Seronegative and Out of Luck

posted in: treatment | 19
Smoke and Mirrors @ 2013 Jane Waterman
Smoke and Mirrors @ 2013 Jane Waterman

On August 21st, I finally got to see my new rheumatologist – some four or so months after the referral was made. I haven’t had a rheumatologist since my first one retired in 2009 – I don’t count the appointment with the doctor who rejected my diagnosis immediately when he heard I was seronegative*. Well, it turns out I likely can’t count this doctor either. I don’t know what it is about this magical profession, but I have struck out on real help from 2 out of 3 rheumatologists.

*In a nutshell, someone is seronegative when they do not test positive in a blood test for the antibodies specific to a disease, but they show all the symptoms of the active disease. Here is a really nice intro to seronegativity from a rheumatoid arthritis patient.


I fill out the doctor’s introduction sheet, and notice he doesn’t ask for a fifth of the information my first rheumatologist asked for. Little wonder he had asked me to arrive fifteen minutes early instead of at least half an hour.

The first thing the new doctor says is, “Let’s not regard what your last doctor said.” As soon as I hear those words, I know the diagnosis I’ve lived with for 11 years is in question. Surely the practice should be to thoroughly interview the patient, interpret all the evidence, request new tests as needed, and make a decision based on that? If a diagnosis needs to be revised, then it should be done on careful consideration with the patient and not on a whim. Certainly not in the opening sentence of communication.

I know I have no specific marker of disease, but there is enough inflammatory evidence to confirm something is severely wrong with me, which is borne out by the symptoms I live with daily.

He asks if I have had a lip biopsy. I can see where this is going. I say no. I’d do it if there’s a possibility of getting “proof”, but apparently it’s not on the table. He then asks why the last doctor said I had Sjogren’s syndrome.

I say, “Based on the symptoms”. (Like the years of dry eyes, sinus infections, mouth ulcers, tooth decay and loss, throat infections, pneumonia/bronchitis, joint pain, cutaneous vasculitis and all those other things my good friend, Venus, has.)

He doesn’t ask what the symptoms are. I have to tell him about the zero mm Schirmer’s test. I have to tell him about the cutaneous vasculitis. He seems mildly interested then. “Let’s see if it’s affecting your kidneys. You do have blood and protein in your urine.” He says he’ll send me off with blood tests to see if I “have an autoimmune disease”.

I hear myself say distantly, “I’ve been sick for 23 years. I’m pretty sure I have an autoimmune disease.”

He comes back with, “That’s what the blood tests are for. And if they come back negative, that’s good news. Then, I’ll treat you for your fibromyalgia.” He seems keen to re-diagnose that, and takes a minute to press all the trigger points.

I see the window is closing. I ask the question I’ve been wanting to ask for over a year now. “Is there a possibility of trying a biologic drug?” I’ve read some good results about the use of rituximab for the treatment of Sjogren’s fatigue – one of the worst symptoms of my disease. I think I could manage better if the crushing fatigue was under control.

He looks at me with disdain. “You don’t treat fatigue with with a biologic, you treat an autoimmune disease with one.”

I feel like I’m in a foreign land, where I’m speaking a different language to the doctor. You begin to understand why many people set low expectations for a new doctor visit. I went in with neutral expectations. I came out with low ones.

The first appointment lasted 15 minutes.

I haven’t been for the blood tests yet. I’m pretty sure that most of them will be negative, except for the C-Reactive Protein (CRP), which will be about 20 mg/L. I don’t dare hold the strange hope that I will be anything but seronegative. That would be too cut-and-dried. I’m seronegative and out of luck.

Besides, I’ve got a history of not tolerating the treatments of choice for Sjogren’s, so maybe it’s a moot point if he believes I have it or not anyway.

I know many doctors don’t believe what they can’t see on a diagnostic test. Like the acute pain I’ve had in my abdomen for 2 and a half years. I take it now that the gallstones have grown big enough to be seen on an ultrasound. (Apparently when you are overweight, things are hard to see. I had one ultrasound interpretation full of comments that boiled down to “It’s difficult to see anything”.) And it’s really hard to make doctors believe that obesity was an early symptom of my disease (after 24 years of being a healthy weight). I’ll be seeing a general surgeon next week (only thanks to a locum doctor, not my GP). Do I dare hope the surgeon will agree to explore why I need to take morphine for pain sometimes? Do I dare hope that I won’t live in pain for the rest of my days?

