DIAGNOSIS... OR LACK THERE OF

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Mandolyn
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/26/2007 2:10 PM (GMT -7)   
I am quite bothered by the rheumatologist because she refuses to diagnose me with SLE Lupus. She has charted it as "mixed connective tissue disease." First off, I want to start out by stating that I am a nurse and I am starting my MSN (Masters of Nursing) in the Fall. I know all there is to know about lupus because I have done the bloody research and have talked to many lupus patients and many other doctors. I have done everything but print out the list of the 14 symptoms, highlight all 12 of my symptoms and list all of my other symptoms, and take it to her and say "look here. I have 12 out of the 14 and then some more when you only have to have 4" (this is from the Lupus Foundation and if you have 4 of these then it is lupus... www.lupus.org if you'd like to see the list). It frustrates me because all of my symptoms have been going on for years. You know the saying "if it looks like a duck, walks like a duck and sounds like a duck, then it's probably a duck"? That's how I feel right now; every possible sign is pointing to lupus, including my blood work, and no one will call it lupus. The only reason I truly care what they 'call' it is because I would like to participate in a clinical trial for lupus but you have to have a medical diagnosis of lupus. I can't be part of the trial without the diagnosis of SLE Lupus.

Has anyone else had trouble getting diagnosed with Lupus? If so, please reply and give me some advice on how to deal with this. I go back to the doctor on July 1st.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/26/2007 2:18 PM (GMT -7)   
All I can recommend is to see another rheumy, maybe one who is more familiar w/lupus, in hopes that they will dx you. Maybe start by finding a local lupus group (via lupus.org) & see who the members use as a doctor.

Also, have you asked her directly what she feels is symptomatic of MCTD rather than Lupus and let her know that you'd prefer the Lupus dx? Sometimes drs think they are helping us by giving us a less precise dx -- can't figure if thats 'cause they think they are helping w/insurance issues or if they are afraid of trying to treat lupus or what, but that does seem to be a trend w/some drs.

Good luck,

Post Edited (Lynnwood) : 6/27/2007 8:50:46 AM (GMT-6)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/26/2007 2:57 PM (GMT -7)   
Mandolyn,

First of all, I'd like to welcome you to our forum. And secondly, I want you to know that for many many years I experienced the same frustrations you're having. My mother had lupus and I knew I had lupus. The reason I wanted a dx was because according to everything I had read, early diagnosis means early treatment, which means that perhaps the disease won't have time to progress as it would if it were left untreated. I also wanted to feel better.

I have often wondered why doctors are hesitant to make a dx and I do have my suspicions. Once lupus is on your chart, it will be there forever, and can potentially cause lots of problems in the future when it comes to getting or changing insurance plans. I'm married to an attorney who works with a lot of physicians and I know that doctors are more scared than ever of litigious patients, and lupus is something that is so difficult to diagnose that many doctors go overboard in being cautious about giving a patient a dx. They don't want to make a mistake. However, those are just my hunches.

But that doesn't help you. I think the advice Linwood gave you is excellent. I was seeing a rheumy (my second one) for a few years and felt like he just didn't listen to me at all. I felt horrible, had over four of the criteria, and he prescribed flexeril because he said I had a sleep disorder. When I finally changed doctors, I received a dx within months. Since then I've been on several different meds and finally am coming back to life. I had the same experience with doctors 20 years ago when I had thyroid cancer. It's a good thing it was slow growing and had not metastasized because it took appointments with several doctors before someone listened to me and worked to find out what was wrong.

It is for these reasons that I try, whenever I can, to go to women doctors. Although they aren't always, I find that they do tend to be better listeners, more compassionate, more approachable, and have experienced the same kind of dismissive attitudes we lay people.

I wish you the best of luck in your search for someone willing to explore answers with you. And come back. I think you'll find that this forum is full of wonderful folks who truly care about each other.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


AnnieRae
Regular Member


Date Joined Nov 2006
Total Posts : 76
   Posted 6/26/2007 6:36 PM (GMT -7)   
:-)  Hi Mandolyn and Welcome, I'm sorry you cannot get a specific diagnosis.  I think Lynnwood is soooo right.  My doctor went around everything he could and wasn't even going to give me a diagnosis until I ask him directly myself. 
 
He told me that on my chart he was going to put down Inflammatory Arthritis for insurance purposes.  I was really very glad he did that because I have read on other forums that it is very hard to get insurance if you are diagnosed with SLE. 
 
But if you google inflammatory arthritis it pretty much says Lupus. I guess it's whatever is written on your medical records that make the difference.
 
I would also consider going to another Rheumy to see if they can give you a specific diagnosis, especially if you want to do the Clinical Trial.  Good luck.   Hope you get your answers.   AnnieRae     :-)  
There Is Always Hope


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 6/26/2007 6:57 PM (GMT -7)   
Hi Mandolyn,
   Welcome to the forum. I can't offer any more advice than what you have already been given. Just wanted to let you know we understand your frustration and hope you get a dx soon. Take care and keep us udpated.
                                                              Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/27/2007 8:34 AM (GMT -7)   
Mandolyn, I also wanted to welcome you. I'm sorry your are having a hard time getting a diagnosis. You are definitely not alone in this - I think what you are going through is a very common thing and most of us have been through it at some time. My old rheumy seemed like she did everything she could not to give me a diagnosis and kept calling my symptoms "lupusy". I got fed up after a while and am now seeing a new rheumy who has been more helpful with a diagnosis and treatment. He says I have lupus but wrote UCTD (undifferentiated connective tissue disease) on my chart for insurance purposes. I'm okay with that as long as I get treatment that will help me feel better.

