Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Hi Debbie, I had the same problem. My ANA was 640 & speckled. Could you snail mail me a copy of the 6 page article that Dr. W. gave you. I would go myself but I am no longer in NY. We moved to Corpus Christi, Texas in April and have not been able to find a decent doc. They either are not taking on any more new patients or I am too complicated for them and they don't want to follow any protocols. So, basically I am taking care of myself through a nearby clinic with a resident who is reluctantly writing my scipts and ordering blood work. I really had to insist on the medications and then they wrote them with the wrong mgs. Then I had to fight with the pharmacy who would not fill the scripts as is. Then I fought with the clinic again to write them properly. They wouldn't trust me to break down the amounts or cut tablets in half. But I finally wore them down and now I have approval for a 90 days supply for a whole year and then the fight starts again. I'm following MP and the guide gets me through. I have to call after each blood work as they do not call me. Damn these doc! They make you sweat it out if you are not marching to their drummer. Anyway, I certainly would appreciate that info. I will pay whatever the cost is. Please, if you can send it, I would very much appreciate it. And thanks for being there these last few years. I enjoy reading your posts and advise. My new address is 1951 Rodd Field Rd. Corpus Christi, 78412---My last name is Rosner. Thanks---Dolores & Mike From: DEBBIE GIBSON <Debbullwinkle@...> Subject: rheumatic Re ANA increase " support group " <rheumatic > Date: Thursday, September 4, 2008, 8:13 PM Some thoughts: I have a friend with diffuse SD, her ANA early on was only 40...the lowest it can be...altho she had skin involvement. ..I, on the other hand...presented with just puffy fingers, joint pain, shortness of breath...and no skin involvement and my ANA lab result was 1280.... My particular subset of the SD is one that rarely has any skin involvement. ...having more internal symptoms.... and the last page of the study done suggests that physicians, Internal Med and otherwise need to evaluate all patients with a positive ANA for this particular subset of SD...patients who have primarily internal organ involvement but little to none skin involvement. .Dr. Whitman gave me the 6 pg copy of the study to give to all my local physicians.. .(who continue to tell me I don't have SD) because I have no skin involvement. Hope this helps some...Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 HI Delores, I will happily copy and mail you the info...one word of caution tho...the test that I had to get is only...or I should say, WAS ONLY available at DR. Medgers Pittsburgh SD research office...I tried, as you will see from my notes...calling every local lab...arghh...not one did the test for the TH-TO antibody subset of SD..Will get that copied and off to you... rheumatic Re ANA increase " support group " <rheumatic > Date: Thursday, September 4, 2008, 8:13 PM Some thoughts: I have a friend with diffuse SD, her ANA early on was only 40...the lowest it can be...altho she had skin involvement. ..I, on the other hand...presented with just puffy fingers, joint pain, shortness of breath...and no skin involvement and my ANA lab result was 1280.... My particular subset of the SD is one that rarely has any skin involvement. ...having more internal symptoms.... and the last page of the study done suggests that physicians, Internal Med and otherwise need to evaluate all patients with a positive ANA for this particular subset of SD...patients who have primarily internal organ involvement but little to none skin involvement. .Dr. Whitman gave me the 6 pg copy of the study to give to all my local physicians.. .(who continue to tell me I don't have SD) because I have no skin involvement. Hope this helps some...Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 Hi Debbie, Thanks, you are a sweetheart! Let me know the cost of everything and I'll be glad to send you a check for everything. I never got anywhere asking questions re: my ANA results from any doc. They just said it meant I had an inflammation. Duh! I could have told them that. In fact I did. My wrists & ankles were swollen for years. Every doc I went to took xrays and said they found nothing. Some thought it was fluid or just shrugged their shoulders and said they found nothing. Some said fatty tissue buildup. How do you like the FDA warning about Remicade, Humira & Enbrel. Cimza (sp) is a new one I hadn't heard of. These are the drugs they wanted to give me when they first diagnosed S/D that I refused and by the grace of God, Lynne G told me about the RBF and that is how I found out about A/P. Not long after I started on Minocin, the swelling in my wrists and ankles started to go down. I haven't had my ANA tested