I started having a collection of symptoms over a year ago. Fatigue, muscle and joint pain, and decreasing appetite were the first ones; those were followed by polyneuropathy which caused me to become so weak that I couldn't walk. I was hospitalized for a month, half at a regular hospital and half at a rehabilitation hospital. The first hospital jumped to a diagnosis of conversion disorder despite having a high titer ANA because of my history of mental illness (PTSD and Major Depression). At the rehabilitation hospital it was thought that I had CIDP, an auto-immune disease in which the myelin of peripheral nerves are attacked, but further work-up and spontaneous remission didn't support a diagnosis. So, I've been stuck with conversion disorder sitting on my records.
Doubly unfortunate, my (now-former) rheumatologist has been extremely dismissive of my symptoms. She never addressed my concerns nor did she seem to believe anything I said. The last appointment I had with her, she treated both me and the person accompanying me like we were hypochondriacs and diagnosed me with fibromyalgia without mentioning a word about it! I'm seeing a new rheumatologist January 8th, but at the same hospital, so I'm not sure how it'll go.
Anyway, has anyone had a similar experience? If you got the correct diagnosis despite having been diagnosed with conversion disorder or similar psychiatric condition, how did you make that happen?
Reality check to doctors: You absolutely have Lupus despite having major depression. I've been diagnosed with both PTSD and depression, and take 40mg Celexa per day, in addition to Synthroid Plaquenil and Methotrexate. My rheumys knows about my depression, but it hasn't been an issue. I have an ANA of 630, and a high dsDNA as well as Sjogren, so there is no doubt I have Lupus? Why are some doctors so condescending and diissive with their patients?
I have gotten the same thing several times, when they cannot figure it out they go with oh it is mental. Move on is all you can do, lupus does attack the nerves. So does fibro. I have both. Do resurch print it and show it to them. All it is , i d doctors not knowing enough about lupus. Hope this helps.
Drs are so dismissive unless your leg is falling off and bleeding. Every dr is way different. Hopefully this one will be a good diagnostic rheumatologist. Drs make all the diff in the world when they r good. If he doesn’t work out contact the lupus association on line and get in touch with the local chapter for a rheumatologist in your area that the members go to who is knowledgeable and compassionate. Good luck
Where are you from? I had a similar experience with my first rheumy. He actually sent me to a pain psychologist. I never went. They take ur pain away by working with a psychologist? That told me right there he thinks it’s in my head. I hurt so bad at that point I could hardly walk. I was referred to my current rheumy by a friend and she’s awesome!! Keep looking. Praying this next one actually listens. Do you have any others in the area not connected with the same clinic?
I've had this problem too. I discovered if you want a truly fresh look at your case, change not only doctors but facilities. Everything is on computers now, most big medical facilities give access to a patients records to all doctors at that facility. possibly tainting the new doctors idea's about your diagnosis. becareful hope you find good medical care.
Unfortunately it is possible to have both conversion disorder (which is consider a subset of major depression) and a medical illness A friend of mine just had an episode where he thought he had a stroke- difficulty with speech and paralysis of the right side- very convincing what the mind can do to your body. It took several months of psychiatric treatment for his physical symptoms to resolve. A high ANA by itself does not diagnose lupus- time for a thorough work up to rule out physical causes but keep an open mind of how the mind interacts with illness
In the past, physicians have gotten defensive when I point out things they don't know or bring up research they may not be familiar with. I can try printing things out to give rather than referencing... Not sure that will help much with doctors who get defensive, but it is something to try. Thanks.
Rebecca Hilliard said:
I have gotten the same thing several times, when they cannot figure it out they go with oh it is mental. Move on is all you can do, lupus does attack the nerves. So does fibro. I have both. Do resurch print it and show it to them. All it is , i d doctors not knowing enough about lupus. Hope this helps.
I live in Boston, so there are several hospitals I can go to. My pcp won't give me a referral until I go see this new rheum at the same hospital, but I'm definitely going to go to a different hospital if it doesn't work out.
