Confused and not diagnosed yet

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Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 5/24/2017 8:56 AM (GMT -6)   
Hello all. I have been on these boards for a while. Mostly on the lupus forum since my primary believed I had lupus. My rheumotologist keeps say I have an ai but has not diagnosed me with anything. I do have ulcerative colitis which is thankfully in remission. He has treated me with planquanel, sulfasalazine (which got me very sick and attacked my liver), then mtx. All did not give me much relief. I have joint and muscle pain all over, exhaustion, hair loss. I told my rhemy that I have dry eye as well. He put my on ariva which works better than anything else. But now he checked off Seropositive RA on my sheet. Anyone have ra without positive blood work? I am so confused and have been undiagnosed for over 2 years. Any input would be greatly appreciated. Thanks in advance.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Katrina77
New Member


Date Joined May 2017
Total Posts : 2
   Posted 5/24/2017 6:36 PM (GMT -6)   
Hi Lisa,

I'm sorry you're going through all of this. I was just recently diagnosed with seronegative RA as it didn't show in my blood work, but I have inflammation in my knees, elbows, wrists and fingers. But when it all started I went to see two rheumatologists, and both of them said there's no way it's RA. Then I went to Mayo Clinic and there I've done ultrasounds and scans of my joints, and that's how I was diagnosed. Maybe you should ask the doctor to do a full joint scan, it was very helpful for me. Good luck with everything!

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 5/24/2017 9:11 PM (GMT -6)   
Thanks. My rheumy is very conservative and slow to diagnose. He is too afraid of upsetting my ulcerative colitis. I am seeing a rheumy with Penn Medicine in July. I hope to get a full work up and see what is going on. I am glad you got some answers. Hope your treatments have worked for you.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1877
   Posted 6/4/2017 7:11 AM (GMT -6)   
Lisa, I have seronegative RA. I would say that my RA is mild. I have some erosions in my hand/fingers on x rays. So far, plaquenil has helped me.

Sorry this is hitting you. I had a rare form of colitis called diverticular colitis that would not respond to meds, so I had surgery which seems to have cured me. It was when I had the inflammation in my colon that the pain in my joints started up. My rheumy even sent me back to the GI doc thinking I had crohn's but the GI really stood with the original diagnosis. I think it's pretty common to have inflammation in your joints if you have inflammation in the GI system. Good luck to you!
Sjogrens syndrome 2/15 via lip biopsy: Seronegative RA , fibromyalgia
colitis-resection 11/10, hashimoto's thyroiditis, morphea, GERD
Meds: plaquenil, synthroid, Januvia, nexium, restasis, estrogen patch, prometrium, VSL #3, evening primrose oil, Omega 3 supplement-Maxi Tears.

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 6/5/2017 7:33 AM (GMT -6)   
Thanks Jeanneac. I am glad the plaquanil is working for you. That did not help me at all. I am just so confused. All my blood tests are coming back negative for everything except a positive ana. My rheumy was convinced that my colitis was causing everything but my GI doctor says no since it is in remission. I even had a colonoscopy to confirm it. I just want to know what I have so I know it is not in my head (which I know but some don't believe I am in pain). I want to feel whole again. Sorry to rant but I just had a real rough weekend full of pain.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

BadDay
Forum Moderator


Date Joined Jan 2011
Total Posts : 1036
   Posted 6/11/2017 11:43 PM (GMT -6)   
Hi Lisa and welcome to the RA site
First Do Not think it is in your Head you have a Positive ANA so you have Some sort of Auto immune thing going on

and Yes you can have sero Neg RA as the Rheumatoid Factor can be Pos or Neg usually your esr will be elevated when there is inflammation
I have always had a very High RF and even with that it took years for them to agree on a diagnosis and even today I get "well its Auto immune and its RA with other things " So Don't be disheartened Just Keep Pushing Go to Different specialists for 2nd or 3rd opinions

Keep a Journal/Diary of your symptoms and if possible get copies of your blood results so you can say - look Monday my blood result was this and my symptoms were this.
Also when you keep your diary make it to the point day/date/time symptom and Take it with you to your Doctor visit Take it to the Specialists

I also had a Bad reaction to plaquenil had me in Hospital and ill for Months same with Humira
So Another Tip keep a Diary of any New Medications and keep a watch on your blood results also How You Feel and get on to any issues early Basically You be in Control Try to not be intimidated Remember its Your Body and You Know How You Feel .
FORUM MODERATOR Rheumatoid Arthritis for 30Yrs. Asthma,Fibromyalgia,Osteoperosis,Cervical Spondalosos,Degenerative Disc Disese,Disc Bulges, Diabetes,Heart SVT & AF, Sleep apnoea,Nocturnal Respiratory Failure,Panic Attacks,Anxiety
on; Methotrexate , Arava , Endone, Targin 20mg (oxycontin) , Prednisone, Metforman(Diabex) , Tambocor. Oxygen & Cpap, Prolia Injection ,Lyrica

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 6/13/2017 7:49 AM (GMT -6)   
Thank you. I went to my dermatologist for an annual check up. I explained to her that my cheeks and nose get red and my nose feels bumpy when I am in flourscent lights and/or sun. It looks like I am wearing blush. Since it is not super red or rash looking she just said I can't help you with that. It never itches but burns. I am starting to get it a bit on my arms and legs. Everyone thinks it is just sunburn. Being dismissed like that makes me second guess my symptoms. I know it is not in my head but with only a positive ana and no other positive blood results, it is hard to diagnose and most doctors write me off. I am going to the University of Penn in July so hopefully I will get some more answers. It is just super frustrating and depressing. I will write down all my symptoms and reactions to medications to take with me to Penn. I know alot of you have much worse symptoms and I am sorry to vent but no one else understands how I feel or how insane the medical world is.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.
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