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My New Dr.


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6 replies to this topic

#1 Michelle2

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Posted 24 September 2007 - 06:07 AM

Hi Everyone~

I haven't been on lately, so I just catching up on what's been going on. I wanted to check in and let you know that I went for a 2nd opinion last week. MY OH MY, what a difference he made. I learned more from this one visit than I have in the past 4 years. My other dr kept me so in the dark :( needless to say, I won't be going back to her.

He checked me from head to toe asked me all sorts of questions. He took as long as "I" wanted. He answered all my ?'s in terms that I could understand. He ordered all sorts of test. I haven't a clue what they are, you guys might.

ANA profile
CCP
Alpolase
CPK
ANCA
RF-3 IGA, IGG
RF-3IGM

He's also having my hands, feet and legs X-Rayed for Calcium deposit...(I think is what he called it)

He also gave me a new prescription for Colchicine. He said it would help with the tightening of the skin on the back of my hands. (Has anyone heard of this medicine?) The skin on the back of my hands is sooooo tight that I can't snap my fingers, touch my thumb and little finger together. My knuckles are really dry and super red. You can barely see the bumps from my knuckles anymore. I try to stretch the skin on my hands just to give me more flexability. Does anyone have any idea's for me to try to make this more comfortable. I'm almost to the point of not being able to hold a pen and write and it's very difficult for me to open bottles with twist tops.

I read a little while back that people with Sclero have problems swallowing. Ever since I read that and my dr asked if I was having a problems swollowing, I swear I am beginning to wonder if I am. What (I think) am experiencing is like post nasel drip at the back of my throat. Is the beginning of having swallowing problems or am I just freaking myself out?

He also checked my organs and said from what he can tell I don't have any organ involvement that he can see. I just feel so much better knowing that I am in much better hands. I go back on Oct. 26. I'll keep you all posted on what they find out.

Oh, one more thing...is there anything testing wise that I should have done that he might have over looked?

Thanks for your help! ;)
Take care and stay warm,

Michelle

#2 janey

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Posted 24 September 2007 - 01:32 PM

Michelle,
I'm thrilled that you found a good doctor!!!!! It really makes all the difference in the world. Just knowing that he's trying to come up with a diagnosis is better than the doctor that just shrugs his shoulders and says "See in 2 months."

Your list of bloodwork is a mix of antibody and enzyme testing.
ANA (antibodies) - positive implies possible autoimmune disease
CCP (antibody) - tests for rheumatoid arthritis
Aldolase (enzyme) - tests for mixed connective tissue disease (this one is high for me)
CPK - muscle enzymes, test for polymyositis or dermatomyositis
ANCA - antibody for possible vasculitis disease (many times found with CTD)
RF-3 IGA, IGG - antibodies (high or low can be the cause of various diseases)
RF-3IGM ????

Not familiar with Colchicine, so hopefully someone else can help you there.
Other tests would probably be scheduled after a diagnosis. For example, with systemic scleroderma it's good to get baseline tests for the your lungs, heart and kidneys. A lot of medications can affect the liver so the liver enzymes (AST and ALT) might need to be checked periodically.

In reference to difficulty in swallowing - You would know if you were having problems. Do you have a hard time swallowing a bite of apple or bite of chicken? Do you have to wash everything down with water to get it go through? If not, then don't worry about it. Post nasal drip is very common and I have found that if you eat a lot of dairy products that you can have A LOT of it. I've actually eliminated dairy and it has almost eliminated the post nasal drip as well as a lot of my chronic coughing.

It sounds like you have a great doctor, so I would definitely keep the communication. Write down your questions and ask at your next visit. He sounds like the kind of doctor that will be happy to answer them.

Thanks for catching us up on how you're doing.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 nan

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Posted 24 September 2007 - 03:27 PM

Hi,
I think they also use Colchichine to treat gout, but I might not have that right. When I was first diagnosis with scleroderma. I had a chest x-ray, x-rays of my hands and elbows, pulmonary function tests, echocardiogram, and gastric emptying study done, plus 16 vials of blood taken and 4 urine samples. I have major GI issues. I have watermelon stomach( vessels in my stomach that bleed spontaneously associated with scleroderma, it's rare) and I have swallowing issues. I had two major GI bleeds and had to be transfused.
Take care and I am so glad that you found a good doctor.
Nan

#4 susie54

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Posted 24 September 2007 - 03:27 PM

Sounds like he is very thorough with all those tests and even if he didn't diagnose you, you still have a doctor who will treat what needs to be treated. Susie54

#5 Kamlesh

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Posted 24 September 2007 - 04:51 PM

Hi Michelle,

I take Colchicine for more than 2 years. Yes, it is primarily used for as suggested by Nan, but for Scleroderma patients, it helps in reducing calcium deposits from joints.

This helps reduce joint pain.
Kind regards,

Kamlesh


#6 Michelle2

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Posted 25 September 2007 - 03:18 AM

Thank you sooo much for this great information.

It's so nice to find people that show so much support.
Take care and stay warm,

Michelle

#7 Sweet

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Posted 25 September 2007 - 11:17 AM

Hi,

Oh I am always so happy to hear when someone gets a good doctor they are comfortable with and one that listens and will take you serious. Awesome!

Sounds like you are on the right track now. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)