Good Morning,
I am new to all of this. I just found out that after years of pain that I have Lupus. I do not no what form I have as my primary care doc could not tell me. I could not get an appointment until March 3 with a Rheumatologist. I am going crazy because I do not know very much about this disease. I was wondering if anyone could please give me some ideas on what to ask the Rheumatologist when I see him.
hello minxie40; seems we're in the same boat. i came to this board, just a few weeks ago, being newly diagnosed. my first appt with rheumatologist is tomorrow (2-27). i too was looking for answers as to what they will do, what i should expect, how should i prepare. i understand your years of pain, going unanswered, too. i'll pray for you and hope that we both get answers to what our appts will be like. take care and stay positive. Feather
Take a list with you…questions…problems…
I have my first appointment on March 12th. Let us know how you make out and what you learn. Thank you and good luck. Joan
Definitely take a list. The first appt. They usually spend more time with u. Think of everything u have had or gone thru over the years…rashes, fevers, aches and pains, stomach issues, diarrhea, dizziness, weakness…you name it. Has the sun had any effect on u?..tired, listless? Any swollen joints? They may take blood tests.
Hi Minxie,
What doc originally diagnosed you?
Thank you for responding. Let me know how things went for you. I'm on pins and needles. The waiting game is the worst. Thank you for your prayers. I am praying for you and your family.
Feather said:
hello minxie40; seems we're in the same boat. i came to this board, just a few weeks ago, being newly diagnosed. my first appt with rheumatologist is tomorrow (2-27). i too was looking for answers as to what they will do, what i should expect, how should i prepare. i understand your years of pain, going unanswered, too. i'll pray for you and hope that we both get answers to what our appts will be like. take care and stay positive. Feather
I have my list of things to take. Thank you.
awesomed said:
Take a list with you...questions...problems...
I will let you all know what I have learned and what to expect. Thank you.
Pvbjoan said:
I have my first appointment on March 12th. Let us know how you make out and what you learn. Thank you and good luck. Joan
Thank you this, I actually missed a few things in my list.
Steen said:
Definitely take a list. The first appt. They usually spend more time with u. Think of everything u have had or gone thru over the years....rashes, fevers, aches and pains, stomach issues, diarrhea, dizziness, weakness...you name it. Has the sun had any effect on u?...tired, listless? Any swollen joints? They may take blood tests.
I actually went in to my primary care physician. I went in to check to see if I had diabetes. My husband has it and I had a feeling but my husband had me check my blood glucose levels with his monitor. My at rest rate was between 128 mg/dl to 160 mg/dl over 5 days. My 2 hour after eating levels ranged from 180 mg/dl to 260 mg/dl. When I went to see my doc, my a1c was 8.2 and the blood glucose was 189 mg/dl. I described some other issues I was having because I thought they might be related to diabetes. My doc was concerned that I might have Lupus, so she ordered blood work. My ANA came up positive, she also mentioned some other blood markers that I don't remember. She said my chances of having Lupus were high. She had me call the rheumatologist while still in her office to see if I could get in right away.
Steen said:
Hi Minxie,
What doc originally diagnosed you?
Thank you all for your replies. I will keep you all posted.
hi minxie, I totally understand how many questions you must have for your reuhmy regarding your suspected condition. But it is a good thing you already know what you can discuss with your doctor, as in my case my physician referred me directly to a reuhmatologist without giving me a heads up or at least tell what he suspects my condition to be. when i was diagnosed with SLE, i had no idea what it was. It was after the first appointment with reuhmy i started exploring and educating myself about the disease. my suggestion is educate yourself more about the disease, i am sure many questions would pop.
I prefer to jot down points and make a list before seeing my reuhmy. remember to discuss your issues like photo sensitivity, pain, stiffness in joints, nausea, stomach related issues, swelling in joints, fatigue, fever/ temperature, dizziness etc. I prefer to ask possible side-effects of the meds prescribed as well, since in India docs usually don’t bother to educate patients much. Hope these would help, stay strong. 
Thank you for your response.
Pollen Grains said:
hi minxie, I totally understand how many questions you must have for your reuhmy regarding your suspected condition. But it is a good thing you already know what you can discuss with your doctor, as in my case my physician referred me directly to a reuhmatologist without giving me a heads up or at least tell what he suspects my condition to be. when i was diagnosed with SLE, i had no idea what it was. It was after the first appointment with reuhmy i started exploring and educating myself about the disease. my suggestion is educate yourself more about the disease, i am sure many questions would pop.
I prefer to jot down points and make a list before seeing my reuhmy. remember to discuss your issues like photo sensitivity, pain, stiffness in joints, nausea, stomach related issues, swelling in joints, fatigue, fever/ temperature, dizziness etc. I prefer to ask possible side-effects of the meds prescribed as well, since in India docs usually don’t bother to educate patients much. Hope these would help, stay strong.
