In short:
you have hip bursitis, here are some exercises
there are 2 more blood panels your 1st rheumatologist didn't draw. we'll get those done today. (dsDNA and anti-ENA)
your rashes are atypical for lupus, you should go to a dermatologist for some biopsies.
your symptoms are too non-specific to diagnose right now. be thankful for that because you don't want lupus.
we don't treat fatigue (with immunosuppresants--she never mentioned plaquenil). also, I can send you for a lip biopsy if you want but we treat sjogrens with what you are already doing for your dry eye and dry mouth. so, a test that invasive isn't really worth it.
see a rheumatologist in another year. me or the doctor which is closer (the first dr.) which ever one you want. although, if you end up with lupus your not going to want to have to drive 2 hours for every appointment so you should go back to the other doctor.
the end.
How are you feeling about this?
Wow! I would be upset with that response😡. Did you ask about Plaquinil? I suppose that would have not changed his mind.
So sorry that you had to experience this denial of your symptoms and illness. Where do you live in the Midwest? Maybe someone close by can recommend a much better physician?
Kathy
I never implied I had lupus (she asked specifically if there is lupus in my family history-I have a cousin with it) and I never asked for any drugs of any kind. I was hoping that maybe there was enough evidencefor a sero-negative diagnosis of (probably) sjogrens. and I have heard plaquenil can help with some of those symptoms.
I'm in Iowa. Right now i'm debating about the dermatologist. I think one lesion is granuloma annulare and she thought the same. the other rash I get looks like it may be nummular dermatitis. (my guess, not hers). I have to think on it because to go and spend the money at another specialist and not get any definitive answers is kind of heart breaking every time..
so, this morning I had my good cry knowing this is not going to get resovled any time soon and then I try to move on to just trying to keep doing what i'm doing until something changes.
I so know what you are going through. I see quite a lot of doctors because of my various autoimmune issues. Within the past 2 years, I've had experiences much like yours, with at least three doctors. I see a hematologist for my antiphospholipid syndrome. I have blood work every 6 months to make sure my numbers are good...and they have been (thank god). The other day she acted like I was bothering her being there. She said " I don't know why I even have to see you" (in a negative tone). I am having problems with my eyes, and being on Plaquenil, I was worried. I asked my rheumatologists nurse if I should stop the Plaquenil until I see my eye doctor, just in case. His nurse said his answer was "you can stop the Plaquenil if you want"...IF I WANT? Thought I was asking for a professional opinion? And finally....saw my eye doctor yesterday. Told him about what I was feeling with my eyes (pain with movement and slight vertigo). He told me it wasnt my eyes, but my inner ear. I know for sure whatever it is...it is definitely with my eyes. I have had so many negative experiences. Not sure if I should start sticking up for myself (if its worth the stress and effort with there demi-gods), or just make an appointment with Johns Hopkins or UPenn and be done with it. What is it with doctors these days?
loriacc,
sorry that you've experienced the same thing, it's so belittling. I have see it too at the GP as well as the hematologist, neurologist, endocrinologist...lol. i'm running in circles and also running out of "-ologists"
it's exhausting and demoralizing to be sent from one to another...only to be asked why you are there.
I understand this is the common fight of those people with chronic illnesses and it a shame. My health has been called "complicated" by several doctors now, but no one seems to be able to help me.
Lisa
Thanks for letting me vent on top of your vent :) In all seriousness though, it is a common fight amongst us. Only those of us who live this can truly understand.
Lisa, I am sorry you got that kind of treatment. It seems like the doctor just blew you off-:(((
When my old rheumy at Mayo clinic retired, the new one did that to me. I didn't go back to him and got another rheumy. It's so frustrating but sometimes you do come across a health care provider who treats you with dignity and respect.
I had a lip biopsy and it wasn't that bad. That is how I was diagnosed. Not everyone has a good experience with a lip biopsy though, I've heard some bad stories. For me, it was well worth it. If you do decide to get one, make sure you go to the doctor first and ask them how big of an incision they make and where. Mine was small and they took two glands out that were very small.
Thank you for listening and for the imput today.
Got lab results and both the anti-ENA and dsDNA (12.3, where anything under 30 is negative) were negative. I'm not at all surprised.
