Everything you say about Sero Neg is so true, V! I am sero neg severe aggresive myself. My doc has been GREAT. He told me that Sero Negs are his hardest patients to try and control and that they do not react as well to treatments as Sero Pos. I think we got the short end of the stick even in RA world! Such good advice you give as well to keep looking for a doctor that you trust and seems totally focused on how YOU are doing! Thanks for the great post, V!
Brad
your story has such a "good" example of what happens to many people with seronegative RA. It's really sad that so many doctors still don't have a clue your it although that line about your doctor having the personality of an alligator made me laugh out loud. 
I hope you told your PCP about the rheumatologist who misdiagnosed you with EIO so she doesn't refer anymore patients to him. He was a loony.
I'm just so happy that you have founda rheumatologist who knows what they're on about. Hopefully, it's the start of you reclaiming your life.
I don't know how I forgot this, but better late than never, I guess. I want to thank you, Lene. If you had not taught me about DMARDs and the importance of just not feeling better, but stopping joint destruction, I might have opted for pain pills and NSAIDs because I was so sick of bad doctors. And then......I might not have been able to walk at all. You are one of my heros! 
V
I am seronegative, as you say it is hard to get a diagnosis. Idid eventually, along with fibro. I have severe ra, just had first hip replacement, waiting for second and will need both knees done.
Every major joint is affected and many minor, all this has progressed steadily especially during the last four years, since I fell down a flight of steps and fractured my sacrum.
Fortunately I have a great rheumy somewhat cranky ortho doc, great gp or pcp as you say in the states.
I have failed many drugs but am taking methotrexate, prenisone, etc.
You have a lot on your plate, Wonderwoman. How long did it take for you to get a diagnosis? Sounds as though RA has done a number on your large joints. I, too, have RA in my large joints, and it is just as bad...or worse...than it is in my small joints. I wonder if that is common among us seronegative types. Thanks so much for your comment and for being part of our community.
V
Hi
It took about three years to get a diagnosis. I was told I was depressed, overweight [true], then that I just had fibro, which was given with a strong emphasis on the depression side of it.
When I fractured my sacrum xrays were taken of my pelvis which showed cysts, imflammation erosion and osteo. I was told not one but two hips would need replacing, but I was too young, so to put up with the pain. It took the three years from that to get the first hip done and they are making me wait longer for the second.
I am back to front as my hands and feet got really bad last after the big joints, and spine. I also have a chronic sinus infection and take many anti biotics, this is part of the ra, and prevents me from taking a biologic which might perhaps help me.
Oh, my....were you seeing rheumatologists? Why oh why are there so many bad rheumys out there?!? I have chronic sinus infections, but I have been doing much better since I started using saline washes. You might find some helpful hints in this post by Lene Andersen: An RA Beginner’s Guide: How to Manage Medication Side Effects
Thanks for the info, I have been using saline washes, steriod spray as well, all helps a bit but nothing stops it, I am waiting for surgery. I was mostly seeing regular docs until i got to a Rheumy first one was great, second one terrible, current one great. I've had more trouble with the ortho docs
I am so glad I came across your post. Knowing someone is experiencing the same problems with doctors makes me feel like I am not alone in this fight. I was finally diagnosed with Sero-Negative RA after going through many doctors even after 2 trips to Mayo Clinic in Arizona and a big medical center in Dallas. All it took was x-rays, and can you believe both of these centers didn't even consider taking any x-rays. All one Rheumatologist did at Mayo was look at my hands and toes and say I don't see any redness or swelling? Are you having any emotional problems or are you depressed lately, he asks. Right then I lost it and started crying uncontrollably because I was not being taken seriously. I left angry and had lost trust in doctors. I took it upon myself to go to a highly recommended rheumatologist where I am living to try and get a diagnoses, in which he called me back within an hour after leaving the clinic. My x-rays showed inflammation and erosion in several joints. He listened when I told him my symptoms, he treated me with respect and care, and that same day I finally had a diagnoses. I know there are great doctors out there, but I have went to some bad ones, in fact quite a lot in fact and that is a shame. Just goes to show you, you know your body better than anyone, and if someone doesn't take you seriously it affects even your emotional health like it did me, I was even starting to doubt myself because of someone elses stupidity. I used to respect all doctors until I realized they are just human and boy humans can be really disrespectful! Anyway thank you for your post, and I hope you do well on your treatments!
Hello, and thank you for sharing your story. I am really starting to believe that those of us who are seronegative get the short end of the stick from a lot of doctors. Why IS that? Maybe we take up too much of their time, or are we difficult to treat??? Whatever the reason, we do NOT deserve to be treated with disrespect. After all, we aren't going to a rheumy and paying their big bills for the "fun" of it. Thank you for your post. I, like you, am very leery of docs now. I check them out, and if I don't like them, I hit the road in search of another. Thank goodness Lene kept pushing me to get a second opinion. Hope you are well and your treatments are working for you. And I am so happy you found a good doc!
