2 doctors 2 different opinions!

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sleighp
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 7/18/2008 6:11 PM (GMT -7)   
i go to my local community health center, better known as the clinic! it's the closest to me since i live in a rural area. i usually see the same doctor but occasionally see another. here's my situation: Dr H. says that you have to have a positive lupus panel for diagnosis. upon seeing him again for the sun illness, he prescribed prednisone and told me it wasn't necessary to be tested again since i had tested last year! that made no sense to me at all. a week after i was off the meds i got sick again, went back to the clinic, seen another doctor. Dr. D says, you got lupus. she tells me that she thinks i was misdiagnosed with lyme disease three years ago, she links lupus to an EBV outbreak i had prior. she put me back on prednisone and asked that i come back in 4 weeks for blood work. well...i had to come back in 4 days because the prednisone was giving me insomnia and this time i saw DR H. [i know this can be confusing!] Dr. H says, NO WAY NO HOW do you have lupus. i feel like he doesn't pay much attention to my medical records, as i have been ill for over four years. he is always saying, it's your anxiety! does anxiety give you blisters and malar rashes when exposed to the sun?? i never heard of such a thing--but maybe i'm living in a cave.

maybe someone here can help me figure out what my next step should be. i know that i should seek a 3rd doctor, even if that means a long drive and costly gas prices! but is there a lupus doctor? it's not that i want lupus but i do want to know what's going on with my body. i'm really fed up with Dr H and how he seems to overlook serious health issues i'm having and brush it off by telling me it's my anxiety! i told him i have anxiety because i don't know what the hecks wrong with my well being!

i don't know much about lupus. do you need a positive blood panel? have any of you heard of this 11 criteria for diagnosis? is Dr D pointing me in the wrong direction as well? i'm so frustrated and confused at this point!

i go for blood work this coming monday and i'm supposed to get a referral to see a rheumatologist.

i know someone here would know most likely more than my doctors. any advice you might offer will be greatly appreciated.

leigh~

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/18/2008 6:31 PM (GMT -7)   
Yes the 11 criteria are well known and you can find them on the lupus board here. I would go get the blood work take the referral to the rhuemy and most importantly (In my opinion) I would never see Dr. H for anything more serious then a sinus infection again (in fact I would probably trust the LPN at the CVS minute clinic before trusting Dr. H-but then I like the minute clinics for sinus infections and such).
Look up the 11 criteria (on one of the sticky threads at the top of the forum and see for yourself what you think then make sure you see a rhuemy-even if your labs are negative-a rhuemy should be diagnosing you.
Sj

sleighp
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 7/18/2008 7:05 PM (GMT -7)   
thank you sj~* very much. i couldn't find the 11 criteria on the board but did find it listed at the mayo clinic site.
http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=tests-and-diagnosis
from that list i'd say i have 6. i didn't realize that the malar rash is separate from the sun related rashes. so much to learn! i also have an uncomfortable occurrence when exposed to the sun and i wonder if anyone else experiences this...i feel like i'm being stabbed! usually in my chest area. i mentioned this to my doctor and he looked at me like i was from another planet and said he never heard of such a thing. it doesn't happen always, usually with the onset of the season, mid spring to summer when i feel this way.

since symptoms mimic a thousand illnesses i am SO confused and really don't know what the heck i have. are there any other illnesses that cause photo sensitivity? along with chronic fatigue, headaches, chest pain, lung pain, arthritis type pain in fingers and feet? i also get this strange blotchy thing going with my skin, it turns white with red outlines, almost looks like a honeycomb. i haven't come across that in my lupus reading...yet anyway.

and you're right sj, the minute clinics are good for sinus infections and that's about it! i'm fed up and almost wishing i lived in the city!! it's funny because the LPN told me she thought i had lupus three years ago!

i suppose i have to start at square one again with the understanding that this isn't any easy diagnosis if it is lupus. from reading the forum, i began to realize that many of you have gone on for years trying to get a diagnosis.

one more thing. has anyone been diagnosed without a positive lupus panel? that was the one thing i wasn't sure about with the second doc i saw, diagnosing me without a positive. she said a lupus patient could go years before testing positive.

now i'm rambling and i'll end it now so that someone else may come along and post!

thank you again sj for responding.

leigh

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/18/2008 7:13 PM (GMT -7)   
You will get more replies in the coming days but I am lurking here tonight so I will answer for some of the other members.
Yes, there are people here who have been diagnosed without ever having positive blood tests. That being said from your post it seems you haven't been tested in a year-get the tests done and see a rhuemy-that is the best advice I can give you.
The other thing is (and I know its hard) don't be too caught up in the diagnosis that may take time. If your rhuemy wants to start you on medication while still running tests and unsure of the diagnosis-take the meds-get treatment for the symptoms. Let the diagnosis come in time.
Good luck, and take care of yourself.
Sj

Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 7/18/2008 7:19 PM (GMT -7)   
Greetings Leigh!

I have a diagnosis without the positive ANA. The ANA can go positive and change to negative at any time. Some of us stay negative after beginning treatment because the meds help us. It is very different for everyone. I was sero-negative for ANA but I met eight of the eleven criteria. That was enough for my rhuemy. I had been seeing her for three years before I had a diagnosis and any type of treatment.

A rhuemetologist is the type of doctor you need to see. Many rhuemies do well with diagnosing lupus (also known as SLE - systemic lupus erythmo.... - something I cannot spell tonight) or UCTD (undifferentiated connective tissue disease) or MCTD (mixed connective tissue disease). Even rhuemies can disagree, however, so be sure you are comfortable with your rhuemy. Unfortunately there is a shortage of good thuemies and it is sometimes hard to be picky.

