Author Topic: Seronegative Discriminating Rheumatologist  (Read 5526 times)

CathyO

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Seronegative Discriminating Rheumatologist
« on: June 07, 2012, 02:41:06 PM »
I am just shocked and mad and depressed. My husband went with me to doc. 2nd visit seeing this new Rheumatologist. She replaced the retired one. Male doc still there. She is about 30 and from India. A bit condescending. She said that because my blood tests are negative I do not have full Sj?gren's. I said um- well 30% of Sj?gren's patients are Seronegative actually. She didn't believe me. She said that her info is correct and that it's more like 90% are positive  ecause of a registry at UCSF of 2000 patients that she was involved in. She said if you are Seronegative you would just have a lighter form of the disease or really not even the disease. That I couldnt really have Sj?gren's  probably because I didn't have positive blood tests or lip biopsy. I told her that was not what I've read about Sj?gren's. And that's even not the info I'm reading now on the Sj?gren's foundation website.  My husband thought we were going to come to blows. She just was not open to any other opinion.

I even told her that I do have positive antibodies for Graves Disease.  I had setup the appointment to ask about getting a short round of prednisone for inflammation. I have a flare now with increased pain selling bursitis and tendinitis in shoulders wrists hips sacroiliac and Achilles that came on suddenly. Plus pain and selling in finger joints and neck and under jaw. Also I asked about plaquenil. I've had very watery diarrhea. She said to just stop taking it. What? I asked about taking the name brand instead of the generic. She said that wouldn't make a difference? That's not what I've read and heard. I've read I should wait it out and wait for my body to get used to Plaquenil.

Am I being too sensitive here? Should I question my judgement or hers? I did not think UVSF was so stringent. I've heard John Hopkins was so but not UCSF.

She wrote out a lab slip to check for inflammation. If that's negative, am I not in a flare?

I went earlier today to my opthamologist and asked him for a referral to the new rheumatologist in our town. This other doc is in another county. I've been going there for three years as the old rheumatologist in our town didn't treat Sj?gren's.

I mean this flare is bad I went from walking two days ago to slowly stepping with a cane.  Thank you all in my help for my health and sanity.

Daisy1234

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Re: Seronegative Discriminating Rheumatologist
« Reply #1 on: June 07, 2012, 02:54:36 PM »
Hi Cathy,

if you are able to move on to another rheumatologist if it were me, I would do so as soon as possible.  This person sounds very inflexible in their thinking and personally, I like to work cooperatively with all of my doctors in taking care of my health.  I expect them to listen to me and work with me to address my health issues.  You may wish to do the lab blood work that was ordered by her anyway, but if so, make sure that your family doctor (PCP) gets a copy of all of your bloodwork/lab results so that you can talk it over with your PCP and also have something to take to your new rheumy should it come to that.

You clearly have health issues and need medical intervention and attention.  Rheumatologists and other specialists are just people like anyone else.  Some are fantastic, some are average and some shouldn't be in the business.  Your symptoms are real and you need treatment.  If it were me, I would move on and see what another rheumatologist will bring to the table for you. 

Wishing you luck,
Daisy

matildamillicent

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Re: Seronegative Discriminating Rheumatologist
« Reply #2 on: June 07, 2012, 03:37:34 PM »
Your experience sounds just like me, except I was a bit more gutless than you.

(some) Rheumatologists don't seem to like being told that they're wrong, that you've done any research on the conditions or that you have any knowledge at all. My appointments have been just like yours, no blood work/biopsy you definitely don't have Sjogren's and there's no possible way that you do or ever will. My last rheumatology appointment they even told me I was wasting their time.

In your case it sounds like you argued back and she didn't like it so she shut down even more (it's happened to me to). It's your right to disagree with her, but I'm really not surprised by her reaction.

Have you got other specialists that are helping? I've got a great GP, ophthalmologist and a oral diagnostic surgeon. They all agree something autoimmune is going on and that even if rheumatology won't help, they will. So although I feel like it would be better to have rheumatology onside, it doesn't really matter.

If you can, without causing any damage to your medical records or future appointments, I would find another rheumatologist.

