So yesterday I had to go see my primary care doctor to basically get him to fill out paperwork for my job and also to be able to get a disabled parking pass. I only have 15 minutes of his time. Last time I saw him was May 23th which at that time I was using a wheel chair. Now I am using a walker with seat. So I tell him I am still very weak, my legs are wobbly and my ankles swell up every day. I tell him I am so very tired all the time and have fuzzy brain. I tell him I can not eat very much, and am still losing weight. He had put me on plaquenil back on May 19th. The only thing that has changed since my last visit with him was that my rash is now about 95% gone. Still have a lot of leg pain. So now he decides I have mixed connective tissue disease and orders blood test. Complement 50. sed rate and C reactive protein as well as lipid panel. He was so pleased with himself that my rash is almost gone. So on the print out they give you about your visit he writes that I have had remarkable improvement since my last visit. Really, I still can't work, I still feel like crap and my legs are inflamed. But my rash is almost gone so I quess that must be my remarkable improvement? I just don't see it that way. Can't wait to see the rheum on June 23rd and hopefully he will be educated enough to know what it is I have. I highly suspect it is Lupus. I looked up MCTD and I don't have enough of the symptoms for that but when I look up Lupus it decribes best what I am going thur. Got to go back to him on June 16th so should have blood test results. I wonder what he will say I have this time?
Good luck with the education. I am on my 3 rhyme because I research everything. I have found that most all doctors do not educate. That God for good websites from hospitals to help you educate. Good luck. Please make him answer your questions and if you dont understand tell him.
It sounds like you need a second opinion, your doctor doesn't seem to concerned about your other problems and I'm not a doctor or anything but it does sound like lupus. I hope you get the answers your looking for but don't just stop at one doctor. When i first found out i had lupus i had to go to many doctors to find the right ones. Having the best team of doctors behind you is very important.
I’m so sorry that your primary doctor doesn’t get it. I have the opposite problem. My primary is trying hard to get my pain under control while the rhumy seems to.think that because my rash is gone all I need is over the counter pain relievers ands products to counter act dry eyes, sinuses, and mouth. She has even" in un-diagnosed" the lupus. Sigh…and the fight goes on. good luck and keep fighting the good fight.
Too many docs treat lab results rather then the patient. Many Lupus patients do not have positive lab results.
If you have access to an indoor pool...gentle movement helps. Even a warm pool will feel cool as you are a hot lady!
Have been dealing with this since 1976....in a flare now but have been flare free for 5 years. I take corn starch and water with a piece of paper towel stick in refrig and then put some of the cornstarch on face along with cool paper towel...ice is too cold and feels like burning after use it.Hang in there and learn what works for you and write in a journal. Hug coming your way.
Oh man, that sounds like where Im headed. I have lost so much weight in the last couple months my rheummy put me on something called Megestrol. Wow…I can actually eat now. At the very least, if we can eat, its half the battle for not feeling so crappy.
Lone wolf…Ive also heard about steroid use and weight gain…but when ever I go on a prednisone taper, it makes me loose my appetite.
My pcp would say the same about me, he read my Rheu information and he told me he didn’t see the same as he did. As long as you have a good Rheu and he right out the paperwork you should be able to get your disability .Im having a lot of GI problems can’t get bowel to work then I get sick becomes nausea and throw up. It seems like nothing goes thur and I have went to pcp several time put on diffent Meds and nothing work went to ER and gave me more med and here I am 7 days no BM does anyone have any suggestion, can’t eat can’t drink most of the time. I’m just miserable .
I hope you have better luck with your Rheumy than you did with your primary! I have learned the hard way that many primary care docs don't have a good understanding of lupus. just because your rash is better doesn't mean that YOU are better. There are times when I feel like crap and people say well you look fine they have no understanding that people with lupus may look fine but there is a lot going on inside. I will keep you in my prayers.
Best of Luck
Piewacket
Anita, I too have the not so regular BM. I think it is because of the pain meds. I do take a laxative and am able to do it about every 3 days now. As for the nausea and not being able to eat, a friend suggested I smoke some pot and at this point I was willing to try anything. I had lost 25 pounds since May 5th on what I call the Lupus diet. I smoked some pot and quess what, I am able to eat something without nausea and it helps me relax too and not be so stressed out. Just a suggestion but it worked for me!
Anita Chandlef said:
My pcp would say the same about me, he read my Rheu information and he told me he didn't see the same as he did. As long as you have a good Rheu and he right out the paperwork you should be able to get your disability .Im having a lot of GI problems can't get bowel to work then I get sick becomes nausea and throw up. It seems like nothing goes thur and I have went to pcp several time put on diffent Meds and nothing work went to ER and gave me more med and here I am 7 days no BM does anyone have any suggestion, can't eat can't drink most of the time. I'm just miserable .
My rhemuy filled out all my docs. Primary dr don’t understand the full affects of lupus , etc. I see a rheumatologist and oncologist. Both work together regarding my care. You need to find the right match that will help you in all aspects. You have to read up on all your symptoms and go to the dr w questions. Know that you must be your own advocate.