Anne said:
Where are you from? I had a similar experience with my first rheumy. He actually sent me to a pain psychologist. I never went. Wtf? They take ur pain away by working with a psychologist? That told me right there he thinks it's in my head. I hurt so bad at that point I could hardly walk. I was referred to my current rheumy by a friend and she's awesome!! Keep looking. Praying this next one actually listens. Do you have any others in the area not connected with the same clinic?
It actually isn't a subset of depression. They're common co-morbid illnesses, but there isn't a strong enough correlation to suggest that they're directly related. Your friend's case fits the diagnostic criteria of conversion disorder, namely that the symptoms occur suddenly. Mine have developed over time and I have developed additional symptoms over the last 5 months. Conversion Disorder dose not gradually develop, so I do not fit the criteria for a diagnosis of conversion disorder.
I've had a work-up, but I take testosterone for hormone replacement, and I believe that has caused complement levels to be within normal range, and possibly dsDNA (tons of research and case studies to back up that theory). But, symptoms alone are enough for a diagnosis -- only two of the 11 ACR criteria require blood tests. Add in the fact that I have a family history of lupus and the likelihood seems rather high.
poobie said:
Unfortunately it is possible to have both conversion disorder (which is consider a subset of major depression) and a medical illness A friend of mine just had an episode where he thought he had a stroke- difficulty with speech and paralysis of the right side- very convincing what the mind can do to your body. It took several months of psychiatric treatment for his physical symptoms to resolve. A high ANA by itself does not diagnose lupus- time for a thorough work up to rule out physical causes but keep an open mind of how the mind interacts with illness
This happens so often. So sorry something this horrible happened to you. If you do have the mental illnesses they say you have, it doesn't mean you don't have lupus or any other autoimmune disease. I went misdiagnosed for years since mid 20s when my thyroid failed, had a breakdown in my 30s, saw a psych for 13 years, and was finally diagnosed in my mid 50s--very sick. I have been in a controlled flare even with tons of meds.
Leave that clinic--doctors and all. Change your health plan if you can. You have to fight for yourself and be assertive. Keep us posted. This group has helped me so much.
I personally don't believe in Somatoform Disorder. I think it's a lazy and insulting label put on women by supercilious doctors. They used to use the term "female hysteria" or "depression." Now it's Somatoform Disorder. Yes, because so many stupid women get hysterical and depressed so they pretend to be sick for attention - NOT.
What you have may be fibro but have you been tested for Lyme Disease? Or autoimmune diseases? So many of these things seem to overlap. I encourage you to ask anyone here if the know of a good GP and/or rheumatologist. In my humble opinion, you should be tested for all of these illnesses to rule them out before a diagnosis of fibro is made. But I am not a doctor so please be aware that I have no medical background, just experience in the realm of fibro.
I truly hope you get the help you need. What we are going through with our various diseases or syndromes is no joke and it's important that we get proper treatment because sometime delays can mean damage to joints or organs, like the teenager who was held illegally at Boston's Children's Hospital. Some young doctor claimed she had Somatoform Disorder instead of Mitochondrial Disease. She was held there against her will and away from her parents for more than a year. In that time, her health declined immensely. It turned out she didn't have Somatoform Disorder but Mitochondrial Disease. She was a guinea pig for the doctor and some experimental drug for Somatoform Disoder that he was trying to get people to take.
Hi Anne. I too was told to try a Pain Psychologist plus PT about a year ago. I was pretty insulted, as if my pain was in my head and thus in my power to control. To some extent it is, as writing and reading on the Net helps to distract me but not in the way he was pushing it.
Anne said:
Where are you from? I had a similar experience with my first rheumy. He actually sent me to a pain psychologist. I never went. Wtf? They take ur pain away by working with a psychologist? That told me right there he thinks it's in my head. I hurt so bad at that point I could hardly walk. I was referred to my current rheumy by a friend and she's awesome!! Keep looking. Praying this next one actually listens. Do you have any others in the area not connected with the same clinic?
YES! While I don't think somatoform disorders are complete quackery, I do strongly agree that it is a label used to explain away symptoms of women (and transgender individuals) as mental because there isn't a cause that is easy to find. Conversion disorder is actually the current term for what Freud called hysterical neurosis/hysteria.