Are you finding Plaquenil helpful aside from the side effects?

ohiolady

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Re: Seronegative Discriminating Rheumatologist
« Reply #3 on: June 07, 2012, 03:54:06 PM »
I echo the advice Daisy gave you.  I am seronegative as well but have Hashimoto's Thyroiditis.  I gained a new level of concern from my rheumatologist due to my gastroparesis and swollen parotid glands.  My glands were quite swollen on one particular visit and she seemed to forget about my negative blood work.  She was truly concerned. 

Hopefully, you can find a doctor who will treat you and give you the respect you deserve.

Good luck.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

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Female   Age: 62

Scottietottie

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Re: Seronegative Discriminating Rheumatologist
« Reply #4 on: June 07, 2012, 05:28:37 PM »
Hi CathyO  :)

I empathise with you. I had one rheumy give me a dx of SjS in 2004 and another take it away in 2011 as a result of a negative lip biopsy. He has been kinder than your rheumy though in as much as I am still on Plaquenil and he hasn't discharged me or anything. He acknowledges that the symptoms are real. It made me feel somewhat 'cast adrift' though.

Take care - Scottie  :)
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eye2dry

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Re: Seronegative Discriminating Rheumatologist
« Reply #5 on: June 07, 2012, 05:43:21 PM »
WOW! what a terrible visit.

I belive I would seek out another rheumatologist.

I am afraid if I sat and had to listen to this kind of talk I may be tempted to stand up and shout,

"you stupid idiot! I am a lay-person and apparently know more than you on the subject of sjogreens. I demand to see your diplomas and medical license. your not fit to have access to patients"


eye2dry

DragonflyC

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Re: Seronegative Discriminating Rheumatologist
« Reply #6 on: June 07, 2012, 06:05:17 PM »
I completely agree with what everyone else has said.

Also, having a normal ESR does not necessarily mean you aren't in a flare. My ESR has never been elevated, even when I've been a total mess and in tremendous pain.

Sleepy In Seattle

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Re: Seronegative Discriminating Rheumatologist
« Reply #7 on: June 07, 2012, 06:57:01 PM »
My blood work is all in the normal range (except the Sjs's-specific one and APS, which are always positive) and I lost my hearing in one ear due to autoimmune disease, so the blood work doesn't mean the disease is not very, very active. All my inflammation markers were normal, sed rate, blah blah blah - $1,800 of blood work 98% normal. Yet one ear is shot. Blood work is a clue, but only ONE clue as to what is going on.

Seriously - personalities who only work well in a word of black-and-white, yes-or-no certainties just SHOULD...NOT...GO...INTO...RHEUMATOLOGY....  >:( ::)
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

eyeamdry

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Re: Seronegative Discriminating Rheumatologist
« Reply #8 on: June 07, 2012, 10:38:03 PM »
Unfortunately, I think most of our doctors work on a high percentage of black or white.  I once listened to a well known ophthalmologist who spoke at a conference.  We all complained of eye problems and that our eye drs didn't seem to understand, or be concerned about our pain.  This happened to be about dry eye but not necessarily from SJS.  Included were dry eye caused by poisons, Lasik eye surgery and other things.

She explained they do NOT understand our explanations.  Also said they were number oriented.  As if we could establish a number on the pain scale that day (which wouldn't tell them a darn thing.)  She gave us some ideas of how to talk to the drs and how they may better understand.  Write down your symptoms and be specific...perhaps one year ago, you could read a pocket book in 3 days and now it took you two weeks. This isn't very helpful, but I'm trying to get her information to you and all that solid answers worked more than just how bad you feel.

One other thing she told us that it was frustrating to drs when we come in with our own diagnosis!  We are seeking their expertise and if we come in with a bad attitude and already "know what's wrong" the dr is not going to give us his best treatment.  I guess if I put myself in a drs place, I wouldn't especially look forward to seeing a patient who I knew already was hostile.  I am not pointing at any of us on here, just hoping some will read this and it will make sense to them.  Lucy

Tuurre

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Re: Seronegative Discriminating Rheumatologist
« Reply #9 on: June 08, 2012, 04:49:22 AM »
Hi

I know exactly what you mean, i'm going thru the same as we speaking.
So frustrating not being believed living with all symptoms and the just dont listen.

Keep on fighting, go see a new rheumy and maybe an immunologist aswell.

