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No tests..Good or bad?


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#1 michele chere

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Posted 29 May 2008 - 10:02 AM

I was diagnosed with CREST in 2003. Since then the skin involvement has progressed to cover most of my body. I have severe reflux and am experiencing shortness of breath. Ever since I was diagnosed I have been through the multiple annual tests (ECG, CAT scans, chest xrays and PFT's). I now see a new rheumatologist because of new insurance. I have not had any tests other than bloodwork for 2 1/2 years. I am concerned especially since the shortness of breath is a fairly new symptom and the reflux has been so bad. When I ask the rheumatologist about the shortness of breath he says "if it continues, see a cardiologist." This rheumatologist doesn't have any of my previous records. Wouldn't the rheumatologist be the one to check this out? My previous rheumatologists have been so adamant about the annual testing and this one appears to not even consider it. Should I be concerned, or should I just wait til things worsen?
Thank you to all of you for your support!
Hugs,
Michele Chere

#2 Snowbird

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Posted 29 May 2008 - 12:54 PM

Hi Michele

My suggestion would be to definitely go to another Rheumatologist asap, preferably one that specializes in Scleroderma if you can. If you feel he does not have your best interest at heart, then he likely does not. I personally would never wait for things to get worse, definitely do not do that. The earlier things are caught, the better, so that the doctors can give you the proper care for any illness. Normally someone here on the network will be able to give you a list of names for specialists in your area (you'll need to let them know your area for them to help you with that if you didn't already). I know for me, my Rheumatologist would be referring me to the cardiologist or whatever specialist I needed (I'm in Canada). I'm not sure where you are from so I don't know how your medical system works? I'm sure others will chime in shortly to help out too.
Sending good wishes your way!

#3 jefa

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Posted 29 May 2008 - 09:47 PM

I agree with Snowbird, Michele. You should certainly be under the care of a scleroderma specialist or at least a rheumatologist with a more proactive way of looking at things. Here is a link to specialists around the world. Click on the place nearest you for more details.

Scleroderma Specialists
Warm wishes,
Jefa

Carrie Maddoux
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#4 Shelley Ensz

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Posted 30 May 2008 - 01:24 AM

Hi Michele,

Good or bad?

Definitely bad!

Time for a new doctor, and most preferably, a scleroderma expert (see the link Jefa sent).
Warm Hugs,

Shelley Ensz
Founder and President
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The most important thing in the world to know about scleroderma is sclero.org.

#5 Peggy

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Posted 30 May 2008 - 06:03 AM

I agree with everyone!. You should be seeing a lung doctor to see if you now possibly have lung involvement. I know my rheumatologist doctor has me see the lung and heart doctor at least every 6 months but sometimes it's every quarter. I see her every 4 months and then she determines which specialist I need to see depending on how things are going. I agree that you need to see a rheumatologist doctor that specializes in sclero so they are up-to-date on what needs to be done. With all the meds that are available you would hate to not be on one if you need to be depending on what is going on with you medically. I don't mean to scare you but I know that prevention and early detection in this disease is only helpful.

Warm hugs,

Peggy

#6 michele chere

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Posted 30 May 2008 - 01:50 PM

Hi Everyone! I want to thank all of you for your input. I will definetely seek out a new rheumatologist. I checked the specialist list and the closest one to me is about 4 hours away. I will absolutely be calling them on Monday. I felt like my dr should have been more proactive like my previous doctors were, but I thought maybe there's just not enough symptoms to have the tests done? Anyway, I'll be giving my insurance company a call and get fixed up with a new rheumatologist and will see about scheduling to see a specialist in Charleston.
Thanks again!
Happy thoughts,
Michele Chere

#7 Sweet

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Posted 01 June 2008 - 01:22 PM

Hi Michele,



doctors can be so different from one another. My primary care physician wants to run tests and plenty of them each and every time I see him. I usually scale back what he wants to do. My rheumatologist on the other hand only takes tests of something new or weird of happening and I've gone 4 years at one point without any testing.



I think you need to go with your gut. If this isn't sitting well with you speak up or seek another doctor.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 debonair susie

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Posted 05 June 2008 - 09:01 AM

Hi Michele,

The feedback you have gotten back is great and your instincts are right-on.
I'm glad you are going to move forward and check out another dr... nothing
worse than the feeling of neglect from a dr. Unfortunately, most of us have
had that happen and had to go through the same as you now.

I hope that you have great luck withyour upcoming dr visit... when you get set up1

Hugs,
Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#9 janey

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Posted 05 June 2008 - 10:17 AM

Michele Chere,
Ditto on everything that everyone has said! Were you able to get an appointment with the sclero specialist? Hopefully the insurance will support it and you'll get the care you need.

Please keep us informed.

Big Hugs,
Janey Willis
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#10 michele chere

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Posted 08 June 2008 - 02:33 PM

Hi All! I checked into seeing a sclero specialist in Charleston. I have to have a referral from my primary dr. Also my insurance will not pay to see the specialist since he is not in my network. Ugh! I've been calling for a week to get in to see another rheumatologist ( one I had seen before my insurance changed) and cannot get anyone to schedule an appointment until they check with the dr! I'm so frustrated with all of this! I made an appt with my current rheumatologist for this Tues. I'm going to question him about the lack of testing and try to get him to be a little more proactive...wish me luck!In the mean time this intense itching and reflux are getting the best of me! I'm sending all of you happy thoughts and gentle hugs.
Michele Chere

#11 smac0719

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Posted 09 June 2008 - 01:55 AM

I wish you were able to see the specialist in Charleston. He is the one that I see and I think he's great. Have you checked to see if your insurance will give you approval to see him due to your condition and his specialty? Some insurance companies will make exceptions when there isn't a specialist in the network, in the area who can treat you for your condition.
I may have Scleroderma, but Scleroderma doesn't have me!

#12 debonair susie

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Posted 09 June 2008 - 06:42 AM

Hi Michele,

Since you must have a referral from your primary dr... call his office, leave the message, asking for the referral. If you know which dr you CAN see within the network, let them know. Otherwise, call your insurance company for the name(s) of said doctors in your network.

Please remember that you may not hear back until the end of the day you call, or even the following day. However, if you DON'T hear back in a couple of days form your initial call, call the dr's office again.

Good luck and let us know?

Hugs,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#13 michele chere

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Posted 10 June 2008 - 05:52 AM

I saw my rheumatologist today. I described the itching and the shortness of breath. He pinched my skin in a few places, looked at a few places and listened to my heart and lungs. He said he is referring me to Duke University. I was shocked, to say the least. I thought he may order bloodwork or other tests. He said the scleroderma is definetly getting worse and he would recommend that I see the specialists. He called them while I was there and we are waiting to hear back from them. I don't know how those clinical trials work or anything. Is anyone in a trial now at Duke, or has anyone done one recently? I'm glad he is finally becoming proactive in my care, but it scares me to think I'm bad enough to be considered for a big step like a clinical trial.I know, denial denial denial. I've been able to force myself to function for so long, I just thought I could outrun this whole scleroderma thing. Well, it caught up with me, so it's on to the next step. He said if I couldn't get into Duke he would start me on Methotrexate. I've heard unpleasant things about that too.Could anyone give me any feedback on their experience with the Methotrexate? Thanks to all of you for your input and support.
Sending happy thoughts to all.
Michele