Can some of you with lupus give me any ideas?

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Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 8/16/2007 3:11 PM (GMT -7)   
  I will try to give the shortest version. I have had inflammatory problems for 10 years now. I refused treatment for undifferentiated connective tissue disease because we were having children and the pain was not beyond my tolerance. I had to use fertility treatments to get pregnant, have had problems with my overies not functioning, diabetis, asthma, lung problems. As of last year it has doubled over on me and gotten much worse. I have a rash the Rhuem says is remarkable and looks ike a malar rash but can be from anything including caffiene comsumption. I have sinuvitis, bilateral bursitis, and tendinitis, in addition I was diagnosed  with inflammatory bowel disease after a colonoscopy ( which I had to kick and scream for )
 
  The Dr. was for the most part a prick. He told me I have protein and blood in my urine on various occasions and I should have been scoped for that ( like I am supposed to know these things ) , he told me the rash is remarkable, also there is obvious signs of inflammatory process HOWEVER he also old me if these tests come back negative he didnt not want to see me again.
 
My ana's were high with a speckled pattern ( again he told me meaningless, and yes high not marginal)
he ran acute hepatitis  viral panel
another ana
ena
anti-dbl stranded dna
anti ribosomal P antibody
C-anca P-ance w/ reflex to anti-MPO and anti -PR-3
c3,c4,ch50
 
 This guy was such a piece of work I am not sure where I stand.
Can any of you help me through this process at all? I really appreciate it.
 

CityGirl
Regular Member


Date Joined Dec 2006
Total Posts : 239
   Posted 8/16/2007 4:04 PM (GMT -7)   
Just so I can understand....
 
You had an ANA that came back elevated w/a speckled pattern then you got the next batch of tests listed at the end of your post and they were all normal? 
 
If I am correct in how I understood your post there are some positives.  The fact that you testd negative for double stranded DNA's and your C3 and C4 compliments were normal is a very good thing.  As I understand it, the anti PR 3 test can be related to Wegener's disease and autoimmune vasculitis.
 
The anti ribosomal P antibody is a test for lupus/RA/connective tissue.  If all that came back negative you sound to be in good shape as far as results go.
 
If you are spilling protein or red blood cells in your urine a 24 hour urine catch should be done. 
 
Lupus can be a very difficult disease to diagnose as so many symptoms very.  I am sorry you are so frustrated.  If I read your post correctly though your negative results are a positive thing. 
 
My sister had an elevated ANA w/a speckled pattern and has extensive testing done and everything comes back fine.  A certian percent of the population simply has a positive/elevated ANA.  It could mean nothing or it could mean something.  If the tests are all negative though it is a good thing.

Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 8/16/2007 4:09 PM (GMT -7)   
CityGirl,

No no, I have not had the results come back yet. He ran them all on me this morning to follow the positive ana speckled pattern. He told me if the results are negative not to come back, if they are positive were looking at Lupus. My question is, is this the way to deal with a patient with noted diagnosed AI problems?

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/16/2007 4:47 PM (GMT -7)   
Chaya,

That's not the way to treat any patient. If a doctor treated me the way you described yours I would run, not walk, to find another doctor. You didn't mention whether or not this doctor was a reumy. If not, it sounds like you need to see a reumatologist. If so, you need to find a different one. If you do, take all the lab results with you and a list of any and all of the symptoms you've had during the past ten years. It can take sometimes months to get in to see a good rheumy so you may have to be patient.

The way Complement levels have been described to me by my last two rheumy's is that you can have lupus and yet have normal complement levels. If they are low, that's an indication of active disease.

I'm not a doctor, but I live with lupus and I feel that if you have AI problems, an elevated ANA, and the other problems you describe, you need to keep looking for a doctor who will treat you like a human being and help you get a diagnosis. If you have a primary care doctor, he or she should be able to refer you to a good rheumy.

