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The "New Doctor" Blues

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#1 Fictionite


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Posted 18 March 2008 - 09:40 AM

Hi, All. After waiting three months to see a new rheumatologist and getting my hopes up for finally getting proper medical treatment, I'm right back to square one. I have a lot of experience with "square one" - doesn't make it any easier, though.

Here's the short backstory: I recently moved across the country and had to leave behind the excellent sclero specialist in Kansas City after taking months to find and see him. I now live among my entire extended family and have a good, personal support system; however, I reside in a small town with limited medical resourses - especially the kind I desperately need. The closest rheumatologists are 4-5 hours away, but I do have family to drive me.

With four different rheumatologists (two of them considered "experts") confirming sclero and Raynaud's last year, I was shocked when my new doctor in Albuquerque told me that he could not make a diagnosis of scleroderma. In fact, he wants to start all over and isn't interested in my medical records - didn't even want to look at them. The new doctor is convinced that all of my major symptoms are a result from acid reflux (chronic pneumonia, joint pain, fatigue??) I had pneumonia three times last year, and he is sure that acid reflux caused it. When I told him that I didn't start having stomach pain, constant bubbling in the back of my throat or swallowing problems until about four weeks ago, he said that I could have had acid reflux for a year or more and never known it. He explained that the reflux could be dropping into my lungs causing inflammation. OK, so then why don't I have "pneumonia" right now? Currently, I don't feel sick or have breathing problems (thankfully!) - just overwhelming fatigue, joint pain and throat pain withreflux.

Has anyone ever been told anything like this? Is it possible to have chronic acid reflux to the point that it's falling into your lungs and never even experience the slightest symptoms of heartburn?

Of course, I'm in the process of trying to find another new doctor. I selected this particular doctor beccause he was the one who could see me the soonest. There are only so many rheumatologists within driving distance from me. Most of the others that I contacted could not see a new patient until late summer to September, and this was back in mid-January! I will start working on finding a new doctor after I take a few days to calm down.

Thanks for listening. ~LeAnn

#2 Sweet


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Posted 18 March 2008 - 09:45 AM

Oh goodness, what a HUGE disappointment. I'm so sorry. Janey is in New Mexico I think. I wonder if she could point you in the right direction for a good doctor??
Warm and gentle hugs,

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#3 janey


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Posted 18 March 2008 - 10:15 AM

I am so sorry this happened! I wish you had been able to get in to see my rheumatologist or the other one in that department. I think you would have had a better response. UGH! Did you check on any of the one's in Las Cruces? It's hard to believe that a doctor didn't want to see your medical records. Yesterday I met with a new cardiologist and she was thrilled when I handed her echo, pft and pacemaker reports for the past 2 years. She read through all of them right in front of me.

Good question about the reflux getting into your lungs. Here's some information I retrieved from the ISN Aspiration Pneumonia page. "Aspiration pneumonia occurs when vomitus or reflux gets into the lungs, causing an often deadly form of pneumonia. Anyone (with or without scleroderma) can get aspiration pneumonia...Symptoms include cough, coughing up sputum, and sometimes fever. The pneumonia will usually show up on chest x-ray, but a sputum culture will show that the pneumonia isn't caused by bacteria. Aspiration pneumonia should be suspected if a scleroderma patient has recurrent pneumonia. An estimated 30-50% of cases lead to death. However, mild cases may cause no symptoms at all."

Hey girl - if you're not comfortable with this doctor, then you absolutely need to find another one. That's why I'm breaking in a new cardiologist. My last one admitted at my last appointment that he didn't know what else to do for me. Let me know if I can help.

Big Hugs to you,
Janey Willis
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#4 truman


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Posted 18 March 2008 - 11:45 AM

Why don't you ask your former Sclero doctor in Kansas to recommend in the closest vicinity possible?

It is what it is...........

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Posted 18 March 2008 - 12:54 PM

I'm so sorry to hear about this. I hope you can soon find a better dr. You're in my thoughts.

#6 jefa


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Posted 18 March 2008 - 01:13 PM

I agree with Janey that you need to find doctors with whom you are comfortable. Tru makes a good suggestion that you ask your old doctors for a reference. I cannot imagine anyone who wouldn't want to see previous records. I don't agree with his theories, either.
Warm wishes,

Carrie Maddoux
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#7 bookworm


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Posted 18 March 2008 - 08:47 PM

That doctor sounds like a loser! My rheumatologist had a waiting list of about a year when I first tried to see her. Fortunately, I wasn't having any particular troubles at the time, but I thought I needed to find a good rheumatologist and this one was highly recommended to me. Anyway, it turned out I didn't have to wait long at all because she had a cancellation.
So, my advice is put your name on a waiting list of someone good -- maybe put your name on a couple of waiting lists! That way, when an opening comes up, you can visiit that doctor and check him or her out. If you don't click, you'll have your name on that other waiting list and you won't have to start at square one again.
Good luck!

Mary in Texas

#8 Fictionite


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Posted 20 March 2008 - 07:02 AM

Thanks so much for your responses. I have managed to get myself settled down a bit, and since I'm relatively well at the moment, my situation doesn't seem quite as urgent.

An interesting coincidence... My former doctor did recommend someone for me who just happens to be Janey's doctor in Albuquerque, but when I called to make an appointment, I was told that he had retired last year. That one is still a mystery, but I was scheduled with the "questionable" doctor in the same office. I was also wary about seeing the doctor who had the first available appointment, but my insurance runs out at the end of this month, so I didn't have the option of waiting for a different doctor.

Meanwhile, I saw my primary care physician, who is another new doctor for me (but a very good one), and told her about my experience. It turns out that she knows this rheumatologist and says that he is a good doctor, but tends to be on the arrogant side. If I'm ever able to get insurance again, she said she will make some calls to get a rheumatology appointment for me in Lubbock, TX. This is actually closer to me by half the distance. She gave me a nice steroid shot in the hip, and I'm doing much better today as far as the joint pain goes. I also have an endoscopy & colonoscopy scheduled for Monday, so maybe I'll get some help/meds for the GERD and IBS before the 31st.

Now, I just wait on my social security hearing and hope that it gets approved based on the records/statements from the other doctors. And, I can only hope that no new symptoms or pneumonia-like issues flare up before I can "afford" to see any kind of doctor.

Thanks again for your encouraging replies. ~LeAnn

P.S. Janey, I did try the doctors in Las Cruces, but they were the ones who couldn't see me until September. And, thanks for the pneumonia info. It's quite possible that my last round of it was the aspiration pneumonia. The doctor in Albuquerque did order chest X-rays and enough bloodwork to satisfy a vampire. Hopefully, the results will be forwarded to my local primary care physician. When I told her that it might be my last appointment for a while, she said that she would continue to see me whether I have insurance or not and whether I can pay or not. It's not all bad, see?