I’ll get those tests done. However, I don’ t know though that I’ll travel over an hour to the next appointment, and exhaust myself for the day after, just to hear this rheumatologist say that I don’t have an autoimmune disease – and perhaps hand me an expensive prescription for a fibromyalgia drug of doubtful efficacy. My naturopath has already told me that Lyrica (something my GP prescribed) would do me way more harm than good, and seeing as she listens to me – the patient – I trust my naturopath a whole lot more. She got me off prescription antidepressants for the first time in over 15 years. She got my digestive system moving again with ox bile, when all the doctors would do was prescribe me mountains of expensive laxatives. Yes, I trust her.

Seeing a new doctor should provide one with new information. It shouldn’t subtract from your knowledge. I consider it a danger sign that the first thing a new doctor says is, “Let’s not regard what your last doctor said.” When that has been said, before any new tests have been done, before any symptoms have been discussed, you know that he doesn’t believe in seronegative Sjogren’s disease –  no matter that your quality of life has been severely compromised for over 23 years. Perhaps ego is more important. At that moment, you know the new relationship doesn’t have much of a chance.

You’ll keep fighting the invisible illness – as you know that there are many other patients in the same boat as you. The Sjogren’s Syndrome Foundation says that 70% of patients have a positive ANA (I have had a mildly positive result, at 1:320, but apparently that’s not enough). 70% are positive for SS-A and 40% are positive for SS-BB antibodies. That means around 30% of them are seronegative (30% of 4 million Americans with Sjogren’s = 1.2 million seronegative Americans; 30% of 430,000 Canadians with Sjogren’s = 129,000 seronegative Canadians). I do have the elevated ESR and elevated immunoglobulins, but that’s not enough for seronegative discriminating rheumatologists, and I’m batting at 2 out of 3 so far.

So, although I have a new rheumatologist, I don’t really, and I know from the low rheumatologist density here that I can’t ask to see possibly the only other option where I live. They consider that “doctor shopping” and although I pay for my public health insurance, I know from past experience that I don’t have that right. That means I’m on my own, and I’ll just keep treating the disease symptomatically, with eye drops and nasal gels and mouth gels as needed. The dryness will get worse as I age, but then the doctors will start saying (as they have already) that it’s just old age. I’m 47.

For the first time in 23 years of sickness though, I believe my own experience – not that of a doctor who saw me for 15 minutes. I know my retired rheumy made a considered diagnosis over many appointments, many tests, and many years. Seronegative autoimmune disease is not a magical illness. It’s real.

Blessings,
Jane

19 Responses

  1. Catherine Gutierrez
    | Reply

    Jane,
    You have been through so much. I just don't get it. We who are sick, seem to have to prove to drs that we are.
    I have a very good nurse practitioner, who treats me. I've seen 3 rheumatologist. They all say I have fibro/ cfids and now RA. But the last one said excerise, and you'll be well! I wish I could wave a magic wand and make us both better.
    Always Catherine

    • Jane Waterman
      | Reply

      August 31, 2013 at 8:48 am

      Repost – as I posted it in the wrong place! :)

      *Hugs*, Catherine. I’m glad you’ve got one good medical practitioner in your corner. I feel that way about my naturopath, even though I don’t go to see her that often. When I do go, I always feel I am heard and that she is trying to heal me.

      I have heard the exercise thing too. Even from a very understanding doctor. At the time I was struggling to get my part-time work done, and he wanted me to walk an hour a day. I was in a flare, and the walk would mean that I’d have to sleep for a few hours afterwards. When you have to do some work to make a living, you can’t afford to lose time in a day like that. At the moment, Carmen and I are getting more exercise, but it’s one of those things that varies, depending on how you feel. It’s certainly not a cure! When I was younger I would push myself to do a lot of exercise, and I was always permanently exhausted. Well, more than usual. :)

      I know how you feel, hon. So many of my friends suffer such terrible pain. I wish there was a way to ease suffering. For me, I find it easier knowing that I have such loving and supportive friends “across the miles”. You all make a world of difference to me. <3

      Lots of love,
      Jane

  2. Joan Bloch
    | Reply

    Jane I can't believe all these closed minded morons. I know I've said it before but I really wish you had my Rheumy. She's a Gem. For my it was my ENT specialist that referred me to her as he suspected SS. And she confirmed it. Have you tried Gabapentin for ur FM ? Crap I'm having a hot flash as I'm typing. This last week I started getting them. Yup I think I'm going through Mmenopause. I had a partial hysterectomy in the 80s so none of the tell tale signs to go by like missed periods. My doc is going to check me over and do a blood test. When I go in to se him next week.

