Scleroderma Information » Scleroderma » Getting diagnosed, Part Deux
Question:
Martha, I was tested for lyme, also. I wonder if rheumies are looking for some type of link between the diseases? Or are they just following set procedures, as you said, ruling other things out? Jo NJ
Response:
"Martha" <masr…@nospam.lycos.com> wrote in message
news:dr_47.40430$C81.3379667@bgtnsc04-news.ops.worldnet.att.net… snipped > She was > particulary interested in family history of autoimmune diseases and what the > rheumy I saw five years ago said. She thought he was a moron.
Hahahaha! snipped > So I’m still on hold until I see a rheumy and get the results of all the > tests. This could be a very long process.
Not that long – it’s already underway. You’re the catalyst, so stay after it. If it is SD, it’s likely to be a much longer process living with it…
Response:
I just had first visit with primary care physician. She seems okay, and I have no reason to want to switch right now. We talked about the swallowing problems. She thinks I have erosive esophagitis and is sending me for another endoscopy ASAP. Then she took one look at my fingers and asked if I knew what scleroderma was. She was particulary interested in family history of autoimmune diseases and what the rheumy I saw five years ago said. She thought he was a moron. They took blood for another ANA, ESR and rheumatoid factor, and also Lyme Disease (which surprised me until she explained she had to rule it out even though I haven’t seen a tick in 30 years). I’m at the point where an internist thinks it’s a definite possibility, though not a certainty, and has referred me to a rheumy, but the rheumy doesn’t have any appointments until December. I told the receptionist that was no good and to get me a referral to another rheumy. At least I’m not totally off the mark since she wrote "possible scleroderma" right on the referral. So I’m still on hold until I see a rheumy and get the results of all the tests. This could be a very long process.
Response:
I guess there is some kind of connection (see previous post from Art Doherty) but I’m not exactly sure what it is. But the doc said she is hamstrung by the managed care system so she can’t order certain tests until she has ruled out other things or the insurance won’t pay for it. So it’s a little of both – Hide quoted text — Show quoted text -"LJL" <l…@nac.net> wrote in message news:3B548338.37009F73@nac.net… > Martha, I was tested for lyme, also. I wonder if rheumies are looking > for some type of link between the diseases? > Or are they just following set procedures, as you said, ruling other > things out? > Jo > NJ
Response:
Hi, Martha, I’m with all the others…you’re well on your way to finding out what’s going on. Once you’re cleared for some other tests and get to a rheum/internist for further pokes and prods, Boston is rife with good docs! Hang in and deal with what comes as best you can. And no question is insignificant…chances are, someone here has been through it and can help out. 
–Jaimes – Hide quoted text — Show quoted text -Martha wrote: > I just had first visit with primary care physician. She seems okay, and I > have no reason to want to switch right now. > We talked about the swallowing problems. She thinks I have erosive > esophagitis and is sending me for another endoscopy ASAP. Then she took one > look at my fingers and asked if I knew what scleroderma was. She was > particulary interested in family history of autoimmune diseases and what the > rheumy I saw five years ago said. She thought he was a moron. > They took blood for another ANA, ESR and rheumatoid factor, and also Lyme > Disease (which surprised me until she explained she had to rule it out even > though I haven’t seen a tick in 30 years). > I’m at the point where an internist thinks it’s a definite possibility, > though not a certainty, and has referred me to a rheumy, but the rheumy > doesn’t have any appointments until December. I told the receptionist that > was no good and to get me a referral to another rheumy. At least I’m not > totally off the mark since she wrote "possible scleroderma" right on the > referral. > So I’m still on hold until I see a rheumy and get the results of all the > tests. This could be a very long process.
Response:
No matter what else, it sounds like your PCP is really on the stick. Yeah, it can be a long process getting dx’ed. I had some of my symptoms for years before anybody ever thought of testing for scleroderma. AFAIK Lyme disease wasn’t one of the ones ruled out or even tested for, but diabetes, Parkinson’s Disease (which I thought I might have), and some others were ruled out. But they might have tested for Lyme Disease. I was being picked, pricked and poked so much, who’s to say (unless I get a gander at my medical records). Just hang in there. You’re doing all right! Nell
Response:
Martha, Don’t be discouraged. Since they treat the symptoms, not the disease, you are well on your way! It is good that your doctor is looking into (literally … hehe) your esophagus. If you are having big problems with it, there are several medications they most likely will try. I hope the first one is the "right" one for you! Amie is right. Be patient with the process. In the long run, the only thing a diagnosis really does for you is give you a word. The diagnosis doesn’t make you better. But the long, sometimes arduous initial foray will help in treatment options as your body is pieced and parsed with tests, etc. Your job is to stay aggressive and be cooperative, as long as you see forward, sensible direction. Met
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