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lotokids9

Finally a diagnosis

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So Friday I went to see the rheumatologist I don't like. The one that told me it was just a virus and to take the celebrex and go to my primary care doctor, he didn't need to see me anymore because I dont' have anything rheumatic going on. I had made an appointment with a new rheumatologist but we were still two months away from that appointment so I decided since I am having more symptoms and additional blood work that I would go see what he had to say again. So my latest symptoms are shortness of breath, pain in chest and back, diarrhea, continued joint pain even though on the Celebrex 2’s a day for months and months now.

 

My blood work...

 

3/4/2008

ESR 22 H

Rheumatoid Factor 20 H

ANA Choice Positive H

 

4/7/2008

Sed Rate 25 H

Rheumatoid Factor 19.1 H

Antistreptolysis 349.6 H

Parvovirus 4.8 H

 

8/7/2008

ESR 32 H

Rheumatoid Factor 20 H

ANA Choice Positive H

SCL-70 AB 3.3 H

SCL-70 antibody is strongly associated with scleroderma.

 

The doctor told me you don’t need to be on anything else because your joints are not swollen and that is the only time you need to worry about the disease progressing is when they are swollen. Then I asked him, isn’t there anything we can do, I feel horrible if I do ANYTHING. The doctor said, well we can try some Plaquenil. Take one two times a day and I will see you in a month. He ran a few more blood tests and sent me on my way.

 

On my drive home I got a call from the other rheumatologist’s office saying they could get me in Monday, it was currently Friday. So I waited all weekend hoping this new doctor would be what I need.

 

Yesterday I went to see the new rheumatologist. She was fabulous! I am just so thrilled to finally have someone that seemed to do something and listen. She examined me and went over the blood work. She said based on your exam and swelling in your joints you certainly have Rheumatoid Arthritis. You might easily have Fibromyalgia also, that often comes with all of this but I am just thinking out loud on this I am not ready to write it down as a diagnosis yet. With the Scleroderma you have some symptoms but not others so I would like to wait on that one also. Let’s do some more blood work and do a CT to look at your lungs I am worried about your shortness of breath. What have doctors said about your murmur? I said, murmur what murmur? She said nobody has ever said you have a murmur. I said no, she said you have a pretty significant one, lets to an echo. X-ray of your hands and feet and get you started on methotrexate and I will see you in a month and we will see how your are doing. So I am planning the Methotrexate for Saturday night to give me Sunday if I feel yucky. That is the only day I can give. So I am starting out for the first two weeks on 4 pills and then after that go to 6. So I started my folic acid yesterday. I have my CT and Echo today! I am just so thrilled to find a good rheumatologist. What a drastic difference between the two rheumatologists. So anyone in Utah, I have a great doctor if you’re not happy with the one you’ve got. She is worth the wait!

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Lotokids,

I'm SO glad that you were able to get in to see the new rheumatologist! She sounds fabulous. I hate that you have to hear any type of diagnosis, but at least you have a doctor that just doesn't send you home with a pain pill without listening to anything you say as well as not listen to your heart. That's just crazy.

 

Sounds like your new doctor is running that standard, necessary tests to see if anything is going on and to establish a baseline. All the test you mentioned are non-invasive so nothing to stress about. I hope the methotrexate works for you. Sometimes it bothers the stomach so be sure to take them with meals. I was on the pills for a while and my rheumatologist had me divide the number of pills that I took at one time. I was taking 6 so I took 3 with breakfast and the other 3 at lunch. I didn't have have any problems.

 

Let us know how you do and your tests results. Thanks so much for the update!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Welcome to Sclero Forums, Lotokids! And, you sure do have a lot of them. ;)

 

I'm delighted you found a new, and better, rheumatologist, and that they have diagnosed you. I think most of us have experienced drastic differences between doctors, like you have. Keep us posted on how you're doing, and how your tests turn out.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Lotokids

 

I sure am glad you finally found a good rheumatologist and that you didn't give up!! It sounds like she is great and will get to the bottom of things for you....that in itself must be a relief for you no matter what. There's nothing worse than having a doctor that doesn't bother with the patient, so glad you're done with that one too! Good luck on your tests and I hope you keep us posted!


Sending good wishes your way!

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Hello Lotokids

 

What a difference between doctors! I am glad you are making progress with treatment.

 

I found out about a murmur by reading my copy of the rheumatologists letter to my general practitioner and was somewhat surprised by it. As it turns out the echo confirmed there is NOT a murmur but I sound like I have one. Weird.

 

Keep us posted and take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello lotokids and thank you for the update. I too am glad that you found a rhuemo that listened and reacted. It's a great feeling isn't it? I have been on methotrexate for almost 2 years. I do not believe I have had any side affects from it although my hair recently thinned out on top and that is one of the side affects. I have been under some unexpected stress lately so it could be a result of that too. It appears to have ceased so I'm leaning more towards it being stress related.

 

I wias put on Plaquenil at the same time as the metho and I did feel much better. I hope the same happens for you.


I may have Scleroderma, but Scleroderma doesn't have me!

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Yes lotokids in finding a rheumatologist you can actually talk with!! Great job on you part. I am sorry about what they are finding but it is a relief when things don't feel so great.

 

The plaquenil and methotrexate have helped me tremendously, especially with skin problems and fatigue. The joint pain is still pretty tough. If the methotrexate pills bother your stomach there is also the injectable form which you can give to yourself once a week. It is easy and doesn't cost much. I have been giving myself the injection for about 7 years. I don't have lotokids though but my extended grandkids are here almost every weekend , should that be a future concern. I keep everything out of reach.

 

Take care and will keep you in my thoughts.

 

Judy


A happy heart is good medicine.

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My doctor did talk to me about the injectables because she is worried with the constant diarrhea I have been having that I will not absorb the medication so she said we may switch to them for that reason also.

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lotokids,

 

The pills really bothered my reflux but so does everything else including food. If it doesn't taste like paper I can't eat it.

 

Judy


A happy heart is good medicine.

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