Good luck. I'm sure others here will have more suggestions for you. Good luck, and don't give up. And keep us up to date on your progress.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 8/16/2007 5:02 PM (GMT -7)   
Thank you Patty! I am so clueless as to what I am doing. The Rhuemy came into the office and sat down in front of his computer and said NOTHING to me for 5 mins!!!!! NO hello, nothing! I cleared my throat a cpl times and he did not even look up. He told me bi-lateral bursitis is COMMON , fachitis ( spelling?) in my foot is COMMON, the rash over my face remarkable but in and of itself meaningless, my CBC looked great so he felt like things were good. He asked me if I had mental problems and have I been checked for that rotfl. He suggested to me that my IBD dx was IBS instead and I told him GI dr.'s base that on PATHOLOGY not random acts of guessing and he replied he si not a GI Dr. ( No but he was an ******) He did not see hot swollen joints today . He did see lung problems and he actually became ALMOST concerned over the urine issue. Then sort of nastily inferred I did not take care of myself by not going to a urologist. This AI crap is insideous and hard for me to figure out. I hate feeling like a hypochondriac so I deal with it more often then not. I am struggling now though as riding in the car makes my skin respond where it used to be sitting out in it. I did ask him if he could tell me if this AI process I have will go after my organs? He says it could and it would get very ugly. Well freaking figure me out then! He looks at me and says , Chaya, you dont want lupus, its a nasty disease. I said look I didnt want inflammatory bowel disease either and I got that. This isnt about wanting, its about reality. I feel like giving up. I had to fight like a son of a ***** to get scoped for my bowels! I am too tired to fight these ******s. Who is good at John's Hopkins? any ideas?

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/16/2007 6:42 PM (GMT -7)   
Chaya, I strongly second EVERYTHING Patty said to you. Run, run, run to another doctor. No one wants an AI disease but if you are feeling sick and know that something is very wrong, you sure want a name to put with it and validation from a doctor who will not only try to figure out a diagnosis but will also work hard to help you feel better.

What I have been told about a positive ANA is that some healthy people do have a positive ANA, but if you have a positive ANA along with symptoms, then it's a pretty good indicator that you have some sore of autoimmune issue. The positive ANA along with all of your other symptoms and the protein and blood in your urine really need to be taken seriously.

I get really angry when I hear about doctors like the one you went too. These kinds of stories are getting all too familiar. I think one of the reasons I get so mad about it is that I went through it too. It took me about 3 years and my 3rd rheumy to get a diagnosis. By the time I went to my 3rd rheumy I could barely walk because of the severe joint pain and was running daily fevers as well as having consistent protein in my urine. That rheumy looked and me and looked at my history and diagnosed me that day. He started me on prednisone and adjusted other meds which has helped me to at least get some sort of a life back.

Please keep looking until you find a really good doctor who will listen and help. Let us know if you have other questions. We're a very supportive group of people and will try our best to help you out.

Take care and keep us posted on how things are going.
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.

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Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 8/16/2007 7:21 PM (GMT -7)   
Sounds like you might have uctd or mctd.  Do you have any muscle weakness or swallowing problems?
 
There is a new myositis clinic at Johns Hopkins and I would suggest that you contact them. 
 
 
They might be able to help you get a handle on what you have.  I have spoken (on another forum) with several people who have gone and are quite pleased. 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (7mg & tapering), 100mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


CityGirl
Regular Member


Date Joined Dec 2006
Total Posts : 239
   Posted 8/16/2007 7:27 PM (GMT -7)   

Sorry!  I totally misread your post!  I thought all the tests you had came back normal.  Please pardon me for misunderstanding.

I agree 100% with the others... find a new dr.  There is no reason for a patient to be treated like they are a bother. 

C3 and C4 compliments can be tough since most of us dont have any sort of baseline to compare with.  Some people naturally have lower compliments and have nothing wrong.  If your C3 is low and your C4 is normal and you are spilling protein it can be an indicator something might not be right in your kidneys.  It could be something as simple as inflammation.  I had the very same thing happen to me in April. 

Sorry I misread your post and I hope you can find a new dr. soon!


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/16/2007 7:39 PM (GMT -7)   
Hi, Chaya. I totally agree with what everyone else has posted! You definitely need to find another rheumy! I am on my third one. I have people in my local support group who are on #4, so jack*** docs are a common problem! The fact that you are hurting is UNCOMMON! I'm no doc therefore I don't know what the problem is, but all too often I think some docs forget that IS what they get paid for! You definitely have symptoms of something that need serious attention! It was actually a pulmonologist who discovered through testing that I had lupus, so just finding a doc that WILL listen is most important. I wish you good luck. Please let us know how it goes.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/16/2007 9:37 PM (GMT -7)   
I agree 100% with everyone that you need to find another doctor. Sometimes these docs are very insensitive which I just don't understand because they know more than anyone how hard these diseases are to diagnose. I would also suggest maybe going to see a dermatologist for your rashes. He/she might be able to shed some light on what type of rashes they are, make sure to see if you can find someone that deals with Lupus or systemic diseases. I sure hope you can find a better doctor and FIRE this one!!
"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 PRN, Miralax 17g, Supplements


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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/17/2007 9:38 AM (GMT -7)   
Hi Chaya--
I agree with everyone else. Sometimes the big docs in the fancy medical places or that are reputed to be the "best" aren't the best for us. Often, a caring competent, less well-known physician will do a better job for you. Johns-Hopkins almost ensures arrogance, and med ctrs like that act like why are you wasting my time, come back once your on deaths door.

