I think you can all relate to that title. The Derm who diagnosed me got me into the Rheum he refers to. I went to see him. The exam was cursory at best. I came prepared with drug lists, symptom lists, time lines, photos, test results, etc... I've been working with Doctors for the last 22 years. I know hw to be around them. He looks at my hands and then tests me for muscle wasting. So, this skinny, little man tries to hold down my arm and I almost punch him in the face. He does the same with my leg and he almost gets kicked across the room. He says that I have no muscle wasting and that I am "muscular". Well, I just lost 20lbs of mass. I may look muscular but I showed him a photo and he said, 'Oh my, you DID lose mass". That should have been my first sign. Then he pronounces that: 1) He can tell a lot from looking at the hands and, 2) He is not convinced it is Sjogrens. He says that the SS-B is not reliable and that the SS-A is the key indicator. He send me out for a multitude of tests but won't tell my any more than Myositis. The results take several weeks and I have to contact him to get him to interpret them. So, no follow up, just an email through the patient portal. The email tells me, "All negative. You don't have anything". I gently ask about other symptoms and he completely dismisses me. I'm more than a bit shocked.
I go back to the Derm, who is a customer (BTW, who has made a study of mixed tissue disorders and designed a panel of tests for Quest Labs). I let the Derm know what transpired. I showed him the emails and the results. He was pissed and reamed the Rhuem. It seems that I have something going on after all. None of it can be ignored. As he was looking at the results he mentioned casually, "Well, at least you don't have multiple myeloma." That blows my mind. I didn't even know that was suspect at the time. The Rhuem never mentioned a thing to me. Now I am doubly pissed. That's what killed my mother and this prick sat on the results and took his time.
My Derm insists on taking over the care. He tells me that things may show up negative now and in a few weeks turn out to be positive. Then I show him the pictures of the lesions... Yep... Erythema Annulare Centrifugum. He identifies this right the heck off just by glancing. He tells me that this is an indicator of many things that could be wrong. He wants me back in 8 weeks to do that comprehensive panel. This morning I look up EAC... imagine my surprise when I see possible causes include a raft of A/I disorders INCLUDING... you guessed it in one... SJOGREN'S!!!!!
I have read some of your diagnostic journeys and some of you have been gracious enough to write to me and relate your personal stories. I can clearly see your frustrations. I am coming to the conclusion that my Derm (who also did a residency in Internal Med) is a genius and his standard of care is outstanding. The Rhuem is a dismissive dick who's standard of care has been weighed, measured and found wanting.
This is going to be a multi-year journey to pin this thing down. My Derm wants to monitor me on a regular basis. Several times a year at least.
Thank God for Dr. G.
Dr. S. can go pound sand into his dismissive arse.
AMEN....Most of us have gone through this in one shape or form. It takes a lot of moxie for those of us with autoimmune disease and with Sjogrens to endure. I have been insulted and worse. So for any of us on this site I always tell them to hang in there cause you will get an answer eventually. If you don't always get a diagnosis but do get treatment that helps, please be thankful. Until there is a test that is well known and accurate we will struggle with many docs and their opinionated assessment of the sjogrens blood work.
brizzo, You are so lucky to have your good dermatologist. Also, be thankful you are a man cause unfortunately women are blamed for being hypochondriac and hysterical or crazy. I am wondering if they have checked you for non Hodgkins lymphoma or lupus. Lupus and Sjogrens are kissing cousins and can be very hard to distinguish one from the other. I wish you much luck. Help may come from an unexpected place, an unexpected time and an unexpected physician. Irish
Rheumatologists are nearly useless unless they can make some money off of the patient.
So .. I haven't had one in years.
Go with the intelligent Derm. He sounds like he's on top of things.
I've never been to a good rheumy. I've been to a few nice ones, especially the last one because he actually tried to help me with different meds. I don't know how many I've tried. Since I've had Sjogrens, I've learned to dislike Dr.s and even hate them at times. Their egos are just too much. Smug assholes!