Peace,
V
A diagnoses makes the world of difference sometimes, even if it is not so great. It's even better knowing I have people like you to talk to. I felt a huge weight lifted off of me when I learned I had RA, but I cried at the same time. I was emotionally drained from the string of doctors I had been through and the long traveled roads to find the answers, but they were all worth it!
I think some doctors try to be too text book. They rely too much on blood work and some really do not pay attention to the patients symptoms. But there were three doctors I had that googled my symptoms on their computer while I sat and watched them, I felt good about that, at least they were trying to figure things out instead of looking over me real quick and assuming everything is fine. I know lab work is important for diagnosing all kinds of illnesses, but I think there is a lot more out there they don't know about. This is off topic, but have you had any neurological symptoms with your RA? My symptoms actually started this way. I have severe muscle twitching, tremors, tingling and numbness sometimes ect... I was thought to have had MS to begin with but my tests said no. Anyway I was just wondering. Thank you!
Hi, Jessielee,
I was afraid that I had MS in the beginning, too. My muscles were so weak...still weak, but I am starting to work on that! I have also had muscle twitches, but I haven't said anything to the doctor about it. My "twitches" get worse when I am overly tired. I have fibromyalgia, too, and I just sort of attributed all these strange symptoms to fibro and RA. I have a rheumy appointment in August. I may ask her about this symtom then. What did your doc say about all the muscle twitching? Do you notice the twitches more when you are overly tired?
Blessings,
V
Hi V,
Sorry it took so long to reply. I was told by a couple of docs that the neuro-symptoms were the result of the fibromyalgia that I have. I still think there is so much more going on besides that. One neurologist told me that I have essential tremors since I had a great-grandmother with them. I will lay in bed at night and it feels like my hole body is vibrating, and the muscle twitching is so bad sometimes I feel like my body is bubbling. My family members can see my muscles roll and twitch from the other side of the room. I worry because there have been times where I had stroke like symptoms where I have gotten confused and actually had trouble getting words out and speaking. My primary care doc was worried and wanted me to see another neurologist, so I went and she was examining me you know how they do reflex testing. Everytime they do that it causes my nerves to over react and I have crazy tremors where I actually jerk! And guess what she told me? She told me I needed to see a Psychiatrist, that it was all in my head! I was in shock, I left and walked out to my pickup and cried for 15 minutes or more before I could get up the strength to drive home. I was hysterical, angry that a so called respected doctor could even say that to a person that was having so many problems. My husband actually called the clinic administrator to let her know about the horrible appointmment I had. Needless to say he let her have it! I think that since my MRI from Mayo clinic 2 years before did not show anything, she just threw her hands up and based everything off of that, but the doctor at Mayo that was performing my muscle conduction study told me not to be surprised that nothing shows up for a long time. That has stuck with me ever since. My tests may not show MS, but I am almost positive that I have it. I have done research myself and I have almost every symptom possible. That is just my opinion. We know our bodies better than anything, My husband and I have decided that waiting until I have a serious spell is the only way I am going to get medical attention, at the ER! My trust in a lot of doctors is almost gone, so whatever happens to me will just have to be. I hope you get more clear anwers than I have. Thank you for your input and let me know how everything turns out okay!
Hi Jessie,
I'm so sorry to hear that you've had such a difficult time with doctors, neurologists specifically. Your experience with the more recent neuro certainly sounds infuriating. Even if the doctor didn't suspect MS based on your history or symptoms, she didn't have to be so abrupt.
First off, I think you should try a different neurologist. To find one at a clinic which specializes in MS near you, search this MS Center Directory.
One little piece of advice, avoid telling the neuro that you have "all the symptoms of MS" as this will likely cause resistance from the doctor. It is rare that anybody experiences "all" the symptoms of MS during their disease progression; rare, but not impossible. Folks with MS also usually do not experience all their personal symptoms at one time. They can fluctuate widely.
[This suggestion is just based on a discussion I had with my nurse practitioner when I had a chance to interview her regarding patients who were difficult to diagnose or not satisfying the diagnosis criteria fully.]
Is there anything which your primary doctor has offered as treatment for your current symptoms? What does your rheumatologist say about all of this?
Is there anything I can help you with regarding the suspected MS?
P.S. Fortunately I was already under the care of a licensed clinical social worker (ie. psychologist) in conjunction with a psychiatrist when I went through the diagnosis process for MS. It was never suggested that the MS was "all in my head" other than to look for lesions.
And yes, it is very possible that you could have developed any number of lesions in two years. A new round of MRI scans should be in order, along with other testing to try to eliminate MS mimickers.
Intention tremor, brisk reflexes, unusual sensations, and cognitive difficulties can all be MS-related symptoms. But they could be caused by other things too. THAT is the difficulty of diagnosing MS.
