Author Topic: New rheumy, would just love some clarity!!!  (Read 2697 times)

Deb 27

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New rheumy, would just love some clarity!!!
« on: June 05, 2015, 08:15:54 AM »
Has anyone else just been through the ringer with rheumatologists and sick to death of the ambiguity????? I went to a new reumy at Mayo yesterday, a fairly young fella. He didn't examine me much at all except my hands. He looked at my x ray report, said he disagreed with it, that I do not have RA. So now, who do I believe? Him or the other two rheumies who said they think I have seronegative RA?? One is retired and practiced for over 50 years!!!!

He also didn't examine my eyes, nose or mouth. He did read the report that said I had SJS and said while the report was positive, he'd seen worse results. It seems that some of us fall more into the grey zones of a disease and some are black and white. While I am grateful I am not in worse shape, I do want to feel better. This Dr. said that 3 months is when the plaquenil really starts doing it's job. I've been told that before. I am still dry in my nose and mouth.

At first yesterday, I was relieved b/c I don't have RA, but now, I am wondering who do I believe?  I just want to feel better. Today, my hands are swollen and achy, same with my feet. Sigh..................... I am sick of Drs. and not feeling well and no definite answers!!!!
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Tharrell

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Re: New rheumy, would just love some clarity!!!
« Reply #1 on: June 05, 2015, 11:23:07 AM »
Oh Deb, I feel ya! My old rheumy as well had me as sero negative ra despite negative xray. That was because I had severe joint pain that was not relieved by methotrexate or sulfazalasine. Only prednisone helped and she didn't like the side effects of steroids. She prescribed Humira and lo and behold the joint pain went away. Well, unfortunately so went rheumy. The next rheumy did the same as yours. Negative xray no ra. Didn't care about prior diagnosis so no Humira. Labeled me fibromyalgia and told me to see pain doctor. I could have cried! Three month misery. Had to wait for my old clinic to hire new rheumy. Unfortunately she won't give me back my Humira either, but she has much better excuse, my cancer antigen level is going up and my oncologist said no. However she has me on low dose prednisone so at least it's something. But my point was, every visit she looks at my hands and she says no swelling, no inflammation! I just sigh and say yeah, but it hurts anyway!
Hang in there!
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,omeprazole, mexiletin

eija

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Re: New rheumy, would just love some clarity!!!
« Reply #2 on: June 05, 2015, 06:00:57 PM »
Debster darling... if it's any consolation to you, I'm just about ready to punch any smarta** doctor noses with my very frustrated fist. It's really sad to say so, because in reality I'm such a coward I can hardly even tell them about my symptoms because I fear being labelled attention seeker and hypochondriac :(

I so wish there was a Star Treck doctor thingie like a bar code reader that would scan you and then show the dx on the screen without any hesitation or unclarity.

Beam me up, Scotty!

Female, 52, in Finland
Sjögren's, fibromyalgia, Hashimoto, depression, migraines, pressure urticaria, mild Raynaud's, MCS...
Cymbalta, Tyroxin, Oftagel drops

Deb 27

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Re: New rheumy, would just love some clarity!!!
« Reply #3 on: June 06, 2015, 05:05:51 AM »
Thanks for the replies. Yea, I am beginning to find out this is very frustrating. Rheumatologists are like meteorologists, it's a field where you don't have to be right even half the time!!!!

Yea, some Drs. do make you feel like a hypochondriac. That's what I thought I was until my lip biopsy came back positive. The older rheumy I saw didn't make me feel that way at all.

I am going to keep searching for a good rheumy. It's a shame the one I saw here who ordered the lip biopsy isn't accessible and has an inexperienced ARNP. There is one other ARNP I know that works in alternative medicine that I trust here and she worked in rheumatology for a long time. I think I can always get good advice from her. She's the one who gave me a script for 400 mg of plaquenil when the other ARNP kept me on 200.

Have a good saturday everyone!
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

quietdynamics

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Re: New rheumy, would just love some clarity!!!
« Reply #4 on: June 06, 2015, 06:54:29 AM »
I have symptoms of pain in hip joints, as well as hands ( which swell.. take rings off) and ankles. I have a combo Dx of SJS/Fibro 

Here is an article by Alan Baer
Associate Professor of Medicine
Division of Rheumatology
Johns Hopkins University School of Medicine
Director, Jerome Greene Sjogren's Syndrome Clinic

Joint Pain and Sjogren's Syndrome
"The joint manifestations of Sjögren’s syndrome are listed in the Table.  An inflammatory arthritis, defined by the presence of joint tenderness and swelling, usually affects many joints, particularly those of the fingers,
the wrists and the ankles. The shoulders, hips and knees may also be painful. The arthritis usually “comes and goes” and affects the same joints in the right and left limbs in a “symmetric” fashion.
Joint x-rays are usually normal."
http://www.hopkinssjogrens.org/wp-content/uploads/2009/11/Joint-pain-in-SS.pdf

