-13-2010, 10:20 PM
I'm at the same place, too. I had a good rheumy in Texas, who listened to me and did give it a name - Mixed Connective Tissue Disease. Since we've moved, my new rheumy doesn't seem to really agree, but she has kept prescribing my meds. I've gotten to the point of feeling glad that the meds are helping a bit, so I guess that it's not getting me anywhere to keep asking for more answers. I seem to be in a holding pattern right now, with a doc who just doesn't want to take up much time with me.
I'll just hold on to the hope that my good rheumy will keep seeking answers for me when we move back to San Antonio.
Hugs,
Marla

teresaa40
11-13-2010, 10:59 PM
Sometimes all we have to cling to is the name, Lupus. We don't want to have it, but, we work so hard to hear the word once and for all. What an odd bunch we are.

serand4
11-14-2010, 12:38 PM
My only concern is I've been taken off the Plaquanil but my Prednisone has been increased. Honestly, the higher level of the Pred has given me more strength than I've had in months but if I do have Lupus (which I'm 99% sure I do), what will happen if I don't medicate it. My pcp once sat me down and gave me a heart to heart talk about taking this seriously because everything can begin to destruct which I believe is happening with my lungs and possibly my kidneys. Thank God I can see my pcp on Thursday and really get his point of view. He treats me like I have a brain and is so kind and involved. I'll just never understand what happened with my rheum doc. I trusted her so much as she really helped me out with my fibro. Suddenly she's treating me like I made everything up with the Lupus. Guys, she called me on my cell phone in a panic back in June to tell me they're treating me for Lupus and put me on Methotrexate. When I went in to get more information, she told me she would never prescribe anything unless the labs and symptoms demanded it. Then...suddenly I don't have Lupus and I'm crazy.

I have to wonder if these docs understand what they do to us when something like this happens. Right now I have such breathing issues and other issues. I know being on 30mg of Prednisone is dangerous but I can breath and my body works so much better. My pcp said to use it if it helps. My rheum told me to use what it takes to cut the pain and stay awake and moving.

Anyway, thanks for all of the support and input. It means the world to me!

tgal
11-14-2010, 04:20 PM
I agree. You need to talk to the PCP about the Plaquanil. It took several months to work on me but it did help quite a bit.

Also, don't think that we doubt your story about the rheumy doc. The day I walked in with the rashes, joint pain and went over my symptoms the doc looked at the positive ANA and said " I don't have to wait for the test results this is classic Lupus". The day the test results came back normal (even the ANA) he said "oh, no lupus". Could be fibro. That was the end. He left after 4 min and we were done. Don't feel alone. Too many doctors out there are like that. The doc I went to is even listed on the Lupus website as a doctor to see LOL

mountaindreamer
11-16-2010, 05:46 PM
hi serand4,

so strange that your dr. started you on mtx without first trying plaquenil. My rheumy did not put me on mtx until the plaquenil did not help me very much.

do not question yourself. you are doing a great job standing up for yourself. it is your health, and your life....you do what is right for you.

i recently fired my nephrologist. He panicked, called my rheumy and told her to decrease my mtx dosage, cause of his concern for my kidneys. She did as he instructed, i went into a horrible flare. when i went to his office, i asked him if the lab work had changed and he said no. i asked him why he had my mtx reduced, and he replied...."everything is fine, just go back to your original dosage." i continued to question him about his actions, and he was not interested in talking about it. Anyway, long story short, when i went back to my original dosage, i bought the wrong syringe needle, and was taking the wrong dosage for a long time. I spiraled into a horrible flare, and am still struggling with it. My rheumy referred me to another nephrologist, and she is wonderful and is very familiar with lupus....and she is a good team player.

I have found that lupus/fibromyalgia/rheumatoid arthritis, etc....requires a team - it is not the call of just one dr.

since you have had so much confidence in this dr. previously, it might be worth trying to speak with her about what you are feeling. If she turns out not to be right for you, don't hesitate to ask your pcp for another referral, and let him deal with the disability police.

Angel Oliver
11-17-2010, 08:00 AM
As you can see yes many of are or have gone through the same. Ive changed doctors a few times and rheumi's.I was told i had lupus.More recently been told my bloods are fine.I then said so does that mean im a fake.The doctor said no,you are very sick but between the rheumi and myself are both trying to find out our next move,what to do with you as we know you are very sick.....but honestly do not know why.He went onto say the fibromyalgia and the M.E is very hard and the M.E is a difficult illness on its own.He agrees i have allot of lupus symptoms....but until the bloods say different they dont know what to do with me.Its an awful time.No energy fatigue city,body hurts,hairloss and insomnia sending me insane.I am at my wits end.Been passed from pillar to post and been a hard fight.I am on plaquenil.
So hang in there.We all undertsand how frustrating and how angry it makes you.....we just want a name for this.My doctor said at least its not cancer.I told him i dont care what name you give it but i know its not M.E/chronic fatigue syndrome alone.So yet again i wait to see what they will do with me.I get the impression they want me just to go away.I want to live again and go to work.Instead i daily have to prove i am actually sick.Let me win that lotto lol....then id find out for sure!!
love
Amanda.xxxx