So my big question now is do I go to a dermatologist for those skin biopsies (forearm and back of elbow)
Oh Lisa, I'm sorry. Hang in there, I've learned you have to kiss a lot of frog docs before finding the right ones. Sometimes too other symptoms need to pop up before one can be diagnosed.
side note: the online notes from the appointment list the dx as ANA positive. Bilateral trochanteric bursitis and myofascial pain.
The myofascial pain threw me off but now I remember she said she thought my chest/rib/shoulder/neck pain was caused by something but I couldn't remember the word! Lol
Wow. So sorry you have not had good experiences in this journey. There is a lot of doctors that do not want to spend the time figuring things out for us. Today I went to a Chinese Acupuncturist and Herbalist. I need something to make me start feeling a little better because my doctors are always on a wait and see and by the time I wait something worse happens. It is annoying but just know we are all here. We are all fighting. We just can't give up. You are more than what you think and some doctor out there will take you at your word and will want to dig in and help find you solutions.
Angel dancer
Check the yellow pages for dermatologists and then call and talk to the receptionist or the nurse. Find out how many years they have been practicing and if the dermatologist deals with many autoimmune diseases. You ask the questions you feel you need to and then can make a choice on which doc you want. Make the appt. for the rashes and when seen ask if they can be biopsied to identify if there is inflammation involved. The doc may indicate this action before you even think of it.
I had my first autoimmune disease diagnosed by a dermatopathologist back in 2002. I was in misery with a 13 cm plaque on the back of my arm. It was really bad and no doc knew what to do. Finally got into the derm doc and he biopsied and did cultures and biopsies. I had a bacterial and fungus infection and biopsy came back Bullous Pemphigoid. I was put on prednisone short term and antibiotic and fungus cream. Took me another year for diagnosis of Sjogrens and 3 more years for diagnosis of Myasthenia gravis, hashimotos and severely low t-cells related to autoimmune disease. Then this past year I was diagnosed with autoimmune ear disease.
I started with health issues that progressed over the years---1964 and first diagnosis in 2002. I almost wore me, hubby and my care out with doctor appointments and it was bloody miserable trying to get diagnosed. I also made almost uncountable dentist appt. and infections, root canals, tooth extractions with resulting extraction of rest of teeth and dentures over a period of about 15 years.
Just to let you know that autoimmune diseases are hard to nail down. The biggest problem is we don't look sick and the issues we suffer with don't always show up. I never wore makeup or lipstick to the dr cause I didn't want to look healthy!!!
I would take time off at times just because I was just sick of going to the doctor and needed the rest. Then there is the fact that I had to keep working and that made life exhausting. All I can say is to just hang in there and keep on asking for a referral when you think you need to. The best thing I did was go to the University cause I got more attention and eventually things started to move faster. I did not get diagnosed at University but sort of indirectly. I finally have a bunch of great doctors. I have 7 specialists but don't see them all routinely. Some are once a year. Keep a list of your health issues and keep your head held high. Irish
Thank you Irish and angel dancer. :-)
In 2013 my pcp suspected Sjogren's because of my dry mouth. My tests came back negative & he told me "Good news, you don't have Sjogren's".
When my symptoms worsened, I thought I got lucky when I was able to get an appt. with the head of our local Sjogren's Clinic. She wanted a lip biopsy but couldn't recommend anyone except for one Dr. but giggled & said "he's old", so I didn't do it. When my tests all came back negative, she told me I had some autoimmune thing going on, gave me a script for spit med, & told me to come back in a year...
My symptoms quickly worsened & I tried several other rheumys. They don't really know what to do with Sjogren's.
I've pretty much given up on rheumatologists & I am working with my new pcp to deal with my most recent issue of a failing thyroid. So frustrating to have this disease that no one takes seriously.
Good luck to you. I hope you find a very good, caring doctor soon.
Lisa ..... I am so sorry that you have had such bad experiences with the Rheumatologists. They don't sound like they are interested at all in finding out what is going on with you and treating you.
If it was me I would get a lip biopsy. 40% of people with Sjogren's have negative blood work. The lip biopsy is the gold standard for diagnosis.
I think I gave you the name of an excellent ENT doctor, Dr. Holly Boyer at the University of Minnesota, who does hundreds of lip biopsies a year. She is very good and won't screw up your lip or the biopsy. It is important to have an experienced ENT or oral surgeon do the biopsy so that the incision is tiny, there is no nerve damage, and the correct number of salivary glands are removed for exam. It is also important that the pathologist is experienced so that the specimen is interpreted correctly.