If you are worried about part of the disease specifically, i would ask. I sit still or journal and try to see what concerns you the most...such as will i be able to continue to work, play sports, or some favorite pass time. You might ask about their ideas about treatment.
I personally would stay far away from any doctor who hands out steroid pills easily or plans to keep you on them longer than few weeks at most. There are many other options that are much safer.
Do you want to participate in what drugs you take and treatments...if so please let the doctor know that you want to be treated as a partner and together you decide about treatments, pills etc.
Will he work with your other doctors...there is great story that another person left about NY times article which a lot of serious trouble could have been prevented if the specialist had just consulted with the patients original doctor. My experience is that doctors who work together the patient wins out.
Mainly just look in yourself to find what worries you the most right now...you can keep asking other not so pushing questions later. I rather you came home feeling that you are not so worried than overly worried.
Wish you the best and also if you feel that this rheum is not a good match feel free to look for others.
I also forgot to mention that I take pictures of myself…any rashes or sores and swollen areas. I keep a notebook of these and of dates, how I feel, energy level, etc.
Hi Minxie40-
I am newer to site as well! I can can honestly say the silver lining for me was getting diagnosed finally,for something I was the only one who believed I had. My husband and family (who are great) all just kept thinking I was a hypochondriac! This went on for 2-3 years! After 5 or more hospital visits a year with pluerisy, pericarditis, sinus surgery and rashes all over my hands, face (aka butterfly rash),terrrible livideo rectalis and most horribly sores all over my mouth! I finallly got to a Rhuemy during a horrible flare! My ANA, that had previously flucuated slight positve and negative for a year, was now moderate to severe. My rashes become so pronounced I became a study rabbit for students:) Weirdest feeling I had was…complete relief!! I was so sick of my family thinking I was crazy and allowing me to second guess my own body, that I could have ended up letting it go on without getting the proper treatment! I was diagnosed with SLE, Sjogrens and Rauynauds. My biggest suggestion, or actually agreement with previous poster,is to doocument everything with photos. I have photos of all my rashes and journal my blood pressure, joint pain, hair loss, bruising, etc. Don’t leave anything out because you may think it’s not related because it probably is somehow. You will get through this because the alternative is the unknown, and for me personaly that is far worse than knowing and taking advantage of the treatment options now available. Best of Luck!
OllieVy
Thank you so much for sharing. I will definitely keep you posted.
OllieVy said:
Hi Minxie40-
I am newer to site as well! I can can honestly say the silver lining for me was getting diagnosed finally,for something I was the only one who believed I had. My husband and family (who are great) all just kept thinking I was a hypochondriac! This went on for 2-3 years! After 5 or more hospital visits a year with pluerisy, pericarditis, sinus surgery and rashes all over my hands, face (aka butterfly rash),terrrible livideo rectalis and most horribly sores all over my mouth! I finallly got to a Rhuemy during a horrible flare! My ANA, that had previously flucuated slight positve and negative for a year, was now moderate to severe. My rashes become so pronounced I became a study rabbit for students:) Weirdest feeling I had was....complete relief!! I was so sick of my family thinking I was crazy and allowing me to second guess my own body, that I could have ended up letting it go on without getting the proper treatment! I was diagnosed with SLE, Sjogrens and Rauynauds. My biggest suggestion, or actually agreement with previous poster,is to doocument everything with photos. I have photos of all my rashes and journal my blood pressure, joint pain, hair loss, bruising, etc. Don't leave anything out because you may think it's not related because it probably is somehow. You will get through this because the alternative is the unknown, and for me personaly that is far worse than knowing and taking advantage of the treatment options now available. Best of Luck!
OllieVy
Great advise. Thank you.
siskiyousis said:
If you are worried about part of the disease specifically, i would ask. I sit still or journal and try to see what concerns you the most...such as will i be able to continue to work, play sports, or some favorite pass time. You might ask about their ideas about treatment.
I personally would stay far away from any doctor who hands out steroid pills easily or plans to keep you on them longer than few weeks at most. There are many other options that are much safer.
Do you want to participate in what drugs you take and treatments...if so please let the doctor know that you want to be treated as a partner and together you decide about treatments, pills etc.
Will he work with your other doctors...there is great story that another person left about NY times article which a lot of serious trouble could have been prevented if the specialist had just consulted with the patients original doctor. My experience is that doctors who work together the patient wins out.
Mainly just look in yourself to find what worries you the most right now...you can keep asking other not so pushing questions later. I rather you came home feeling that you are not so worried than overly worried.
Wish you the best and also if you feel that this rheum is not a good match feel free to look for others.