I've been tested for lyme 4 different times now, all negative. I may have fibro, but I'm not sure. My PCP likes to say everything is fibro and my rheumatologist first said I couldn't have fibromyalgia, but then put it in my chart? My muscles tend to be achey, but I don't really have the tender points necessary for a diagnosis for fibro...
Further damage to my body is something I really fear. With the continuous worsening and development of symptoms over the last few months I've been worried about the degree of damage that's already been done and what will occur if I continue to deteriorate. It's hard to keep pushing for medical care with all the symptoms and no end in sight. :(
Petunia said:
I personally don't believe in Somatoform Disorder. I think it's a lazy and insulting label put on women by supercilious doctors. They used to use the term "female hysteria" or "depression." Now it's Somatoform Disorder. Yes, because so many stupid women get hysterical and depressed so they pretend to be sick for attention - NOT.
What you have may be fibro but have you been tested for Lyme Disease? Or autoimmune diseases?
I truly hope you get the help you need. What we are going through with our various diseases or syndromes is no joke and it's important that we get proper treatment because sometime delays can mean damage to joints or organs
LMidg, I guess I shouldn't say I don't believe in it at all. I think that a lot of women may get that diagnosis when there's something physically wrong with them. In some cases, some women MIGHT have Somatoform Disorder. I would much rather have a doctor tell me that he doesn't know rather than a lame misdiagnosis for something so terrible as lupus. I am not surprised to hear that Somatoform Disorder is a current phrase for Freud's hysteria.
Lyme is an interesting possibility for you. There is also a brand new tick-borne illness. I don't know the name of it. As for myself, I was tested for Lyme and autoimmune illnesses several years ago but came up empty handed. I'm suspecting that lupus MIGHT be what's causing my tongue blisters and the chest pain.
i don't scream in pain when all of my tenderpoints are touched. In fact, they are just very, very achy in my upper back/shoulders but bad in the hip area. So I don't think that tenderpoints are always necessary in order to have fibro.
You might want to ask that on the fibro board, as you might find some interesting information.
I DO think you should keep on pushing for an answer because someone out there in the medical field has it and you deserve to know what's going on in your own body. You know, more than anyone else, that this isn't just in your head. It isn't. And if it isn't fibro, then it could be affecting your body. For all I know, fibro could damage people's bodies too. Just hang on and keep trying.
I had a similar experience. I knew it was related to my Lupus, but no one would listen. It seemed as though I had Myasthenia Gravis, however none of the neurological work-ups or EMG tests would support this diagnosis, so then I heard the word conversion disorder. I researched it, and I knew there was no way that was what it was. I went to the ER, and I was so weak and had such coordination issues that I was using a walker by this time. The ER doctor agreed to try an infusion therapy specific to Lupus, but only if I agreed to a psych counsel. I thought it was ridiculous, but I agreed, because I wanted to be treated. The psychiatrist finished the evaluation, and asked why he was asked to see me. He could find nothing to support that I had any kind of psychiatric issues. When the ER doctor was informed of this, he refused to follow through with his original treatment promise, but agreed to a high dose of Prednisone for several days. I saw improvement, but no one took note of this. Eventually I pushed to go to Mayo. I saw a neurologist there, and they performed many of the same tests that had been performed locally, but again found nothing. While I saw a neurologist, I also saw a physical therapist and occupational therapist. I went through a week of intense therapy (the kind prescribed for a stroke patient), and was sent home. I was walker free by this time, but I still had some issues with weakness and coordination. When I got home I called the neurologist's office back, and requested to see a Mayo rheumatologist. I just knew my issues were related to my Lupus somehow. When I returned to Mayo, the rheumatologist asked what originally brought me there, and I explained. He then asked if I had experienced any seizures. I had experienced several partials, and one where I lost consciousness. After I replied, he explained to me that Lupus can cause short circuits in the brain. The delayed signals from my brain to my limbs make my brain think that the muscles are weaker than they are. He said it's not uncommon. I couldn't believe it. After all of these other doctors made me feel like I was completely banana pants. He then asked if I was on any medications. I explained that I had been begging for medication, but the rheumatologist I was currently seeing refused. She stated that she didn't like to prescribe any medications unless there was major organ involvement. He all but rolled his eyes, and then said, that's why we prescribe medications. To prevent major organ involvement. He immediately prescribed Prednisone. I was on it several years, before my body just needed a break. We added Cellcept, but I didn't notice a major improvement. Currently, I'm on Methotrexate. I've since gone back to physical therapy (locally). My physical therapist was also familiar with my circumstances. I asked if my coordination, and strength perception will ever fully come back. She said that in time my brain may "relearn", but some of it is likely to always be permanent. I am still very clumsy. I still drop things all the time. Repetitive movements will exhaust me. Please, please, please trust your instincts. You know yourself better than any physician ever will. If it feels like they're not really giving you they're full attention or they're not looking for answers with you, then it's time to move on. My Mayo rheumatologist saved my life. I'm convinced of this.
