finally heard from doctor- frustrated

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alli sunshine
Regular Member

Date Joined May 2009
Total Posts : 40
   Posted 7/1/2009 9:40 AM (GMT -6)   
I had to call to get the results of my labs. Spoke to the assistant who said my lupus test was negative, don't know what test that was that told that. (Previous ana was 1:640.) Told me doc wanted me to see a podiatrist for my feet and come back in 8 weeks. Now, if you remember, I stupidly had my rheumy appt. the day after a uterine ablation, so I was full of drugs, including toradol, which is a huge anti-inflamatory. I was feeling better than I had in weeks. Well, the pain in my feet came back late in the week, and now my elbow is sore again as well. I have had pain in my hands, especially my pinky.

Here is my question, I guess. My worst pain was in my feet, no doubt. However, I had considerable pain in my elbow and in my hands at times. I also have lots of fatigue, though I am slighty anemic still, which could be causing some of that. So, he dismisses the rest of my pain, etc., except the feet? Also the Raynauds I have had for quite a while? I would be feeling a lot better about this if my initial ana was not so high.

Also, I have been diagnosed with gastroparesis. Essentially, my stomach does not empty or digest food properly. This explains tons of my stomach issues. Has anyone ever heard of this being the cause of a high ANA?

Thanks again for all your support. I am now feeling like I am crazy and he thinks I am making this all up. Should I call him again when I am feeling bad, or should I just accept that there is nothing wrong with me and live with the pain and other stuff I have?

Thanks for any insight.

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 7/1/2009 10:19 AM (GMT -6)   

I'd find a doctor who will take the time to discuss these problems with you and help you understand what's going on. There are doctors out there who are very thorough and detailed and will spend time going over your labs with you. Both my PCP and my rheumy order labs to be done prior to my appointments, so when I see them, we go over the labs and discuss any problems I might be having.

Find another doctor if you are not happy with the one you have.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 7/1/2009 10:35 AM (GMT -6)   
Hi Sunshine, well welcome to the exclusive group of my friends and family think I'm crazy and my doctor thinks I'm lying to get drugs.
I'm sorry you have to go through this but trust me I don't know how many times I have heard people here say that in the past 2 years. Also stop saying you "stupidly" I mean we do the best we can and frustrating ourself does not help. I'm sure you know an ANA is only one test and it by itself is not enough to make a dx. I'm been sick for years and just got DX'd. and I have been undx'd before too. I have come to the conclusion unles they do a skin biopsy or something that they go by their best guess.
I don't know what an average possitive ANA is but I have had rheumies tell me I was fine with an ANA of 1:2560. I was at the rheumy two weeks ago and I flat out asked him does a high possitive ana mean you have something or you don't have something? His educated answer was YES.???????? So they don't even know. I'm telling you that so that you don't get to stuck on the numbers. What you need is to consentrate on your symptoms and get the most help with quality of life management. You should not have to be in pain all the time. I'm no dr. but I don't think the stomach problems would cause a possitive ANA. But you should ask your rheumy's nurse to gt back to you or google it might show you something.
Ok bottom line just because your test came back neg. does not mean that nothing is wrong. It could mean it just isn't active right now. Then again it would be great to find out it is something else that is not such a life altering problem. I don't think he would have you come back in 8 weeks if he thought you were lying. That is actually quite quick. I usually see a rheumy twice a year unless something comes up.
Try to relax.. You know your body. Most dr. will treat your symptoms even without a dx. if your rheumy is not willling to do that you may want to consider a new rheumy. I have lost track of how many I have gone through. I remember the first time I went to one. I thought man this guy is a specialist. He's blowing me off. I feel like a real fool being here. I came here and talked to people about what he said and they were all a huge support. Most of them are still here. (thank goodness) . They helped me and they will help you. You're not alone in this.
hang in there
 systemic scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
Bear ye one another's burdens
Galatians 6:2 KJV


Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 7/2/2009 9:57 AM (GMT -6)   
Hi alli, I have read a lot that says that sometimes the symptoms precede the blood markers. How are your inflammation markers? If they were elevated, I would address that with the doc. If these are consistently elevated, then something isn't right and you need to push for care and treatment. No one should suffer. If they are willing to treat you, then a label is really not all that necessary. Make sure that you keep a paper with all of your symptoms also and keep it with you so you can write when something isn't right. One or two symptoms might not tell a whole story but when you have multiple symptoms, sometimes doctors can put the pieces together. It's good to write the time and date and if you are on any medication when these happen. I wish you luck alli!
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

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