Good luck

/ Tony

mshistory

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Re: Seronegative Discriminating Rheumatologist
« Reply #10 on: June 08, 2012, 05:53:40 AM »
Oh gosh, the condescending know-it-all doctors... I think we've all met one. Definitely find a new doctor! Blood work is NOT the end all and be all of autoimmune disease. When are these doctors going to figure that one out!? Even the incredibly strict ACR criteria for SjS lists a positive lip biopsy and Schirmer's test for a diagnosis if the blood work is negative. And the ACR criteria is intended for research purposes... not diagnostic purposes!

I agree about finding a good immunologist if you can't find a good rheumatologist... I think there are a couple of members here who have given up on rheumies... perhaps they can give you more information if you can't find a good rheumatologist?
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SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

JustKat

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Re: Seronegative Discriminating Rheumatologist
« Reply #11 on: June 08, 2012, 06:56:03 AM »
I can't help but wonder if there are some doctors who just take one look at a patient and decide that they don't want to work with them?

I had a friend who went to the emergency room with pains in her side. The ER doc decided she was a drug addict because of her appearance, ordered some x-rays and tests but basically blew her off. Turns out she had small cell carcinoma.

From what I've read here, and just around on the internet there are lots of people suffering with this whose bloodwork looks good. If that information is so prevalent how could she not know?

I think everyone else is right in that you should find another doctor.


AAACGRL

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Re: Seronegative Discriminating Rheumatologist
« Reply #12 on: June 08, 2012, 10:29:41 AM »
I went through three Rheumy dr's to find the fourth one that worked.  The first one acted like something was wrong but when all that came back off was a high SED rate he said "That's non specific.  You don't have anything wrong.  Maybe you need some counseling." And said no need to follow up with him.  This was at the start of everything (Before my salivary glands acted up, dry mouth started in and dry eyes) The second one said I was the poster child for RA but when the blood test came back negative he said maybe it's all in my head. The third suggested fibromyalgia and then hubby was laid off and we lost insurance. So.. by the time I found Rheumy #4-my symptoms were far more pronounced and I had a ENT and Eye dr to suggesting Sjogrens. I dread the day when my Rheumy says he's retiring. I hope his replacement will know not to blow me off.  It's rare to find a doctor that thinks like mine does. But they are out there!! Good luck!

CathyO

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Re: Seronegative Discriminating Rheumatologist
« Reply #13 on: June 12, 2012, 07:31:22 PM »
Thanks all for your help and understanding. I'm grateful that my husband has been here. I've been home sick in bed for 5 days, just left the house today to go and blood work at the hospital. Apparently I showed up at 5 minutes to 6 PM and they weren't taking any more patients for blood work. Bummer.  Went to the bookstore and got some books, my husband was driving. I just feel very depressed. I have an appointment with this rheumatologist in 2 weeks. I called the other one in town, and can't get in until August/September. SO made an appointment there. Of course gee, it's June, so when I go to the rheumatologist in August/Sept., I will probably be not in a flare by then. Just dperessed I assume the bloood work will be a waste of time, it if's all negative she will assume I'm fine. I dont feel fine. I feel very cloudy mentally, lethargic, very sore. My fingers are sore and welling and my toes are also sore, but dont' appear to be swollen. So I dont know what the heck, is going on. I'll just show up and say I feel like shoot I don't know what's wrong with me you're the doctor you figure it out!  If you're having a flare in RA or lupus or Sjogren's it would make sense to give medicine. She gave me tramadol for the pain and swelling? OK.. well that's not going to fix it. ((Sigh)). I'll look around for more rheumatologists.

Ark mom

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Re: Seronegative Discriminating Rheumatologist
« Reply #14 on: June 12, 2012, 09:12:17 PM »
Cathy, I'm sorry you are having a tough time.  You poor thing!  Hugs!  I have been having a bad flare since February myself.  One day I went bone dry and started having horrible neurological symptoms.  I was so sick on a Friday night.  I marched myself to the ER.  The doctor asked what I wanted him to do, and I said, "I think I am having an undiagnosed autoimmune flare, maybe sjogrens.  Please prescribe me prednisone so that I can manage until I see my primary care doctor on Monday."  And he did!  I was a little surprised but relieved.  I started to feel better the next day.  I'm not saying that this is what you should do, but I just wanted to let you know what I did.   I hope things get better for you soon. 

P.S.  I'm a sero-negative, too, with Graves.
« Last Edit: June 12, 2012, 09:14:09 PM by Ark mom »
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine