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A Great Doctor's Visit

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Thanks to all for your notes of encouragement! I just got back from a wonderful rheumatologist's visit. He was so kind and compassionate today. He still thinks going to Hopkins is a great idea. I mentioned to him that my dermatologist said that my nailbeds have been damaged by Raynaud's. He looked and said you didn't have that before on all of your fingers. I told him that he was right. It was on my pinkie on my left hand in July, but now it has spread. He said that that can be indicative of autoimmune disease and that he definitely wants me to stay on Plaquenil. I asked did it have something to do with nailfold capillary and he said that it did. He asked if I wanted medicine for the Raynaud's. but then said that he really didn't want to do that because my blood pressure is so low. Today it was 85 over , he couldn't get a read on bottom number, he said that it went down to 20. Maybe that's why I am dizzy. I also told him about fainting the morning after my flu and pneumonia vaccines. He thinks that was my autoimmune system going nuts. He wants Hopkins to let him know if he should be treating this more aggressively: Such as getting echocardiogram and pulmonary function test. He is leaning towards Scleroderma, but feels that mine won't be so bad. He said that usually if it hasn't gotten a lot of involvement in the first few years it's ok. What are your thoughts on that? I know the most common problems are pulmonary fibrosis and renal involvement. Thanks for listening and have a super day! Oh, he redid serologies today and said to come back in 6 months. Now I am just waiting on Hopkins.

Take Care everybody!


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Hi Nan,


It sounds like you had a great doctor's visit and you have a rheumatologist who is willing to listen and work with you and not against you! That is half the battle. I am glad to hear he is in support of you going to John's Hopkins for more definitive diagnosis and for a treatment plan. I hope you hear from them soon. Please do keep us posted.


Warm wishes,


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Hey Nan,

It is great when you can have a good Dr.s visit once in a while...its even nice to share a fellow forum members good Dr. visit! I will be curious to hear how your serology results come back and what the Dr. thinks.


In the meantime, try to stay warm...and thanks for the good news.




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i think that is great he is refering you to john hopkins.i was there yesterday for the first time and it was great.i know you will get a definate diagnosis there.good luck and I hope they call you soon..memeto2(MELISSA)

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Thanks for the update! It's good to hear that you have such a supportive rheumatologist. Going to John Hopkins to get an opinion from people more specialized is a great idea and it's good that your rheumatologist is behind you on this. It's an indication that he'll be there in the future to help out.


It's hard to comment on your question about "a lot of involvement in the first few years" because every one is so different with these crazy autoimmune diseases. So it's best to just wait and see what JH has to say. Please keep us posted.


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)

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