My rheumy was a very pleasant woman, however did not think I had Sjogrens because my Schirmers test was OK, and she thought I was older than the usual age for this. (That was before I knew about some of the early symptoms, which I had had in my 40's but had not recognised them as being connected to Sjogrens).
She wrote to my doctor saying I "looked well". I tore up the letter.
I'm glad you have a good dermatologist, Brizzo, hang on in there. :)
Because of this type of experience, I have not seen a rheumy for a decade. It sounds like Dr. G. Is good to keep on the team you are building.
Sorry you had to go through this experience. A shame that there are so many bad and unethical docs out there. I only go to a rheumy for my plaquenil prescription but I am thinking of asking my primary if I can get it from her. I miss my last rheumy's nurse practitioner. They diagnosed me and were wonderful!!! Dr. Patel in Tallahassee, Fl. We moved away a year ago and I have missed them ever since.
Brizzo my story is a long one and I don't have time to share it. Let's just say were it not for a tenacious and smart PCP and an astute neurologist I might never have been diagnosed.
In deference to docs diagnosing AI's is not easy. Many overlap so parsing out what is going on can be difficult.
Like you, I lost much weight in a very short time. The first doc I mentioned it to said that it was not unusual for someone who had just stopped taking a medication that I had been on for years. I was down to 99 lbs for heaven's sake, this was not normal in any way shape or for form.
I also, as others said, got a lot of it's all in your head or just eat (it's calories in calories out that lead to keeping a normal weight one doctor said). The first specialist, an orthopedist who I saw because I had so many aches and pains, said that I had fibromyalgia and that it was because I was a Type A personality. I felt damned for being me.
Hang in there. As someone said focus less on the diagnosis and more on the treatment. Once you find something that works it won't matter so much what label disease has.
I?ve had 4 dismissive Rheumatologists over the years. Since I decided Plaquenel wasn?t doing me any good, I haven?t been to one in the past 6 or 7 years.
I am also sorry you have to go through all this.
I still see my rheumy, but I am getting to where it feels like he is more concerned about my pain level than anything else. Now that may seem like a good thing and it is, but last time he pushed up the Gabapentin when most of my pain at that point was from tendons in the hand where I had broke my wrist earlier. He said, just keep taking the meds you are on, and did have me scheduled to come back in 3 months instead of 6 which was a good thing. All the Gabapentin is causing me to gain weight, because it's always after I take it that I want to eat.
I have tried to wait until right before going to bed to take one, but when he insists on me taking 3 or 4 a day then that doesn't work. I still have no energy.
I am looking forward to the 30th of this month to go for my first appointment to a new Dermatologist PA who has lots of experience with outstanding credentials.
After hearing about your experience with your Dermatologist I am hopeful to get more help here too. The one good thing I can say is my rheumy does always want any other doctors etc. to send him a copy of their findings etc. I wouldn't quit going to mine without a reason more than the Gabapentin, but next time I see him I will express to him about the weight gain from that medication. Before I had taken this last up on the dose, I had lost 20 pounds without that much trouble.
I always look forward to your posts.
susanep
Quote from: irish on December 18, 2019, 02:59:11 PM
AMEN....Most of us have gone through this in one shape or form. It takes a lot of moxie for those of us with autoimmune disease and with Sjogrens to endure. I have been insulted and worse. So for any of us on this site I always tell them to hang in there cause you will get an answer eventually. If you don't always get a diagnosis but do get treatment that helps, please be thankful. Until there is a test that is well known and accurate we will struggle with many docs and their opinionated assessment of the sjogrens blood work.
brizzo, You are so lucky to have your good dermatologist. Also, be thankful you are a man cause unfortunately women are blamed for being hypochondriac and hysterical or crazy. I am wondering if they have checked you for non Hodgkins lymphoma or lupus. Lupus and Sjogrens are kissing cousins and can be very hard to distinguish one from the other. I wish you much luck. Help may come from an unexpected place, an unexpected time and an unexpected physician. Irish
Oh, they checked me for quite a few things but the Derm was adamant about how "fluid" it all is. That it can change within a few weeks. He wants me monitored multiple times a year. I believe that he is afraid it is smoldering, sub-clinical multiple myeloma. I'm taking a wait and see attitude.
