Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Update On Trip To John Hopkins Today


  • Please log in to reply
9 replies to this topic

#1 memeto2

memeto2

    Senior Bronze Member

  • Members
  • PipPipPip
  • 36 posts

Posted 07 December 2006 - 01:29 PM

hello,well I had a good trip tojohn hopkins today,dr.wigley is a super nice guy.he said that I have limited scleroderma not diffuse like I was told by a local dr.but he does suspect that I have lupus also,due to me having 2 blood clots in my leg within a years time.so I told him I had a blood test that r/o lupus,he says that you dont check for lupus by a blood test.can anyone tell me how they check for lupus if it isnt by blood???well anyway I have to have some test done and go back to him in february,he said he would be able to tell me more than.i feel pretty good about my visit with him.he also gave me a prescription to take to stop smoking,he said that I have to stop and I know that,so im really gonna try hard to quit.well hope everyone is staying warm ,boy is it COLD!!!!take care memeto2

#2 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 07 December 2006 - 01:45 PM

Hello!

Glad your trip went well and it's good news you don't have diffuse Sclero, but limited. Sorry to hear abot the lupus though. I too have that. An ANA does come into play for diagnosing Lupus, but there are other criteria that help the doctor make the diagnosis.

I'm going to give you a link to review. I hope it helps!!

http://www.sclero.or...s.html#overview

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Heidi

Heidi

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 573 posts

Posted 07 December 2006 - 02:19 PM

Hi!

Thanks for letting us know how your doctor visit went. Overall, it sounds like you had a good visit with Dr, Wigley. It is so important to find a doctor who you feel listens to you and understands what is going on with you and who is willing to work with you to try to help alleviate your symptoms. Please do keep us posted as you get your test results back.....and good luck with quitting the smoking!

Warm wishes,
Heidi

#4 Claudia-DR

Claudia-DR

    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:The Caribbean

Posted 08 December 2006 - 02:30 AM

Hello Melissa!

I'm glad you had a good appointment at Hopkins. I agree with the others that it's a relief that you have limited scleroderma.

Yes, by all means do your best to stop smoking. Raynaud's and smoking are not good partners.

About the lupus, I guess you'll just have to wait and see until your next appointment.

I do hope you feel better now!

Best,

Claudia

#5 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 08 December 2006 - 02:37 AM

Hi,
It sounds like it was a great visit! I won't nag you but the importance of quitting smoking... well I don't have to tell you. Your body is under enough stress and confusion with disease. So good luck and take one day at a time.


Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#6 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 08 December 2006 - 06:20 AM

memeto2, Glad to hear that some progress is being made. Smoking was the hardest thing in my life that I had to give up. I spent years trying to quit via different methods. I have been smoke free for 2 years now. It is wonderful not to have that appendage clinging to me. One secret that took me years to figure out. You can't cheat by just having one. Each cheat you are starting back at square one. You are giving up on yourself and aren't even realizing it. It only bothers you for the few seconds you are near one. Then the urge will go away and you make it thru another moment. Congratulate yourself and give yourself a pat. Save all that money spent on smokes to buy things you have always wanted. First mine was spent on clothes. Then on china and things around the house. Now, it gets me to Florida to spend extra time with family members. Good LUCK. I never thought I could be happy being a non-smoker. I AM really really HAPPY. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#7 memeto2

memeto2

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 36 posts

Posted 08 December 2006 - 10:57 AM

THANK YOU SO MUCH SHERYL THAT REALLY DID GIVE ME SOME STRENGTH TO STOP.IT IS SOOOOO HARD BUT I WILL TRY AND ONE DAY I KNOW I AM GONNA BE A NONSMOKER...THANKS FOR THE ENCOURAGEMENT!!!!

#8 bookworm

bookworm

    Silver Member

  • Members
  • PipPipPipPip
  • 292 posts
  • Location:Texas

Posted 08 December 2006 - 09:04 PM

Hi, memeto2,

I just wanted to comment on the smoking. I smoked for 40 years before finally kicking the habit 3 years and 7 months ago! I agree with Sheryl! I am so happy to be a non-smoker!! I never believed I could do it.

Sheryl is right about not taking even one p uff. It is the same as starting all over, because nicotine is an addiction. If it has begun to get out of your system and you have another cigarette, you have just put the substance back in your system, so you go through physical withdrawal symptoms all over again.

What helped me the most, and continues to help me stay smoke free is an online quit smoking group. I don't believe I would have done it without my group!

I have now become one of the group leaders and I really believe in the program. It's free. It is the COPD program that is listed on the sclero site at Pulmonary Resources: Quit Smoking.

Mary in Texas


#9 nan

nan

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 10 December 2006 - 02:59 PM

Hi,
How long did it take you to get an appointment with Dr. Wigley?
I called the main number and the person there is trying to set up an appointment. I am thinking I should call directly to Dr. Wigley's office. Could you let me know how you did it?
Thanks,
Nan

#10 Gidget

Gidget

    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 11 December 2006 - 02:42 AM

I have an appointment with Dr. Wigley in January and it has probably been about a 2+ month wait. The problem they say is that he only sees new patients on Thursdays. Good luck. Gidget.