You got some wonderful advice from others here and I really don't have any other suggestions for you. I'm really glad you joined us and I hope you'll continue to post here.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Mandolyn
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/30/2007 2:30 PM (GMT -7)   
Thank you all for the warm welcome and advice! This rhuemy is my 2nd in 7 months and both have been females. I have asked her directly why she does not believe I have SLE and she only responds "you're tests don't show it and you don't have any of the symptoms" which is false. I have seen my own bloodwork and have researched what the levels are for a SLE dx and normal levels and my levels definitely indicate SLE. Also, I have taken pictures of the rashes, hair loss, video of me taking my temp to show that I get fevers of 102-103 often, etc. I researched a lot on MCTD and found that it is a mix of SLE, Scleroderma, and polymyositis and I am only presenting signs of lupus, not the others. I printed out all of the material that I could find, have highlighted and wrote down all of my questions and concerns with the dx. I will take this information and proof of symptoms to my appt on Monday and hopefully can figure out something from there. Maybe if she sees it put out in a chart form by signs, symptoms, and test results for each she will see that whatever it is that is attacking my body, it isn't MCTD. Thank you so much for your support guys! It really means a lot to know there are others out there that are going through, or have gone through similar situations and understand. I'll keep you guys informed!! Thanks again and have a great weekend!

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/1/2007 9:20 AM (GMT -7)   
Good luck with your appointment tomorrow. I really hope all the work and preparation you do pays off and the doc will really listen to you and take time to talk with you about everything. Let us know how it goes.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



CaptSue
Regular Member


Date Joined Jan 2007
Total Posts : 279
   Posted 7/1/2007 11:21 AM (GMT -7)   
Mandolyn,

I just wanted to welcome you to this place filled with wonderful people. I would think that if you wanted the lupus designation that you (with your symptoms and blood tests) should be able to get it. The way I understand it is that it is our autoimmune systems attacking our bodies and all the docs can do is categorize it by symptoms. They say I have MCTD but they didn't have that name until recently, just a collection of people with symptoms that didn't fall into the three diseases.

Hope all went well at the docs. Sorry you are here and suffering.

Stay Strong,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Paxil (10 mg, replaces Prozac), AmbeingCR (12.5mg)


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 7/2/2007 8:50 AM (GMT -7)   
Hi Mandolyn,

I didn't have anything else to offer besides what has already been said. You have received great advice. I just wanted to stop in and add my welcome to you.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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Mandolyn
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 7/6/2007 12:32 PM (GMT -7)   
I went to the rheumy on Monday. She said she will not dx me with SLE, but changed my dx from MCTD to UCTD once I pointed all the problems with a MCTD dx. She also tested my blood sugar, iron, and creatnine levels in my urine. She called me with the results yesterday and my iron is 10.5, blood sugar was 69 (normal for a woman my age is 80-120), and I have elevated creatnine levels. I have a lot of issues with my spine (Akenosing Spondylitis, DDD, Spondylosis, Anteriolisthesis, and a rare anterior herniation of the T7-T8 disk) and she said that there was nothing that could be done for it. I am going to have to suck up the pain for the rest of my life according to the doctor. She prescribed me Plaquenil, Tramadol, Flexeril, and Meloxicain. It is just really hard knowing that I'm almost 22 and am going to be in pain the rest of my life. I haven't come to terms with all of it yet. Thanks so much for all your advice and help guys! I really appreciate it!

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/6/2007 2:50 PM (GMT -7)   
Hi Mandolyn--
At twenty eight I started losing all my pigment and getting hyperpigmented areas. My liver enzymes were off the charts, my ANA high, my antithyroid antibodies high, my back a mess. I didn't know it till the pigment stuff. They tested me for hep and I had hep c antibodies, they did a RIBA and it was inconclusive. They did not do a pcr. I was treated with interferon, which nearly killed me and my rheumie tells me from the records he got it looks like I never had hep c. My biopsy was completely normal, healthy liver. It's not now. I have weird AI problems but no ds-dna, even though speckled ANA can get high. My TPOS over a thousand, so I have hashis and low adrenals. I'm having bad sun sesitivity, have lost my repro due to pco disease and endometriosis, basically, diabetes, and very very severe fatty liver disease. Everyone on my dads side dies of cirroshis fairly young, no exceptions. I was diagnosied with Sjogrens, but my rheumie won't connect all the rest together (and gi problems and some brain damage and anticardiolipin antibodies and past heart damage) and call it something, even though it all hit at once at the same time. It took me 13 years to see a rheumatologist and the first one was a quack who told me there was nothing at all wrong, just depressed! I do have a problem taking pred, but my immune system is toast. There's a really interesting article about cytokines and anticytokines which might help with your battle http://www.rheuma21st.com/archives/cutting_edge_cyto_therapy_shoenfeld.html
I am in the class of excess alpha-interferon, before alpha interferon treatment, so they really killed me with it. They couldn't have given me anything worse.
Health care these days is ridiculous. The doctors don't know, and the ones that do don't care. I feel grateful for the little bit of help my rheumie offers. I'm sure he sees people sicker than me, so to him, I'm just a real mild case or just an unhealthy person.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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