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jothebrit
11-15-2005, 07:30 PM
Just had my second visit with the rheumy, he wants me to start Paquinil as well as the Prednisone. I told him about all the new symptoms I've been having and he kind of blew me off and said they were related to the prednisone. (Hair loss, Brain fog, pain in ankles and knees) I thought these were Lupus related.
Have any of you ever taken both drugs at the same time before?
He also said they found an SAS antibody in my blood, which is related to subacute cutaneous lupus, so he doesn't think I have REAL lupus. So what is real lupus, do your major organs have to be involved? I just feel like he's not wanting to give me a proper diagnosis. I know most of you have gone through this, but just wanted to rave. Thanks

Hatlady, I showed your reply to my boys and they have been helping out alot more this week, my oldest said that he thought I'd gotten the lazy disease (I nearly choked him), but I sat down with them and explained lupus and the spoon theory with them and I guess that helped all of them.
My middle son turned 12 on Sunday and he got up that morning and said
why didn't I just buy a cake, instead of baking one, so we did and it was delicious.
So thanks, sometimes we just need to have other people tell us off.

Jo

girlsquirrel71
11-15-2005, 08:39 PM
Jothebrit- I take both medications you are speaking of right now. I have been on them for a month. HOPEFULLY your rheumy told you that you need to see an opthamologist, to get some baseline readings in your eyes because the plaquenil can effect your vision, you need to go now and then every six months. Lupus is lupus I am learning, what you have is real I have the skin rash, so far that seems to be it. If I could get the rash to settle down I would be happy, for now, dont stress, it makes it worse. Hang in there!!!! :P

PattyLatty
11-15-2005, 09:32 PM
Hello again Jo, Sorry about your doc. I've learned to change rheumy's when I get one that's insensitive. Changing is difficult and time consuming, but for me it was worth looking till I found the right one. My current rheumy is a woman -- she listens, asks questions, and treats me like a human being as opposed to a chart. I wouldn't eat in a restaurant or shop in a store where I was treated like some doctors treat their patients. There are good doctors out there and it's worth the search.

There is a terrific article about Dr. Harley at the Oklahoma Medical Research Foundation, by the way. It's on their website. This doesn't directly address your concerns, but you might enjoy reading about this wonderful doctor who's trying to find a cure for Lupus. I'm fortunate enough to see Dr. Merrill at the Foundation - she's smart and compassionate. But believe me, I went through years of seeing the wrong doctors - men who wouldn't listen to me - rheumy's who treated me as though I were neurotic. I just don't put up with that anymore.

Hooray to you for buying a cake for your son's birthday :lol: , and hooray to your son for suggesting it :P :P . It's hard for me to let go of some of my perfectionism, which is what you and I talkied about in another post, but I'm learning, and it sounds like you are too. You must be doing something right if your 12 year old son understands what you are going through. For me, that's half the battle.

Keep up the good work.

Pat

jothebrit
11-17-2005, 07:25 PM
Wow guys you are the best, just uplifting to read your messages, PattyLatty can I come to Mexico with you 8)
So far no problems with the Paquinil, I know it takes awhile to kick in, but some of you said they had some side effects, so I haven't noticed any :)
Been to work the last two days which felt great (Christmas money-Yeah)
Going to Cub scout camp this weekend with my 9-year old and OMG my hubby is taking the 12 and 14 year-old out of school for 2 days and leaving for Hilton Head early (can you imagine the peace in my house, the 9 year olds the quietest) I'm looking forward to spending 3 days with just the youngest, except it's supposed to be freezing this weekend and we'll be in a puptent. We're going to follow the rest of the crew on Tuesday after school.
Anyway thanks for all your wonderful support!

Hugs Jo

hatlady
11-19-2005, 04:55 AM
:D Been a bit since I've been able to get at the computer!

Sorry the rheumy is such a putz - and I agree, find a new one. I "fired" my first rheumy before I got home from his office. Had to wait a couple months before I was able to go to a different one - who was WONDERFUL. So keep pressing on until you find one who listens.

I'm so glad the Spoon Theory has worked its magic again - it is such a wonderful allegory, it explains so well what we go through!

Hope your son's birthday was wonderful and that the store-bought cake (GOOD FOR YOU! GOOD FOR HIM! :D ) was fantastic!

Cassady
11-19-2005, 10:23 AM
HI all,
I also just had a second rheumy appt. My dh went with me and we took a list a questions. She was so rude. Told me all my blood work was great.(I have been seeing a hemotologist for over a yr. My blood work hasn't been normal in yrs.) She told me I have fibromyalgia and nothing more. My Dh and I tryed to ask about other test that I have had in the past and she told me I need to see my Reg. Dr for that stuff. I had taken her all my medical info on my first visit and it wasn't even in my file this time. When we questioned her about the meds she gave me last time, she said if they aren't working then I should just stop taking them. That I need to learn to deal with the pain and that I didn't need to come back to see her again. As if I would ever go back to her! I'm not really sure what to do next. I wish I could find a dr. that would look at the whole picture. I feel like every dr. I go to looks at just a small piece of the picture.
Sorry for rambling. Had to get it out.
On a positive note I feel really blessed that my dh is so supportive and feel blessed to have found all of you. Hope everyone has a wonderful Thanksgiving.

silverlioness
11-19-2005, 10:40 PM
I figured out that I had lupus on my own. The last piece of my puzzle was requesting a copy of all my blood work. I found that they had performed a Rheumatoid Arthritis screen (the first time I got thrush and freaked out) and they didn't bother to tell me I had a positive ANA. I was relieved to finally put my health puzzle together, but now overwhelmed that I had a serious disease. I wanted answers, treatment, and support.

Ha, ha.

My first Rheumatologist had a limited practice and treated pretty much every thing but immune disorders. But, I asked if he treated lupus when I made the appointment and they said yes. When I got there with all my findings and a copy of my chart from the primary care physician including blood work (with a newly added lupus panel), he treated me like an overreacting hypochondriac idiot. He diagnosed me with fibromyalgia (which is a serious disease in it own right) only and told me primary care physicians always overreact. I had been tested for fibromyalgia years earlier, by a trusted family physician, and I knew I tested negative. I only had two of the tender points. And when this guy tested me, I had only the same two.

Anyway, I cried when I left. My husband said me and him knew what was wrong and that's all that mattered (the sweetest thing he ever said). My symptoms were getting worse and worse, so I asked for a referral to a different doctor for a second opinion. Now I have a good doctor. So, I can feel your pain. It stinks that doctors (intentionally?) contribute negatively to our already stressed-to-the-limit lives. But, you are definitely not alone concerning this subject. I agree with the others -- even though it's tough -- stay strong!