    • blackbirdatnight
      | Reply

      Hi Joan,

      I wish I could see her too! For now, I'll just muddle on as I can. As for Gabapentin, unfortunately I had severe side effects (depressed mood), as I talked about in this blog post: https://blackbirdatnight.com/grasping-for-answers/… so it's not a helpful med for me. I hope it is helpful for you. I likewise had an emergency total hysterectomy in 2008, so I'm not sure where I am with menopause. I just found out I had a vitamin D deficiency, which apparently means increased risk for osteoporosis, so the locum GP has got me taking supplements now. Hopefully I haven't had this too long. I hope you're able to get some answers and help with the hot flashes. I'm sure my naturopath would have an answer for that. She's got an answer for so many things!

      Blessings and hugs,
      Jane

  3. Joan
    | Reply

    Oh wasn't it Lyrica you mentioned ? Gabapentin is a different one. Thank goodness for your naturopath. Xx

    • blackbirdatnight
      | Reply

      I was prescribed Lyrica, hon, but didn't take it after listening to what my naturopath had to say. I think Lyrica is pregabalin, and may be related to Gabapentin. I'll have to look into that sometime and see if the side effect profile is different for the two meds.

      *hugs*
      xxxx

  4. Irina
    | Reply

    Jane, I’m sorry you’re Rheumatologist was beyond unhelpful. 15 minutes?? That’s close to insurance fraud, if his office actually bills an insurance for a so called comprehensive exam of a new patient.

    I am also seronegative, but I blessed to have an amazing primary care physician who sees the entire family- the old fashioned family doctor. I stopped seeing pediatricians for example- my son has Asperger’s.

    At some point we decided that we need a family doctor which has the added benefit that one doctor sees my entire family- and therefore knows the family dynamics.

    It was only because of that insight into my family that my Doctor did.not.stop looking. Not only was I literally falling apart in 3 three years- but it was of great help when my loving husband was also able to confirm my rapid decline.

    Just like you my blood tests did not show RA – yet I was no longer functioning, inconstant pain from flu like symptoms, rapidly declining and had massive neurological issues.

    Sorry that this is becoming longer, but I am trying to share how I eventually got diagnosed.

    I first saw my family doctor with constant bronchitis that we tried to get under control. Then I noticed an awful depression setting in, I was no longer myself and willing to do just about anything. I did start an antidepressant and as much as I did not like the idea- within 3 days at least my own self, I, came back again.

    I cannot describe the daily pain I was living in. I also contracted H1N1- and never truly recovered. Six months of agony. My husband could barely get me awake.

    My doctor had the hunch that my depression might be the sign for an underlying disease- and sent me to a wonderful specialist in sleep medicine. Sure enough I was narcoleptic. I finally was able to stay awake – but the pain was still there. My doctor then decided that I needed to see a neurologist since he himself did not believe anymore that his own diagnosis of ‘fibromyalgia’ was correct.

    I actually was and still am on Lyrica. I was in so much pain, that I tired it. It is not a miracle drug, but without it I would be bedridden and crying from the pain.

    I was then referred to a Neurologist who insisted on a lumbar puncture the same day- now! Right now!

    Since being in pain and a needle in your spine sounds like a torture method to someone already in pain, my neurogist ordered my spinal tab to be performed under sedation. Still awake but not consciously suffering.

    The lumbar puncture showed black on white Sjoegren’s and Rheumatoid Arthritis. I finally was given the confirmation, no, you’re not crazy.

    I don’t know how many blood tests I have done- but being seronegative meant that the lumbar puncture was the only way to get ‘proof.’

    I suffered some complications from the lumbar puncture itself- every post puncture issue know – I had it. Yet the spinal tap was the only way for the physicians to ‘understand’ why my foot was swollen in the morning, why I felt these flulike symptoms.

    Heck, before that diagnosis my neurological issues even landed me in a stroke unit for 2 days- with arrogant doctors from hell declaring me all healthy after I regained my ability to speak! I have classic issues swallowing and all that other fun stuff. I got my diagnosis last week and am now waiting to see a Rheumatogist familiar with Snoegren’s and RA that is severe but does not show up in typical fashion in blood tests.

    The lumbar puncture, as nasty as it was- was a lifesaver as I could no longer envision myself suffering for another 50 years in pain.

    I know have lab results, ‘proof’, that something is indeed very wrong with me.