in over a year. I think it is time. I guess with my next appt. I will be ready to fight for that test. The doctors at this clinic I found near my house are all young residents doing their last year of training. They are baffled when I tell them about A/P. They say they never heard of this therapy and don't know how to order the tests for S/D or any arthritic disease. I wish they would take a better interest, but it is not on their tests, so they don't care. They just want to graduate and go on. Well, Have a good night. I dozed for a while a little earlier, so I can't sleep now. Maybe being on the computer will make me sleepy. G'night. Dolores & Mike From: DEBBIE GIBSON <Debbullwinkle@ fuse.net> Subject: rheumatic Re ANA increase " support group " <rheumatic@grou ps.com> Date: Thursday, September 4, 2008, 8:13 PM Some thoughts: I have a friend with diffuse SD, her ANA early on was only 40...the lowest it can be...altho she had skin involvement. ..I, on the other hand...presented with just puffy fingers, joint pain, shortness of breath...and no skin involvement and my ANA lab result was 1280.... My particular subset of the SD is one that rarely has any skin involvement. ...having more internal symptoms.... and the last page of the study done suggests that physicians, Internal Med and otherwise need to evaluate all patients with a positive ANA for this particular subset of SD...patients who have primarily internal organ involvement but little to none skin involvement. .Dr. Whitman gave me the 6 pg copy of the study to give to all my local physicians.. .(who continue to tell me I don't have SD) because I have no skin involvement. Hope this helps some...Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 If you are using Quest Laboratories, you may be able to have the test results mailed directly to you. I get all my test results mailed directly to me from the labs. It is WONDERFUL. I've heard from others that they get test results from LabCorp mailed to them. For Quest, I just fill out a form at each blood draw. This saves me from having to go into the doctor just to get my results. Amy mike rosner wrote: > > Hi Debbie, I had the same problem. My ANA was 640 & speckled. > Could you snail mail me a copy of the 6 page article that Dr. W. gave > you. I would go myself but I am no longer in NY. We moved to Corpus > Christi, Texas in April and have not been able to find a decent doc. > They either are not taking on any more new patients or I am too > complicated for them and they don't want to follow any protocols. So, > basically I am taking care of myself through a nearby clinic with a > resident who is reluctantly writing my scipts and ordering blood > work. I really had to insist on the medications and then they wrote > them with the wrong mgs. Then I had to fight with the pharmacy who > would not fill the scripts as is. Then I fought with the clinic again > to write them properly. They wouldn't trust me to break down the > amounts or cut tablets in half. But I finally wore them down and now > I have approval for a 90 days supply for a whole year and then > the fight starts again. I'm following MP and the guide gets me > through. I have to call after each blood work as they do not call > me. Damn these doc! They make you sweat it out if you are not > marching to their drummer. Anyway, I certainly would appreciate that > info. I will pay whatever the cost is. Please, if you can send it, I > would very much appreciate it. And thanks for being there these last > few years. I enjoy reading your posts and advise. My new address is > 1951 Rodd Field Rd. Corpus Christi, 78412---My last name is Rosner. > Thanks---Dolores & Mike > > > > From: DEBBIE GIBSON <Debbullwinkle@... > <mailto:Debbullwinkle%40fuse.net>> > Subject: rheumatic Re ANA increase > " support group " <rheumatic > <mailto:rheumatic%40>> > Date: Thursday, September 4, 2008, 8:13 PM > > Some thoughts: I have a friend with diffuse SD, her ANA early on was > only 40...the lowest it can be...altho she had skin involvement. ..I, > on the other hand...presented with just puffy fingers, joint pain, > shortness of breath...and no skin involvement and my ANA lab result > was 1280.... > My particular subset of the SD is one that rarely has any skin > involvement. ..having more internal symptoms.... and the last page of > the study done suggests that physicians, Internal Med and otherwise > need to evaluate all patients with a positive ANA for this particular > subset of SD...patients who have primarily internal organ involvement > but little to none skin involvement. .Dr. Whitman gave me the 6 pg > copy of the study to give to all my local physicians.. .(who continue > to tell me I don't have SD) because I have no skin involvement. > Hope this helps some...Debbie > > Quote Link to comment Share on other sites More sharing options...
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