I had a lip biopsy in 2013. A very tiny incision was made and a few small salivary glands were removed. I had 2 dissolving sutures placed. The lip was a tiny bit sore for a day or two. Everything healed up nicely and I have no residual.
If I were you, I would keep looking for a competent Rheumatologist. In the meantime, I would get the lip biopsy done. If you need a referral to get it done, your PCP can do the referral.
I hope things go better for you in the future.
Dermatology appointment made. August 10th. I know the one skin lesion will be there... I've had it a year! We'll see if I have any on my arms...they come and go.
thank you Jasper. yes, I remember you recommending Dr Boyer.
Lisa,
There is a SS support group in Iowa. I would call the leader and ask if she knows any good Sjogren's docs in your area. I facilitate a group in my area. Our group has created both a list for docs & dentists who are familiar with SS.
The leader is: Paula
Her email: sjgdbq@gmail.com
Telephone: (563) 542-5308
Hope that helps!
SjoDry
I've exchanged emails with her already. A while back.
Thank you.
I was diagnosed with pSjS by lip biopsy and positive ANA, having previously been misdiagnosed and treated for RA. My lip biopsy was conducted by a young dentist who had never done it before - on a very hot day last year in a dental theatre with no air con and no water available for me to drink before or after. An oral consultant (not mine) watched over her and pointed out a particularly "juicy one". She removed five in total. I made a full recovery in record time, although my lips and gums were permenantly tingling well before this procedure. It was 100% positive for Sjögren's.
It took three rheumies before I got the right diagnosis and I'm now on my fourth because rheumy no.3 rediagnosed me and then retired. If a doctor can't be a good detective for you then move on and don't look back is my advice. And I'm in Scotland where rheumies are in very scarce supply!
thank you,
I am honestly at a loss about what to do right now. This particular doctor, as I understand it, still would not a lip biopsy confirmed case Sjogrens with and plaquenil type meds.
when I messaged her about how to manage the myofascial pain she recommended exercise and 1 Tylenol 3 times a day. She already knows I am taking 2 Tylenol/3 ibuprofen one to two times a day to try to manage the pain when its flaring. (and ibuprofen is a no-no for roux-en-y weight loss patients for its effects on the GI system.) So I can only imaging she thinks I am a drug seeker as well as a hypochondriac who is hoping she has lupus. I am neither.
dear god.
Many physicians are abrupt these days, which I believe is due to their heavy workload and rapidly decreasing take home pay (thanks Medicare).
Fewer people are now attracted to training as a physician, because of these hardships. In my town, there is a shortage of physicians in every specialty.
But there is no excuse for acting like this.
I encourage patients to complain to the local Medical Society, and State Medical Board. Another way is to post on Yelp.
I have partially solved similar problems by only going to a University Center. They have Professors in charge, who you can complain to.
I have been attended to by 8 different Rheumatologists in my State in 25 years, and except for two University Rheumatologists, they were all grouchy.
The first 8 did not make the proper diagnosis.
One French Rheumatologist threw me out of his practice for no other reason except that I was a complicated case. What a rascal!
vrystaat,
I do have a University hospital in my state...perhaps that will be my next try. When I'm feeling hopeful that another appointment might be productive...or when my recommended recheck in a year rolls around.
Don't wait another year Lisa. You need to try to slow progression and regain quality of life.
Finding the right rheumy is very hard! Best to go according to recommendations.
Keep trying and don't give up!
Quote from: lorigacc on May 31, 2017, 11:40:42 AM
Thanks for letting me vent on top of your vent :) In all seriousness though, it is a common fight amongst us. Only those of us who live this can truly understand.
But actually though! I don't understand why its so hard to get diagnosed, and then once diagnosed actually being treated!! Like if i go to the doctors and see a specialist that went to school for 10 years or so specifically studying autoimmune diseases I expect them to be able to diagnose and treat my disorder. If I go to a cardiologist and they find I have a rare heart defect, they treat the heart defect not say oh well if it gets worse let me know and then we can maybe do something? Or say, well you claim to be having low blood pressure, but its hard to say if thats actually from the heart defect as it could be from a number of reasons so we are just going to ignore it. What kind of a system is this?!?! I feel like i get more out of this forum and journals online than any doctor I've seen....More people with Sjogrens need to become doctors.