    I decided to share my odyssee here, since it simy hurts my very soul to read

    • blackbirdatnight
      | Reply

      Hi Irina,

      I'm sorry that I may have replied incorrectly and you didn't get my response to your comment (see below). Please disregard this if you did.

      Blessings, Jane

      Dear Irina,

      Thank you so much for sharing your story. I find it so validating and helpful on so many levels. What a journey you have been on!

      I agree that the recent rheumatologist's behaviour is almost fraudulent. There's no way he got an accurate picture of my health in 15 minutes. My GP is asking if I have done the follow-up appointment yet, and I was able to say not yet – there's too much other stuff going on. Which is true, but honestly I have no desire to go back all that way for a ten minute appointment where he tells me I don't have an autoimmune disease and only have fibromyalgia. Seeing as my ESR and CRP blood tests have been highly elevated for 23 years, and they are not elevated in fibro alone, I know he is wrong.

      I have done some reading and believe that Lyrica and Gabapentin are related. The side effect profile sounds very similar. The Gabapentin made me think about suicide, so I know it is not a good med for me, and I suspect the Lyrica will be the same. I'm not prepared to risk it at the moment. I guess it depends if I come out of my gallbladder surgery and nothing has changed. I know I can't live with this pain all my life, and seeing as my GP will do nothing but give me Lyrica, I may not have a choice eventually. It's not a good choice though. :( I'm glad to hear that it has helped you regain some quality of life. Whatever helps, helps! *hugs*

      Your primary care physician sounds amazing! How wonderful it is to have the support of a doctor who talks to you, asks questions, and keeps fighting for your health! My naturopath is like that, but there is only so much that she can do, and because I have no extended health coverage, it's expensive. I am so grateful to her for finally getting me off Prozac after some 22 years on different antidepressants. It's nice to have an alternative that really works.

      A naturopath also got me onto a natural immune support that really helped protect me from constant bronchitis and pneumonia. My lungs are really scarred on X-rays, but of course, no doctor seems to think that's any evidence of a disease process. It's thanks to the naturopath I don't go through that hell every winter like some people do.

      How awful that you got the H1N1 virus. That must have been terrifying! When I first got ill, it was a similarly debilitating illness. One doctor called it giardia. I think it might have been food poisoning. My story was quite like that of Laura Hillenbrand, a writer who developed CFS overnight. I was literally well one day and sick the next, for the rest of my life. I had 8 months of very acute symptoms, and intense depression too. Your story reinforces for me that depression seems to be a big part of the disease process, not an incidental illness, but an actual symptom.

      I would be really interested to know how the doctors used the lumbar puncture to diagnose your illness. I don't think I have any hope of getting any of my doctors to do that, but I'm extremely curious to know how they make a diagnosis that way. In fact, I would love you to share your story in a guest post if you are interested. I would love to make a series of stories about people living with Sjogren's and related illnesses and how they were diagnosed and treated. Please let me know if you would like to take part, and I'll contact you by email. You can leave a note here, or through the contact form on the "About Me" page on this site.

      Thanks again, Irina. Your story is very validating, and I'm glad to know that there are patients who are seronegative who had a happier ending. I think it gives hope to all of us!

      Many blessings,
      Jane

  5. Irina
    | Reply

    Sorry, for some reason I could not finish my sentence.

    Jane, I decided to post a comment when reading about your odyssey from hell. I haven’t even started actual treatment yet- but at least the spinal tab confirmed what no other test was able to confirm.

    Before I have seen every chiropractor, osteopath and naturopath in the phone book. To no avail. I have a fully stocked natural remedy cabinet that seems to help everyone but me.

    I wish everyone nothing but health and some form of ‘success’ in finally getting the diagnosis and subsequent treatment they so desperately need. Keep pushing on the good days until you find the answers you deserve!

    Love,

    Seronegative, narcoleptic, Sjoegren’s+ Rheumatoid Arthritis Irina

  6. Irina
    | Reply

    And my apologies for my grammatical mess- know/now, you’re/your, lol, I’m just REALLY, really tired.

  7. Heather
    | Reply

    Hi Jane. I’m glad I came across your site in my googling, and I just wanted to reach out and say thank you for making me feel less alone.

    I have been chronically, constantly ill for about six years, since I was 34 years old. I was healthy and active, and then one day the pain started and my life stopped. I look like a normal person from my outward appearance — or at least I looked like my normal self until most of my hair fell out over the last two years due to autoimmune inflammation, and now I look like someone else’s normal. I struggle every day with debilitating pain and utter exhaustion and a host of other physical conditions, as well as the mental anguish of being unable to do so many ordinary things because of my condition, not to mention the grief over anything slightly less ordinary I might have dreamed about. And there’s the deeply felt isolation.