I so very much appreciate your input! I am terrified of even making an appointment with another neurologist! The one doctor that made me angry told me that another MRI would be not well, not necessary since the one at Mayo a couple of years before showed nothing! She made me feel horrible, and like I said she made it to where I was starting to doubt myself, but that is not right, especially when the symptoms are there and are very much real. They are not going away, they come and go sometimes even very terrifying. I just wonder if it was possible, that inflammation from RA could possibly be causing pressure on certain nerves that could be causing the neuro symptoms. My rheumatologist says I definately need to see a neurologist, but with my last experience I don't want to put myself in that position again. I don't think I could take it. You are right about not mentioning the symptoms of MS. I never have, I have had several doctors suspect MS, even diagnosed me with probable MS, but nothing on MRI. I think I am just going to deal with it as long as I can before I make that leap again. I have tried to take two different meds for RA that have had caused reactions of severe electrical shock like pains through my body, so the only thing I can tolerate is Advil for the RA. I don't understand, this all started after another bout of mononucleoisis that I had (for the third time) and I had the shingles in December that made the nerve problems even worse. Maybe I will have more answers sometime soon, for right now seeking another neurologist is out of the question for me. Thank you for your response, I am glad for all the info you can give me!
There are a couple of things possibly going on. Yes, RA swelling can indeed put pressure on nerves. For instance, my "carpal tunnel syndrome" was really undiagnosed RA. The swelling in my wrists caused horrible pain, shocks, and disability at the time.
If a doctor at any point dx you as "probable MS", then that is something to carry with you and mention to any new doctors. Just as I carried around the initial diagnosis of "optic neuritis" for years before MS was officially diagnosed.
The anti-TNF drugs used for RA (eg. Enbrel, Remicade, Simponi, Cimzia, Humira, etc) can cause neurological symptoms and are contraindicated for patients who are already dx with a demyelinating disease.
Over the years participating in online communities, I have learned that the double-diagnosis of MS and RA is less rare than it was once thought. I've met several other patients who have both of these diseases. Having one will often delay the diagnosis of the other, however, due to overlapping and confusing symptoms.
If you private message me where you live, I can run a quick check (or ask around) to see if there are any recommended neuros near you. If you live within 2-3 hours of Washington DC, I would highly recommend my own doctor.
Regarding the left-over pain from shingles, are you taking neurotin/gabapentin to combat that? I started taking neurontin for the post-shingles nerve pain and how I take it daily for MS-related nerve pain. It really does calm down the shocks, buzzes, numbness, sharp pokes, tingling pain.
You may want to talk to your rheumatologist about other treatment options which are not anti-TNF drugs. There are a few used for RA. I am currently using Rituxan, but Orencia, Actemra, and Kineret are still on the table I believe. And others are being studied.
Don't give up yet. Oh, and it's perfectly okay to tell a doctor that "previous doctors had suspected MS, but I didn't fit the diagnosis criteria at the time. These are my current symptoms. Where do we go from here?"
A "good" neuro will want to put you through what I call the "silly human tricks." Check reflexes, walk normally, heel-toe, on tiptoes, on heels, stand with feet together eyes closed, touch my nose-touch your nose-close eyes and continue, follow my finger, can you feel the tuning fork, is this sharp or dull (while being poked with safety pin), etc., etc.
A "good" neuro would then want to run lots of blood tests. Perhaps set up Evoked Potential testing (typically 3 different tests), new MRI scans of the brain and cervical spine given with and without contrast. Maybe an EMG. And if all of this is still inconclusive, then the icky lumbar puncture. All of this is the typical diagnosis process for MS.
It can be a lengthy process and the diagnosis criteria has continued to be tweaked and updated over the years. In fact, I would have received my diagnosis more quickly under the current criteria. Instead I had to wait until new lesions showed up on a follow-up MRI scan which was given 2-3 months later.
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I also have sero-negative RA dx after my hands swelling and turning beet red. The CRP blood test came back 13. I thought my PCP was going to pass out. Instant referral. I thought wow I have to really act out to get the belief I needed all along. Like you I knew. I also firmly believe in finding a rheumy that you can trust. Nothing helps like that does. I am glad you are better. The one concern I have is the misconception sero negative pts are "less severe" I think that is purely subjective and I have yet to make a full week between flares.
Thank you for your comment. I do believe those of us with "normal" blood tests have a difficult time getting any doctors to take our pain seriously. I have decided that we are not "easy" patients. I have read that sero-negative patients are harder to treat because the course of their disease cannot be tracked by blood tests. Contrary to popular "wisdom", I believe that most people who go to a doctor for help are not chronic complainers. I, too, have never had a week without a flare. I have a good day about every ten days. The rest are ho hum, unless I don't get enough rest or get streesed out, then the flare gets worse. Honestly, it feels like one continuous flare doesn't it? I hope it gets better for both of us eventually. How long have you been diagnosed with RA?