question about DR's

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Regular Member

Date Joined Apr 2007
Total Posts : 27
   Posted 9/24/2008 10:48 PM (GMT -6)   
i'm pretty sure i have some kind of AI dysfunction but i am unsure what type of doctor to see. I've brought it to the attention of some doctors i've seen but they didn't listen to me. I have ppo insurance so i don't need to get a refferal from a PCP. I'm thinking of making an appointment with a immunologist. I know rheumatologist's deal with lupus but i don't think my AI (if thats what i have) is lupus. I've never had the rash.

I saw a rheumatologist about a year ago for vitamin d deficiency but i don't want to go back to him because he was really arrogant and blew off some concerns i had about cracking bones.

so i think its an immunologist. has anyone seen one?

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/25/2008 10:05 AM (GMT -6)   
I've never seen an immunologist, so I can't help with that. A good rheumatologist also treats some of the other autoimmune diseases, but it can sometimes take a few tries to get a good rheumy. The first one I saw was like the one you saw, my second one, was a little better, and finally my third rheumy was the one who diagnosed me and has helped me the most. Another option is to see a good internal medicine doctor - they are usually very thorough. Also, there are people with lupus who never get any kind of rash, there is only a certain percentage of people with lupus who ever get a rash. I didn't have any rashes at first, but over time I developed the butterfly rash and I also get rashes now from the sun.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 9/27/2008 8:37 PM (GMT -6)   
Most immunologists are also in some way associated with treating allergies since allergies are caused by the immune system. My advice would be find a good rheumy because they treat most AI diseases. Neurologists treat a few AI diseases as well (i.e. MS). I actually saw an immunologist/allergy specialist for a while. He said he treated allergies and asthma and that my rheumy would treat my AI issues but there may be others out there who treat AI issues only. I dunno. You need to find a really good doctor no matter the specialty because a lot of doctors will say they can treat AI issues but actually are clueless. You need someone who is an expert in diseases like lupus. My grandma has lupus and doesn't get rashes. I on the otherhand do but I also have psoriasis and exema.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 9/27/2008 8:52 PM (GMT -6)   
Alex, I would find another rheumy that you like better than the last one, and get a workup from him or her. A good rheumy would be better equipped to suggest a different specialists than we would. Rheumys treat all kinds of AI diseases. But I agree that I wouldn't go back to the rheumy you saw last year. Many of us have been seen by several rheumys till we found one who was a good fit. Just don't give up.

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

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 9/28/2008 9:35 AM (GMT -6)   
Rheumys treat AI diseases not just lupus.  You need to find one who is experienced in AI diseases and start there.  Many rheumys focus on arthritis and do not see a lot of lupus or other AI patients. 
If you live near a large university hospital or clinic that might be a good place to go as they will bring in whatever specialists are needed. 
Places like Mayos, Cleveland Clinic, Northwestern U., Johns Hopkins are examples of these.  I go to Northwestern and the rheumy brought in several specialists to confirm the diagnosis and make sure that I did not have any serious side effects.  My local doctors had already done some of that but they were more thorough and systematic at Northwestern.  I made sure they had all my medical records before going there so they could give me the best possible evaluation and that we would not go over grounds and tests already done.  I think I submitted 80+ pages of records and test results before the first visit.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, 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

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