As for Rheums in general... If you would all pardon my "French"... expletive RHEUMS.
Brizzo, It is too bad that you don't say what your mean. Yuk Yuk!!! :D
I, too enjoy your posts cause you always have a lot of info to give us. Your deem is a doc that understands what an autoimmune or other weird illness can do. Doctors just seem to hate it when we tell them that a family member had Sjogrens. I think my mom had it but it was 1984 when she died and little if any testing was done/or docs had no clue.
Hope that you will come up with some blood work that will show something soon. With that being said, have a great Christmas. Irish
My first Rheum, 2002, foreign born, Yale medical school, a woman, was AMAZING. She 'diagnosed' Sjogren's based on symptoms, prescribed Evoxac and Restasis.
Met some horrible Rheumatologists in the almost 18 years since my first. I met a Rheum at a Medical Center who hadn't "heard" of Sjogren's!
However, in 2011, it was a Rheum at Duke Medical Center, again a woman, who diagnosed my Immune Deficiency Disease and set me on the path of both a 'unifying diagnosis' that explained everything that I suffered from, AND gave me a path to treatment (IVIG every 4 weeks for the rest of my life) that has been a miracle (but only for constant infections, not my host of other problems).
So, two from 18 years of constant medical problems, I recommend 2 things:
1. Go to a University Medical Center for medical treatment. No matter how far, no matter the cost, it may be the only place you stand a chance of finding proper diagnosis and treatment.
2. If Rheumatologists fail you, see an Immunologist. Your Immune problem may not be AUTOimmune, it may be like mine. My Immunologist, a woman on the faculty of the medical school at Duke University Medical Center, explained that my Immune System uses cytokines, not autoantibodies, to attack my organs/systems. The outcome is the same horror show.
Alas, there is no way to stop my Immune System's rampage, or to treat most of my problems. I watch as my neuropathy spreads and spreads. Fortunately, the worst began when I was already 60.
My heart goes out to those of you who have suffered so much from such an early age. I had my share from birth, but could 'plow through' and live a semblance of a normal life. No longer. I am disabled and live in a Senior Living Center where I will eventually get the assistance I will need.
Go to a Medical Center, and persist until you find a competent doctor. They exist. The best are on the faculty of the medical school, which means they teach, do research and see patients. They are on the cutting edge of medical science.
Also, I recommend women doctors. My husband is scheduled for surgery for colon cancer in January. His surgeon is a woman, on the faculty of the medical school at Duke University Medical Center. She will do robotic laparoscopic surgery, if possible. She graduated from college in 2004, so she is clearly under 40.
Young female doctors, on the faculty of the medical school at a University Medical Center, that is my recommendation based on experience.
Regards, Elaine
I also do not have a good Rheumatologist. But actually I have never had one. There has been many fine men and woman that I have consulted,
but their lack of knowledge about the current trends in Rheumatology is amazing. Only one fine Rheumatologist from a large local university helped me.
Intravenous gamma globulin helps me a lot, but getting this medication is a very high mountain to climb. Currently, the Chairman of Rheumatology point blank refused to give it to me, for no good reason.
But complaining never works. I have had over five Rheumatologists since 2012. All of them quit their jobs.
I am at a loss on what to do next. It's a very bad situation in the Medical World.
My rheumatologist was actually very cooperative and progressive. Diagnosed me on basis of symptoms and had blood work done to back it up.
He allowed me to try out many medications and/or supplements as long as I could back it up with a scientific paper.