So sorry to hear so many stories of doctors ignoring obvious symptoms because test results are negative, despite hard data showing that SS is seronegative in around 1/3 of cases! I went through quite a few different specialists before finding a rheumatologist willing to treat me. My first rheumatologist basically told me it was all in my head, and not to bother her again. I was fortunate to finally find an experienced rheumatologist at a private practice who was willing to prescribe Plaquenil despite my negative blood tests.
Many clinics these days, especially HMOs, are trying to squeeze as much money as they can out of the day, which means overbooked and shorter sessions. Many doctors have become extremely test-dependent as well, as it relieves them from the need to do a lot of time-intensive investigation. I've even visited a large, world-renowned medical system only to be told, basically, that it was all in my head. It's maddening that finding a doctor who will really listen with the goal of improving patients' quality of life is like finding a needle in a haystack.
One trick I have found useful is to keep conversations on a very analytical, unemotional level. As soon as one starts to show anxiety, some doctors seem to assume that you are a hypochondriac and write off your symptoms as self-created. It's as if they don't realize that suddenly having unexplained, life-altering symptoms is enough to make anyone anxious.
At the end of the day, treatments for eye and mouth dryness can be prescribed by other specialists, so a diagnosis often won't significantly change a treatment regimen. My most helpful treatments have all been alternative therapies I have obtained on my own, but it definitely feels good to have a medical professional that is looking out for you.
Quote from: ghostkiwi on June 10, 2017, 03:52:25 AM
But actually though! I don't understand why its so hard to get diagnosed, and then once diagnosed actually being treated!!
[/quote]
There are more than 100 Autoimmune Diseases https://www.aarda.org/diseaselist/
In medical school Sjogrens I understand receives a brief nod. And Drs. are taught to use set criteria. Given the overall prevalence as compare to other AI that would seem to make sense. "A study from Olmsted County, Minn., estimated the incidence of physician-diagnosed primary Sjögren syndrome to be about four cases per 100,000 persons"
It would be more likely a Dr. with more interest in the Lupus/Sjogren area would be more up-to-date on research. Other Drs. not so much, as they do not see the need arise for their patient population/practice. At dedicated Sjogrens Clinics where this disease is the norm ... clearly a different view.
Medical Oath, Of the Epidemics says:
"The physician must be able to tell the antecedents, know the present, and foretell the future — must mediate these things, and have two special objects in view with regard to disease, namely, to do good or to do no harm."
So here is the question.. if a Dr. gives a Dx and treats, yet misses another Disease which would require a different treatment protocol; What has been gained? Has damage been done? This is also the question I ask myself with so many meds to mask pain.. ??
Lisa, I am thinking perhaps going to an immunologist would help circumvent the ping-bong of collecting "ologists"
Here is a large study of 3069 consecutive patients with diagnosed chronic autoimmune thyroiditis (AT)
The association of other autoimmune diseases in patients with autoimmune thyroiditis: Review of the literature and report of a large series of patients
http://www.sciencedirect.com/science/article/pii/S156899721630204X
It is frustrating and overwhelming very often on this journey, even for those us who have positive labs. Nothing is 'one size fits all' and there is the frequent probability of the addon disease states, flares, etc.
Family history: "Lupus sometimes seems to run in families, which suggests the disease may be hereditary. Having the genes isn't the whole story, though. The environment, sunlight, stress, and certain medicines may trigger symptoms in some people." https://www.niams.nih.gov/health_info/lupus/living_with_lupus.asp
It is wise to have a group of ologists who can sort out all the issues we have. I get sick of seeing so many doctors but have to admit that what one doc may miss another doc will pick up on. This is just the way it is. Doctors are able to diagnose based on education and experience and that is why more than one doctor is to our advantage. My neurologist is awesome when it comes to picking up on other issues and getting them treated and thankfully my internist doesn't get upset at all.
I have learned that when I have some health issue that my internist doesn't seem to be able to fix I will ask her for a referral to another specialist and it usually pays off. We just have to sort out who is doing us the most good. The one I got rid of was the rheumatologist and I have never missed her. Turns out she was a thorn in my side as she had only certain things she tested and she never went outside of these perimeters. It just takes years to find the right combination of doctors. Good luck. Irish