The main thing is that the doctor you get listens to you and believes you and perhaps a good rheumie outside of a huge center might be more helpful, provided they are good. It's good he ran the tests. I always, everytime they check it have a high ANA with speckled pattern, I am neg for ds-dna, ssa, ssb, rheumatoid factor, complements sometimes out of whack, other bloodwork strangely abnormal, but not indicative of a particular disorder. I do have extremely dry eyes and was diagnosed with a "sjogrens like, lupus-like disorder" and treated with plaquenil, a milder immunosuppressant/antimalarial. I also have IBS, diverticulosis, autoimmune thyroid disease (hashimotos) and other endocrine disorders. In my case, over thirteen years I was told that I "didn't want to be sick, that so many patients with hepc and that have been on interferon develop autoimmune disease and I just didn't want to be one of them, that they had seen so many young people die of these problems" like I could stop it by just wishing it away.

In my case, the doctor feels that my Autoimmune condition is secondary to some other problem that is yet undiagnosed. There is primary autoimmune disease and secondary autoimmune disease and he explained that in secondary autoimmune disease, patients often don't have the genetic markers that many less skilled physicians assume MUST be there for a diagnosis of AI disease. I also have skin problems. It sounds like they were willing to treat you for CT disease at one point, did you get results from the tests done by that doc and bring them to the new rheumie? Maybe that will help. Could be that your doc feels you are just not sick enough to warrant his great expertise, and that even if you have AI disease, he feels another doc can manage it. Its totally arrogant, but it happens. I wish you the best on your tests. Also, if you are having liver problems or have had hepc in the past or taken interferon, I have alot of info about that, any of those things can trigger autoimmune disease.

As for the rash, sounds like mine. Does it go away when you take antihistamines? Sometimes I get red when my histamines are high, I can press on my arms and the red will go away, and if I get scratched in any way, it stays red for some time. But having put roseacea cream on the face for a while now with no improvement, perhaps worsening, I can tell you that it does not have to be raised to AI type rash. Maybe you can get a referral to a dermatologist on that and it would help with diagnosis?

It sounds from your post that you are really having a time of it. A second opinion is always an ok thing. I sure hope you feel better and get this squared away and figure out what is wrong and get it fixed. On the urology side, the scope is no big deal, but that only tells about bladder, I do have polyps on my urethra and they cause a lot of bleeding sometimes, even when I wipe, which really freaked me out since I have had a hysterectomy long ago! I thought it grew back! The scope will tell you nothing about your kidneys, which would be the protein part and you need a catscan or mri of kidneys and other tests for that, but a urologist wouldn't be bad to go to, they can do a cystoscope right then and there and give you some answers.

Well, I'm sorry you are so sick and I hope you feel better. Let me know if you need liver info.
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


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/17/2007 11:44 AM (GMT -7)   
Chaya - Ditto! I'm with the rest on this. These doctors can have you thinking your crazy by the time they are done with you. I don't think they really want to give anyone the diagnosis of lupus. Maybe they get money for telling us we don't have it. NO ONE WANTS IT!!! I rather they took a limb or something that I could hopefully one day adjust to and don't have to disrupt and fear for my life once or twice a year. I have lost everything from this illness; my home, my jobs, my kids, my family, my friends, my hobbies, my health, etc. ect. etc. Oh boy that sounds great!! Please, please sign me up for lupus. Crazy or not - Who would want this??? Do people really want cancer? MS? ALS? I mean, come on already! Who wants to be sick all the time? NOT ME. You couldn't pay me $20 Million to take on this disease. I would laugh in your face. All I can say is that any doctor who would make such a ridiculous comment is either insane or stupid. I usually pick the later.