    I am seronegative and have yet to find a doctor to truly try to help me. I continue looking for a rheumatologist who will listen and put the pieces together and actually THINK instead of relying on a piece of paper to give them the “proof.” At this point I’d be a better doctor than most I have met, and I’ve never been to medical school! Can they not read the same information that we read? But I can’t do for myself what a good doctor could. So the hunt continues. It’s so hard to wait.

    I feel all alone in this all the time, just barely existing in my own tiny bubble, getting through the days. I cry at least a little bit every day, and some days a lot, from the entirety of the situation. It seems the only people who can understand what it is like to struggle for years with debilitating illness, being dismissed and ignored by the people who are supposed to help you, having to constantly defend and justify yourself, being your own only real advocate while your body and life and future deteriorate, are the people who have experienced it themselves. Thank you for putting your voice out there and reaching out to help.

    • Jane Waterman
      | Reply

      Hi Heather,

      Thanks for reaching out in your comment, hon. I do understand and hear your frustrations. I was 24 when I got ill, and when I look back, I keep thinking how it could have been handled so differently by doctors. I was so often dismissed and ignored, and the only symptom they seemed to take seriously was the depression I felt, which was as much a symptom of all the losses you’ve described as anything else. It was so crazy-making to try to get an answer for why my life had changed overnight and to have this personal disaster completely minimized.

      I am glad that my post helped you to feel not so alone dealing with this. *hugs* There are thousands and thousands of us out here, dealing with the same type of issues. I’ve heard from a lot of people through blogging about this experience, and I’ve done a lot of googling of my own. It seems that it is difficult to find a rheumatologist who will commit to treating the problem seriously. Until my first rheumatologist retired, I didn’t realize how lucky I was that at least he was trying to help me! Since then, the two rheumatologists I’ve seen have both been dismissive, and my GP has listened to them! She can’t even pronounce Sjogren’s, and all she wants is for me to try Lyrica – a drug that I am sure will make my depression worse.

      Like you, I feel I know a lot more about Sjogren’s and related disorders than many doctors, but even if I can’t make doctors listen to me, I feel that knowledge is important. Even if I can’t really tolerate the treatments, I can try to understand my experience. Honestly, the most validating part of this journey is talking to others who are going through the same things. You, like so many others, know exactly what it’s like to be dealing with something that is all but invisible, but has decimated your life. I still have hope that there are things I can do to help myself – dietary changes, work with my naturopath who does take my condition seriously, and yes, work with my counsellor, who is very compassionate and helps me keep it all together.

      Know that you’re not alone. I don’t have the answers, but you can reach out to me anytime. If it helps to vent, ask questions, share knowledge, know that you are most welcome to. I am also on Facebook, if you’d like to reach out there: https://www.facebook.com/BlackbirdAtNight

      Take good care of you, and thanks again for writing.

      Many blessings,
      Jane

      • Heather
        | Reply

        Hi again. I have some experience with Lyrica, and thought I’d offer it in case it’s helpful as you weigh your options (or only option, as it may be). It’s great that it has helped Irina, and I know it is worthwhile for some people, but it also can be dangerous for some people. It permanently injured me, and the process of trying it was terrifying. (And the emotional trauma of that rollercoaster of hope and crushing disappointment, grief reborn, is a whole other blog post.) (And by the way, yes, I know I am long-winded.) General disclaimer: I offer my thoughts here purely in the spirit of openness support for anyone present, to be taken with whatever size grain of salt you wish.

        A neurologist diagnosed me with fibromyalgia in June 2012 (a misdiagnosis or partial diagnosis at best, not sure which, but again, that’s a whole other story). She was obviously extremely intelligent, and she took the time to really explain to me what FM meant in terms of neurochemistry and genes, and then she promised me this glowing, golden beam of hope and redemption that should never have been promised: Lyrica would give me my life back and provide a significant recovery.

        I followed her dosing instructions meticulously, to try to avoid the daily hangover situation and my established hypersensitivity to many drugs. My pain began worsening little by little, and at my follow-up appointment I asked her 1) if Lyrica could make my pain worse and 2) if it could cause me any permanent damage. She said no and no. She was unwavering.

