Hello all....I have been reading all the discussions for a few weeks now & decided it was time to start posting : ) I was diagnosed with Lupus & Sjogren's Syndrome last June from a random screening that my PCP thought was pre-skin cancer but my dermatologist looked at & dx prior to blood work. Blood work confirmed both dx but with low levels and I was referred to a doc in Cleveland who is way laid back. I have gotten "stress less & sleep more". Argh.... My symptoms are there but as a single mom with a knee replacement, they could all be explained by other issues. I have been on Plaquenil 400mg for three months with limited results. I scheduled a second opinion at the Lupus Center in Pittsburgh for early August. Thoughts on records? Part of me wants a clean second look/treatment plan, but the organized part of me thinks I should be taking my records with me (they have not requested them yet....).
I guess I am tired of the "looks" and the "kid glove" treatment I get from boyfriend, my family and friends since my dx so am thankful I have found this forum where I am learning more than I have in a year of google research. Just need some guidance from those who have managed this for much longer than I : )
I would bring your records, especially lab work. A good doctor should be taking an unbiased look at you, whether they have your records or not. My PCP is not that good. If she doesn't have a record from a doctor, then what I say doesn't matter/exist. My rheumy uses records to see what I've had complaints of in the past and then puts that with what I come in with together like a puzzle, which is what they should be doing.
As for the "looks"... I know my husband gives me the "look" because he's worried. I just tell him not to look at me like that. Haha. I don't know how else to deal with it other than brush it off or ignore it. It's just something you learn to roll with.
If your not satisfied with how your being treated the 2nd opinion will put your mind at rest...my Dermo diagnosed me and i was put onto a crap rheumo where everytime i saw him we ended up argueing and now i'm seeing a great rheumo and who as spoken with me straight...this is what you need from a good rheumo...not weird looks.
Besides Lupus, sjogrens itself will cause you some pain and issues as i also have it, you need to know if you have primary or secondary, we do have a seperate site for sjogrens which would help you also www.sjogrenssyndromesupport.org
With 400mg of plaquenil to help you i'd still give it abit longer as it is an excellent drug and usually takes upto 6mths with some poeple before affect kicks in plus it's a none steriod drug.
Melissa the looks from your boyfriend alot of members have suffered with besides hubbies, try and get him with you to appointments and regarding family let them read or email on the "overview of Lupus" at the top of the main page besides "Understanding Lupus" and regarding friends because the diseases are hidden diseases they think you look ok but it's all down to pure ignorance.
Give your boyfriend a big hug! I’ve lost count of how many people I’ve met who’s family and significant others don’t believe them. They thing the are making it all up. It’s really sad. You’re one of the lucky ones! Give the plaquenil time. Like another poster says, it can take up to six months for it to work. Good luck!
Thank you everyone....my support system is great, but they do not always understand & tend to overreact somedays (which is better than not reacting at all!) I think this forum will be helpful to normalize some of what I am dealing with. Terri - I will definitely check out the Sjogren's site since those levels are super high and it is the one dx that I know the least about. Thanks for the suggestion!
I think i got it confused about your partner sorry by what Amy and yourself have said...so i do apologize.
Yes i would suggest the new sjogrens site as that is an A1 Disease the same as Lupus...you can get it primary or secondary and to which one you have certain involvements come with the disease.
Hugs Terri xxx
Maddiemel said:
Thank you everyone....my support system is great, but they do not always understand & tend to overreact somedays (which is better than not reacting at all!) I think this forum will be helpful to normalize some of what I am dealing with. Terri - I will definitely check out the Sjogren's site since those levels are super high and it is the one dx that I know the least about. Thanks for the suggestion!