Good luck!
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/18/2008 9:14 PM (GMT -7)   
Many people with lupus are also sun-sensitive, it is a well-known part of the disease. But there are many other conditions which include sum sensitivity, so that isn't a defining condition.

You will want to see a rhuemy that is used to handling lupus cases...the usual way of verifying that about a doctor is to locate the local chapter of lupus.org and call and ask them which drs are involved in your area.

I hope you are able to find consistent care soon -- I'd pick one dr at the clinic and make sure you only see that dr, rather than dealing with them arguing back and forth about your dx. Drastic switches in treatments between drs is not good for you.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/19/2008 7:55 AM (GMT -7)   
Hi Leigh and welcome. I don't have a lot to add to the great information you have already been given. Hopefully you will get a referral to a great rheumatologist who will help to sort through your symptoms and give you and accurate diagnosis. I agree that it won't do you much good to see Dr. H anymore since he doesn't seem too knowledgeable about lupus and especially about the bloodwork. Most of us have labs done regularly and way more than once a year.

I know that being in diagnosis limbo can be really frustrating. Please ask any questions you have - we are here for you. Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 7/19/2008 9:24 AM (GMT -7)   
Leigh, welcome. I have tested negative on all but anti-cardiolipid/phospholipid antibodies and lupus anti-coglutent but if you look at my signature you will see what happens when a rheumy ignores blood work and bases things on documented symptoms. I have had 6 or 7 of the 11 criteria documented over the years. For more than a decade I was told it was all in my head. My current rheumy took one look at me, my medical (family history as well) history and the pictures I had of the rashes and I left her office with a dx of SLE and prescriptions used to treat lupus. Over the last 3 years she has slowly refined my treatment and other dxes have been added to the SLE. My blood work remains negative to this day. Because the tests available can vary from day to day she does not rely on them. Instead she looks at the visable cues and how I am feeling to decide if I need a medication adjustment or if things are quiet.

Now, instead of putting up with doctors who try and blow my physical issues off as mental I "fire" them and find a better doctor who actually listens to what I have to say and cares enough to actually look into symptoms. I would never see the male doctor again unless it is for a minor illness. You need to do the blood work but before you get the referal check into what rheumy's are lupus experts- treating a handful of cases does not an expert make nor does a rheumetology specialty. Find out what percentage of patients are lupus patients, see if there is a local support group and see who they recommend.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Procardia, Prilosec, Evoxac, Celebrex, Darvocet when things get too bad


pinksage
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 7/20/2008 2:16 PM (GMT -7)   

Hi Leigh,

I am new to this forum, but certainly not new to Lupus (SLE).  If I were you I would definitely find a different doctor and fast.  I have had 9 of the symptoms listed in the criteria for Lupus and several of the blood tests indicating Lupus and Sjogrens.  I have been on medications for Lupus now for 14 years.  I literally went for 35 years with Lupus symptoms before it got totally out of hand and nearly killed me before I finally got diagnosed.  Lupus is a serious illness and it is very hard to diagnose.  It can develope insiduously as was the case with me and then boom you get a virus and it can go full blown.  That is what happened to me. I did not have a positive ANA or anything until I got a case of the Chickenpox at the age of 35.  That is when my health went right down hill big time.  I am very lucky to have gotten diagnosed when I did or I most likely would not be here today.  I will be 50 in December.  Good luck and I hope that you find a good Rheumatologist that will listen to you and help you figure out what is happening with you.

 

Kathy


Live each and everyday as though it were your last and do the best you can to help yourself and others.


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 7/20/2008 3:24 PM (GMT -7)   
You wrote
"i also get this strange blotchy thing going with my skin, it turns white with red outlines, almost looks like a honeycomb"

This sounds like " livedo reticularis" a vascular condition. Although it can occur in well people especially when the weather is cold, it is often associated with lupus and also with a blood clotting condition called antiphospholipid syndrome. It isn't diagnostic of anything but is one of the many additional signs that could contribute to getting a connective tissue disease diagnosis. Google (Livedo reticularis), Images to see pictures you can compare yours with.

Good Luck!

BB

sleighp
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 9/23/2008 11:00 AM (GMT -7)   
i want to thank everyone for their responses! i had been offline for a good while taking care of my brother's children. [family emergency] and when i got back on, i tried and tried to respond but the submit button was missing!! i am still battling my way to a proper diagnoses and might have a new doctor soon. new blood work came back normal with an exceptionally high C4a count & normal C3a. now i'm being told that that indicates post lyme disease so i'm more confused than ever. but i did take matters into my own hands and called UMMC here in Maryland and made an appt. to see a rheumatologist, they're supposed to be calling me back with an appt.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 9/23/2008 12:53 PM (GMT -7)   
That sounds like good news -- I found that an actual rheumy is really a necessity with this stuff!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/23/2008 8:15 PM (GMT -7)   
Hi Leigh . . . I didn't have anything to add . . . but wanted to welcome you to the forum!!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/24/2008 7:38 AM (GMT -7)   

Hey Leigh,

I wanted to welcome you to the forum too, and to tell you that I  have those blotchy areas on my upper arms, but it seemed related to the sun to me. 

And I have the sun sensitivity that you talk about and it does seem to be worse in early spring through late summer.  And after a day of being exposed to the sun, I get sick like I have the flu, every time. 

Now it seems to be getting worse.  Less exposure to the sun is required to  make me sick, and sometimes the flu symptoms arrive the same day I am in the sun. And sometimes it is like the sun is just draining all my energy from me.  Told my kids I must be part vampire yeah

Hopefully you will get some answers when you have your blood tests done

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
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