        By the time I had ramped up to taking an entire capsule, though, I was scared. Full-on gripped by pure, raw fear. I knew what was happening to me, without question, regardless of what the neurologist had said. My pain was intensifying by the day, my mobility was decreasing in turn, and my resulting stress levels had surpassed their maximum and burst into actual panic. Should I try to believe the neurologist anyway? Should I wait it out for a while to see what would happen even if I couldn’t believe her? Could she somehow be right even though every cell of my being said she wasn’t?

        What it came down to for me was the risk of becoming permanently worse. The risk of those newly soaring pain levels becoming the new normal. I knew I couldn’t take that risk any further. I couldn’t lift my left arm, I was confined to the couch, raw with pain, helpless, in tears. Up until that point I had always still been able to take care of myself – to bathe myself, dress myself, feed myself, grimace through the grocery store and limp back up the stairs. My life sucked, sure, but would I rather have that known level of misery forevermore and retain what small capabilities and enjoyment of the little things I had, or risk losing what I still had for the tiniest chance of some elusive improvement? For me, the answer was clear.

        What really cemented my confidence, though, was a phone conversation with a pharmacist I had found helpful once before. She had a rational, outside perspective and an unbiased opinion about the drug based on both science and a much broader experience with patients than a physician can provide. She helped me see that I had already answered my own questions, and no, I was not overreacting. I had only been taking the drug for a few weeks, in a tiny amount (I was emptying the capsules and dividing the powder into mini doses, per the neuro’s direction), and it wasn’t just not helping me, it was making me much worse. She pointed out that while Lyrica affects the nerves, that does not necessarily mean it will affect the nerves in a positive way. It can just as easily have a negative effect. And yes, the effects also can be permanent. She also pointed out that the extreme stress the Lyrica was causing me was completely counterproductive and a sufficient reason in itself that this was not the drug for me. She reminded me that I am the one and only person who has to live with the side effects and consequences of any drug I take, not the doctor who prescribes it to me.

        Basically, the lowdown I got was this: Lyrica does help some people. Many people cannot tolerate the side effects, which tend to be severe. Increased pain or worsening of disease symptoms is pretty common and can continue after the drug is stopped, sometimes permanently. Even people who are helped by Lyrica typically contend with the side effects, and most of them have only a small or modest improvement. There are exceptions, of course, but in her words, “It’s a difficult drug.”

        After I weened off the Lyrica, most of my pain levels returned to their pre-Lyrica levels, but my shoulders did not. They improved somewhat but were permanently damaged. Shortly afterward I began to have new and worse pain in some other areas, which I have not associated with Lyrica, but there is no way to know for sure its full effect.

        In general, I do think it can be helpful sometimes to talk to an experienced pharmacist. If you want the skinny on a drug, and the googling just can’t quite give an answer, you need a pharmacist, not a doctor. In my experience, an experienced and trustworthy (by your own estimation) pharmacist is a more accurate and knowledgeable source of information about drugs than a physician. It’s the pharmacist’s job to learn about drugs, and they see more patients coming through their pharmacy with the same prescription you’ve been given than any one doctor (and yes, I just used the word ‘experience’ several times in a row). They know the chemistry, it’s their job. They hear and read the gamut of questions and complaints and new findings, including a lot of first-hand accounts from patients, and they are not operating from that place of egocentric arrogance or defensive responsibility that doctors are.

        Doctors often don’t know very much about the drugs they prescribe. They seem to mostly get their information about risks and side effects from the same sources that are available to us, and they don’t have anything to add. Also, they function almost solely based on probabilities, not logic (i.e., if something is unlikely, they equate that with impossible, whether the issue is side effects or seronegative disease).

        I think that we all need to really listen to ourselves first and foremost. If you have a sense of something based on your symptoms, experience, research, etc., you are probably right, and you do know what’s best for you.

        With gratitude,
        Heather

        • Jane Waterman
          | Reply

          Dear Heather,

          Thank you for your bravery and openness in sharing your story. I think many can relate to the raised and then dashed hopes of a promise of help. It’s clear that these meds are not all they’re advertised to be. Your advice to seek input from an experienced pharmacist is sound, and certainly gels with my experiences too. Unfortunately I feel a heavy dose of cynicism about the relationship between doctors and big pharma. In some cases, it’s just the sweetening of “free samples”, and in other cases I’m certain there’s kickbacks and other things going on.