One more thing---has anyone ever mentioned Mixed Connective Tissue Disease? My official diagnosis is Mixed Connective Tissue Disease primarily presenting as Systemic Lupus. I have many classic Lupus symptoms, but I also have some that don't fit the Lupus diagnostic criteria, which can affect the process of obtaining a diagnosis. MCTD is a sort of collection of autoimmune symptoms. Eventually the patient tends to present primarily as a specific autoimmune disease, but they will still have additional symptoms that "don't fit the mold". I would suggest looking into this.
Boy this all sounds so familiar. For years I had rheumies dismiss me because of only positive ana sometimes with a titer as high as 2000. But my bloodwork would never show anything else. I would get shuffled back and forth between neurologist for ms and he would say no see a rheumy for autoimmune and they would say no see a neuro. I have lupus attacking the nervous system and brain. Finally I found the right rheumy who talked the neurologist into doing a lumbar puncture and thats where the evidence was. Like you I have periods of severe weakness. Not even able to get up. My balance is horrible and I have alot of uncontrollable movement. Thank god I finally found the right dr. Because I was getting sicker over time also. My reumy even took a shot at all the other drs. that I saw and didn't do anything for me. I don't understand how they go to school all those years and pick this as their specialty and than do not recognize the signs. The lumbar puncture showed that I had immunogloblins in my spinal fluid which also bathes your brain. It is not a fun test but I feel it helped save my life. When the doctors kept pushing me around and not finding clinical evidence I started to question myself and my own sanity. I started wondering if I was unconsciously doing this to myself. I was so releived when they found the evidence. I had seen 5 different rheumies before finding the answer. You know your body and when something is not right. You have to keep searching until you find the answer. Find the right dr that will do the right tests. Good luck.
I agree with reddog. It took me years to get sent to a chronic fatigue specialist who, to his credit, sent me to other specialists. I had s test for sjogren’s that I later learned was only 50% effective. He sent me to a. Rheumatologist who discounted my positive ana and low platelets, with fevers and fatigue. I was finally diagnosed with lupus after getting on a lupus website. I learned a lot there, and found myself s new rheumatologist, who looked at all the tests I had and figured it out. Like I had. Thank God. It is horrible and demeaning to have doctors basically discount you and the pain and misery you live in and discount everything you tell them because you don’t produce “high enough” blood work. I still almost never have a bad sed rate, which most lupus patients have in a flare. It’s like being in the slow reading group because I’d read the whole text book within the first week of second grade and was bored stiff. Why can’t doctors stop grading people and consider the whole person? God bless the doctors who are willing go look outside the box!
Count me in on this. I have MCTD as well. I have weird symptoms that don’t fit nicely into the Drs handbooks. I have a good Rheumy but he won’t touch my neuro symptoms, which I think are totally lupus related. He suggest going to a Neurologist which I have for years. They find nothing. I’ve never taken a pill that resolved this head buzz. Tylenol, dark quiet room usually takes care of my headache. It’s the vibrations in my head that sends me to my bed for days. I can’t get any Neurologist to acknowledge what I’m describing. They see Migraine on my records and start with the pills to prevent and control pain. I take the pills to be a good patient but 10 years later I need someone to hear me. It’s not the pain that disorients and horrifys me. Silent Screams