Rheumatoid Arthritis Treatment
Hydroxychloroquine
Because these drugs have limited ability to prevent joint damage on their own, their use should probably be limited to patients with very mild, seronegative, and nonerosive disease.
http://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/ra-treatment/

Change .. going to a new Dr. can be a very stressful event.
Autoimmune runs along a spectrum. And I am sure Drs. the extremes in patient labs.
However, at an appt we are there about our situation. I think sometimes a mention of " seeing worse labs" is perhaps an attempt to alleviate our fears, and not meant to diminish our symptoms.
I have had Drs. say "Well at least it is not XYZ, or look at my lab and say.. Great no Leukemia", while I had to rest two days prior just to get to appt. And in my mind I would think to myself.. "what f%*%** planet are you from?".. refocus, redirect to the cut to the bones outline I handed Dr and "That is Great news.. and what about the fact that ... "  Keep them focused.

 eija:I so wish there was a Star Treck doctor thingie like a bar code reader
LOL.. I have said to Drs.. don't you wish you had one of those Star Trek scanners Dr. Bones had?

Deb 27, I hope the articles may help you. They are from the Sjogren's Center @ Hopkins.
If Dr. did not Rx pilocarpine I would inquire about that.
Sometimes it takes more than a first appt to get to know them (and them .. you)
In the meantime you probably have a standing appt and can search out another opinion.

Wishing you the best.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Deb 27

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Re: New rheumy, would just love some clarity!!!
« Reply #5 on: June 07, 2015, 05:49:07 AM »
Thanks quiet, for those articles. Yes, Drs. do have their different bedside manner. I work in health care too and I am sure I say stuff that makes people want to strangle me sometimes!!! LOL....

 I miss my old rheumy that retired.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

quietdynamics

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Re: New rheumy, would just love some clarity!!!
« Reply #6 on: June 07, 2015, 06:08:41 AM »
I am sure I say stuff that makes people want to strangle me sometimes!!! LOL....

I know sometimes you just have to 'verbally make a stand".. but the "eyes have IT"
My user name is quietdynamics for a reason.. say something in a low tone and the other person has to focus to hear you.. BUT .. I usually say first. "Look at me"or they ask a question and I do not answer until they look at me (to see why I am not answering..LOL).. and my eyes are literally blazing.

Dr, nurse, whoever walks in I stand and shake their hand and hold their eyes in greeting.. physical contact. I am human and so are they.  Theses Drs. are really overwhelmed with their caseloads and all the paperwork, etc. they have to do. And I know they have really long hours, not just what we see in an office.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Annticki

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Re: New rheumy, would just love some clarity!!!
« Reply #7 on: June 07, 2015, 02:59:36 PM »
i was at Mayo 30 years ago and they were who said I "probably" had Sjogrens but my blood tests were normal so not to dwell on it as it was also possible I didn't. They determined that my eyes produced half the tears but the only option then was artificial tears anyway. Told me to treat the symptoms with OTC NSAIDs (joint pain). Then sent a report to my doctor here calling it a "functional disorder" which my doctor said meant it was psychological. Said I was making myself sick.
I lived with that for over 15 years till my ophthalmologist mentioned Sjogrens again and asked about other symptoms. Asked to refer me yo a rheumatologist then and I refused because of my experience at Mayo. Then about 6 years ago my primary doctor (different one) sent me to a neurologist for sharp pin like shooting pains in my feet. He decided I was an alcoholic and lying about only drinking once or twice a month. Never went back to him.
Eventually got restasis from the eye doctor and the past 2 years begged my primary for Tramadol as the NSAIDs were no longer helping at all (again a new primary). She kept asking me to see a rheumatologist. My thyroid was out of control and my hands kept swelling and she was sure it was all autoimmune issues. I kept refusing till she held my Tramadol hostage till I agreed to go.
That decision to go has changed my life. I've been on plaquenil for 2 months and my fatigue is much better already and my pain level much lower. I didn't realize how crappy I really felt till I started feeling better. It's like waking up in a new world full of possibilities again. Can't wait to see how far plaquenil will take me back to feeling "normal" again.
Last time I saw my rheumatologist she asked me if I ever felt depressed because of the years I went without medical help for my complaints. I told never depressed. All I felt was anger over and over again till she gave me new life.
« Last Edit: June 07, 2015, 03:09:12 PM by Annticki »

Annticki

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Re: New rheumy, would just love some clarity!!!
« Reply #8 on: June 07, 2015, 03:03:32 PM »
I should add that my blood tests are no longer normal. I have positive SsA and SSB but still negative ANA. I'm sure That's all Mayo saw and probably all they did to test 30 years ago