          Reading straight-shooting reports like yours is really a huge help for other patients in letting them know what they might expect at the other end of the spectrum. Elsewhere in this blog, I have talked about Gabapentin and how it made me suicidal. Lyrica is presently in an advertising blitz on TV and guess what one of the top side effects are? Suicidal ideation and mood changes! The two drugs are supposedly related, so I’m not anticipating a better result.

          Like you, I have a demonstrated sensitivity to many drugs including Prednisone, Plaquenil and Gabapentin. In all cases, these meds seriously worsened my depression for little benefit in modifying the disease process. In many cases, I couldn’t manage a therapeutic dose, the side effects were so severe.

          Heather, I don’t know if you have your own blog, but I welcome you to contribute a guest post with your experiences with seronegative autoimmune disease. I think you’ll find many of us have been diagnosed with fibromyalgia (I have too), but in fibromyalgia certain inflammatory blood tests like ESR and CRP are not elevated. They are in my case, and to me that’s the proof I need that this is not “just” fibromyalgia, as my recent rheumatologist visit was leaning. I’m happy to give a platform to others to share their experiences.

          Thanks again for this comprehensive post, Heather. I know many people will find it helpful. I did!

          Take care,
          Jane

  8. Shelly Webb
    | Reply

    I wish doctors were required to read stories like yours and like what others have posted here.

    Two weeks before my first child was born, I went hiking in the woods. Two weeks after his birth, I elected to take the stairs at the parking garage and skipped every other stair. I felt great, powerful. I loved being physical–it was a way to get rid of a lot of negative energy when I was depressed, and I enjoyed throwing myself into challenges like house remodeling and landscaping.

    Then I got sick.I started running a fever, but maybe the body pain showed up before it did. The fever more or less stayed for a month. The pain in my body took up residence.

    I discovered by accident that steroids have the potential for me to live relatively normally, versus being bedridden. If it were pain only, perhaps it wouldn’t be so bad, but my muscles stiffen severely after 10-15 minutes of inactivity and I without the steroid I am slower than most 80-year-olds I know. My husband has to help me roll over in bed.

    Doctors who have seen me in the ER would treat me with suspicion, like I was a drug seeker, until they learned that the drug I wanted was a steroid. I’ve never had a problem with ER docs providing me with a steroid dose pack!

    But my blood results are almost always negative. I had about 4 weeks of relief after my two daughters were born, but otherwise the low-dose of dexamethasone I take allows me to function almost adequately.

    I sometimes have to cancel appointments because I realize I don’t have the stamina to go. Or if I do, I still have to make sure I can care for the kids after the appointment. I have learned not to volunteer, lest I end up with a flare that will label me as unreliable.

    But no diagnosis. Last month, though, I was off the steroid for a week. Noticed my mouth was so dry, and my eyes (already problems with dryness, there) needed watered multiple times. Then I recalled the salivary duct stone the dentist found this summer under my tongue. It wasn’t completely blocking the duct and I was able to work it out myself without an oral surgeon’s help, but it did make me wonder if Sjögren’s is the problem. But yes, I need a doctor who can see what is in front of him/her instead of relying on only blood tests that are already proven not to be 100% reliable. And because of being on the dexamethasone, there is a discrepancy between what I tell them and how bad things can be. I told my current GP I’ll go off the steroid for two weeks, tops, if my symptoms/signs need to be observed. Any more than that and my husband would probably have to take time from work to care for me and the kids.

    Why I’m telling you all this is anyone’s guess; I suppose it is good to know we are not alone. Maybe someday someone vital to our health will hear and have the influence we need for us to get access to better care.

    • Jane Waterman
      | Reply

      Hi Shelly,

      Thanks for sharing your story. I think why we share is to combat that feeling of invisibility that medical practitioners and conventional medicine has made us to feel, not to mention the well-wishing of family, friends, and associates who usually see us on the times we WERE able to make it out and look our best, even if that was an isolated incident. Historical interactions tell me not to make a habit of looking as crappy as I feel, because then I get a well-intentioned but devastating avalanche of advise like “pick yourself up”, “smile and the world smiles with you”, “you think YOU’RE sick? you should hear about….” and so on.

      So like many people with chronic illness, I try to look my best on the times I can go out, even if I feel like I’m almost dying inside, like now when depression is kicking my ass. I find it astonishing that I can smile and even crack jokes with my surface facade, while the underneath me is almost immobilized with psychic pain.