He helped me lessen my symptoms :) ; unfortunately he could not cure me, but as far as I'm aware, not many people with Sjogren's are... The syndrome is too complicated!
FIRST: Apologies to the Mods for having to expurgate my expletive. I was a bit angry when I typed that. I love how supportive, nice and gentle this site is.
My Derm has made a multi year study of mixed connective tissues disorders. He designed and developed a panel of blood tests for Quest Labs for a variety of M.C.T.D. that is still used today. It seems that so much of this can be seen on the skin. Then again, many more systemic disease states appear with cutaneous signs than one would imagine.
One of the SF Bay Area's foremost experts on MCTD is a Derm at Stanford, Dr. Fiorentino. My Derm was a Stanford professor along side him.
I've been working with Dermatologists for the last 22 years. Currently, I work for Novartis and I launched the biologic, Cosentyx. For many years I was in, what we call, "Lotions and Potions". My focus was on the relief and resolution of common skin disorders like acne and steroid responsive dermatosis. Two decades ago we were not focused on the entire system... just the skin. Only the most forward thinking Derms looked beyond the surface. One of my old customer's, Dr. Connant was the first person to identify AIDS through the examination of the skin. With the advent of Biologic treatments, we are focusing more and more on metabolic disorders. We are finding that the skin is the window into the body.
The focus of Biologic treatments is psoriasis and psoriatic arthritis. The deeper we look, the more we find out just what goes hand in hand. The plaques on the skin merely indicate that one's immune system is wildly out of whack. The series of metabolic disorders that are "underneath" the plaques are amazing... Diabetes, high blood pressure, heart disease... so many. In fact, a study was just done to see how the treatment of PSO with biologic also affected negative cardiac outcomes. The results staggered me... Statins are the gold standard for reducing negative cardiac outcomes (NCO's). Subjects on a variety of biologic classes were followed (along with statins as a control) to see what the rate of NCO's were. People treated with TNFa's had a lower incidence of NCO's than statins. People treated with IL-12/23's had a higher incidence of NCO's. People treated with IL17a's had double digit lower NCO's!!!! Sometimes if you treat the skin, you treat the entire body.
I know I ranged far afield here but, the pain aside, I am finding all of this fascinating. For the last five years, I have been observing AI disorders from the outside, looking in. Now I am on the inside, looking out. It has made me a better, more useful and more informed Rep. I may be in a ton of pain right now but I am still finding it fascinating.
I have always been interested ion dermatology and enjoyed working on that floor when I was in Nurses training (back in another lifetime)
I started with a dermatopathologist back in the early 2000's and he diagnosed my first autoimmune disease which no one else seemed to deem important. I had been having a skin condition that came every couple of years in the same place on both upper arms and treated with an antibiotic and cortisone cream ...this by my first deem who knew nothing.
When I saw Dr. DP (second deem) I had an arm that was swollen up like a log from shoulder to elbow. It hurt like heck and was red also. Turns out I had a 13 CM bullae on the back of this arm that was draining. I had bacterial and fugal infection and was put on anti B. Anti F. and prednisone tabs. He did a biopsy and it came back positive for Bullous Pemphigoid. I was flabbergasted. I couldn't see the blister on the back of my arm so didn't realize how bad it was.
Anyway, that dermatopathologist knew his diseases both systemic and skin. He told me years later that he always had me pegged for a "lupus" but my blood work always came back negative. Sooo, I get what you have been working with and it must have been interesting. Medicine is interesting.
My autoimmune has been flaring lately(it always flares what am I saying) and I have had a lot of strange skin lesions that have grown and needed to be removed. I was blessed with my first squamous cell lesion on the bridge of my nose and head for a deem surgeon that specializes in Mohs procedure and does lesions that are in difficult places..mine sure is. So, yes, the skin is the biggest organ of the body and sure tells a lot about our health. Thanks for the interesting info you posted. Irish