Research the rheumatologists within your traveling range. Check to see if they specialize in lupus. The sooner the better. I originally had health insurance. Due to losing jobs and from being ill, I no longer can work full-time and, therefore, I don't have insurance. Now my only choice is the worst doctors money can't buy. I wish I pushed harder in the beginning, but I didn't have the foresight to know this would happen to me. A great doctor and great insurance is your best defense. I pray you fair better than I. It is my prayer for everyone. It is worth doing your homework and getting the best you can.

Keep letting us know how things progress. We are always here for you. Best wishes - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 8/18/2007 10:01 AM (GMT -7)   

Hi Chaya,

   I'm sorry your having to go through this. It is bad enough to be sick, then have a doctor treat you that way is uncalled for! (((Hugs))).

   I agree with the others about finding another doctor that will be more understanding, caring and help you find the answers and relief you need. I think alot of us know what your going through and it can be a bad rollar coaster ride. It took me 13 years to get diagnosed. I pray you will find the answers quickly.

   Hang in there and don't give up. Keep us updated and take care. You will be in my thoughts and prayers.

                                                                    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.


curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 8/18/2007 3:03 PM (GMT -7)   

Hi Chaya,

With all your symptoms you obviously have something going on. You need a concerned, knowledgeable, and understanding rheumy. Even if the rest of your tests come back normal he should be treating your symptoms. Blood and protein in your urine could be an indication of a kidney problem and should be addressed, (by a nephrologist; kidney specialist) along with your pain and inflammation. I have kidney involvement and the only positive lab I have ever had is the ana. I have also been given a diagnosis of lupus by both my rheumy and my nephrologist. Find another rheumy!!!!! Good luck and hang in there.

Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, lasix, klor-con


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 8/18/2007 3:54 PM (GMT -7)   
I appreciate all the help. I saw a post with the local Lupus chapter and this is my next quest for Monday. I sure as hell hope they dont give a list of ALL  rhuemies as I have that. I need a list of Doc's that listen and r not pricks. I am going to see my GP MOnday and ask why they feel comfortable allowing me to have this kind of pain and being satisfied with it? I took my kids to see Rush Hour 3 and could not concentrate on a darn thing! I sit forward, I get relief for 15 seconds from my back. I sit back and my hips ache. I bring my feet up and my feet feel better but my knees start to hurt. I have to move around alot to find comfort. Sitting for a long time is a big mistake. My 2 Doc's tell me its normal at my age to have all of these problems. I am 37!!!!!!!!!! not 67. I would love to bend these rhuemies over and stick something so far up their a@@ they have trouble sitting for weeks. Sorry to complain so much but I am sick and tired of pain. I have been " sucking" it up for years and I cant anymore. Not have the IBD dx. You know its funny guys, I have a TON of positive results not just negative ones. They HAVE  something to go on. I loved the question am I mentally stable? Geeee Doc, NO I am freaking nuts! I lie for pleasure, I enjoy torment. I create rashes with liqued blush, I need cortisone shots in my hips that you prescribed because I put a hex on you and made you do it, I am nuts and I figure lets waste your time and mine ok? I have loads of money to spare and you get to cop a feel up my shirt!

Blissy10
Regular Member


Date Joined Jul 2016
Total Posts : 40
   Posted 7/7/2016 10:15 PM (GMT -7)   
This is also along a similar line, I hope you don't mind and additional question...I have normal tests: ana is OK , normal c3 and c4 ok, but the Ch50 which is high (over 60) sed rate 20 and crp 5.6, I have the butterfly rash, extreme photosensitivity, break out in hives, tingling fingertips that sometimes swell, debilitating fatique (and I mean DEBILITATING, sleeping 15 to 20 hours a day for weeks in a row, and then I am OK again) and swollen glands under my jaw for the last 2 years. Does anyone know what this could be since it doesn't appear to be lupus? Very concerned and confused... Thanks, any insight would be appreciated. Dr says its just fibro, which I know I have, but I cant make sense of these ongoing swollen glands. They suspect sjorgrens but the tests have come back Ok for sjorgrens too...The exhaustion is the worse thing, and the only thing that has managed to keep my energy level up is a low dose of phentramine for weight loss. Off the phentramine, I am too week to teach, and consider myself disabled at this point.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 7/8/2016 8:30 AM (GMT -7)   
Blissy, please don't repeat the same posts on multiple threads. Additionally, there is no point in posting on a thread from 2007, the original posters are probably long gone.

Thanks.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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