      As much as it pains me to hear other’s struggles at times, I believe this getting together and sharing our stories is a kind of revolutionary act. It means we are saying things as they really are for us, and it is my hope that a medical student, alternative practitioner, if not a full blown MD, will come along and read these stories and say, aha, these women aren’t all hysterical: they are reporting some consistent symptoms and some symptoms we hadn’t considered before, and I’d like to look into it. Maybe in that way, someone who can do something about it WILL read our stories.

      A goood friend of mine with rheumatoid arthritis and Sjogren’s syndrome will get much relieve from prednisone in short doses. Due to it’s affect on my mood, it’s not something I can try, but your story with the dexamethasone suggests that perhaps low-dose steroids can be of assistance. I’ve been hit with major drugs like plaequenil, prednisone, sulfa drugs, and methotrexate for my Sjogren’s, and in most cases the effect on my mood or the effect on my body didn’t warrant continuing. It makes me wonder if milder forms could be found that would be helpful… Sometimes you don’t need to hit the body with a 2×4!

      Thanks for sharing and adding to the voices to be heard, Shelly. <3 I'm going to copy this to your email as the WordPress blog system rather sucks in that it doesn't send notifications if you forget to tick a tiny little box saying "Notify me of follow up comments by email". It's supposed to obey a U.S. spam law, but I find most chronically ill people forget to tick the box (including me), and then readers think I never responded... I must find a better system.

      Many blessings <3
      Jane

  9. arpan
    | Reply

    Just wanted to share this after i stumbled over your website… I am suffering for the past 4 long years like yours with added low grade fever. But the funny thing is every tests are normal. I have stumbled u8pon innumerable no of doctors including countless rheumatology, infection disease, medicines doctor. All just prescribe me either some vitamins/steroids for pain, paracetamol for fever and some anti depression medicines. I told them the pain is quite real and u cant fake fever everyday. I was a healthy individual till 24 years of age and then this struck from the blue. I cant even do normal office work but that doesn’t concern them as my all tests come negative. I am just fed up with myself and on all the doctors. I mean how can u tell a chronic sufferer that you look quite normal so you don’t suffer:(:(

    • Jane Waterman
      | Reply

      Hi there – thanks so much for writing.

      I so understand what you’re going through, and that’s the one blessing about this – is you are not alone – so many are going through this and receiving no help from medical practitioners (apart from the depression diagnosis – well, of course you’re depressed – you’ve lost your health at 24 years, and there’s no reason why!). I’m sorry, but please hang in there.

      I don’t know how your symptoms play out, but if you have widespread pain, it’s quite possible you have fibromyalgia, which tends to have no other signs in terms of diagnostics that you’re sick. Have you been tested for all the trigger points? Fibro on its own can make you very weak and in constant pain. Your symptoms are very, very real. I hear you. I likewise got ill at 24, and the only thing they seemed happy to treat at the time was my depression. Later on, even though I had a rheumatologist (who retired) trying to help me, I couldn’t tolerate any of the medications.

      The biggest thing I’ve learned from my journey is that it’s very important that YOU believe yourself. Even if you can’t get a doctor to take you seriously, you need to treat yourself with compassion and do all the things you can do to help yourself – rest, as much good food as you can make, very gentle exercise (just because not moving at all will make your muscles feel even worse) like walking a little each day, or stretching your muscles. If you can at all afford it, I recommend talking to a good naturopath – because they often have ideas you haven’t thought of.

      Just know that you are heard, and I wish you peace and healing. *gentle hugs*

      Blessings,
      Jane

    • Heather
      | Reply

      Hi Arpan,

      I just wanted to second what Jane said, that you are not alone. I have experienced something very similar to what you describe, suffering for years with no answers, and with all sorts of doctors dismissing my illness because my bloodwork was negative. It’s so cliche, but hang in there, and keep standing up for yourself even though it’s so hard sometimes. Hopefully it’s some small help to know there are others out there who do understand what you’re going through, and without making you feel you have to constantly prove yourself. We get it.

      A fever does indeed sound suspicious. I mean, it’s basically an inflammatory response. Even without that particular symptom, though, doctors should know better than to dismiss your pain and other symptoms. There’s a whole category of autoimmune diseases that are often seronegative (check out spondylitis.org if you’d like some info or ammunition for your next doctor’s appointment). Plus there are autoinflammatory conditions, and as many of us know, a significant portion of people with autoimmune disorders commonly diagnosed with blood tests are seronegative. Why so many doctors insist otherwise remains a mystery.

      But keep trying! I know it’s awful. I’ve been there, and though I was finally diagnosed about 6 months ago, I am still struggling through it day to day. Sharing with people who understand can help a little.

      Heather

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