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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 relicmom1

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Posted 08 February 2008 - 05:58 AM

Hello everyone! it's been awhile since I've checked in on everybody. I just wanted to know if anyone has gone to the Sclero Center at Johns Hopkins. I have my first appointment there this coming Monday. I am apprehensively looking forward to it. I will finally be seeing someone who knows about this blasted disease. My local rheumatologist has been such a disappointment to me lately. I thought they were doing pretty good ( they were the one that actually diagnosed me in the first place ) until I got a copy of my account for tax purposes and saw they had been using a totally incorrect diagnosis on me!! As most of you guys, I have alot of pain and it had gotten to the point that the only thing they did was ask which joint hurt the worst and gave me a hydrocortisone injection and sent me on my merry way. They did NO exam , blood work or xrays. they even STOPPED my Plaquenil!! They did this on the basis of ONE lab report where my ANA had decreased just a little. And , oh by the way, I guess that my insurance company requires a preauth for this, maybe they didn't want to do the "extra work" :angry: . I have felt worse being off of it. We have had CRAZY weather in our area, 80 degrees one day and 30 degrees the next and that is just playing the devil with me. I'm sure most of you are the same way, changes in the weather make me feel worse.
Sorry for the tangent <_< Just needed to vent I guess, no back to my original question, has anybody been to Johns Hopkins and how was it?
Peace :)
Barbara aka relicmom1

#2 RememberingToSmile

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Posted 08 February 2008 - 07:35 AM

I have been very pleased and comforted with their care over the past years. They are very busy and often I've had to wait a while beyond my appt time. - but I have never felt rushed through a visit. It is a complicated disease and I feel like they are taking the time to watch it from many angles. I trust them and that has been a great stress reliever for me.

Let us know how it goes.

-RTS

#3 relicmom1

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Posted 09 February 2008 - 05:16 AM

As a retired medical office employee, I TOTALLY know about the waiting thing, and I don't have a problem with that if, as you say, they take the time with me when it's my turn. I was in the medical field for 25 years as everything from receptionist, billing clerk, insurance clerk, referral clerk, filing clerk, secretary, medcial assistant, lab tech, procurement officer, office manager....ALL AT THE SAME TIME :blink: in primary practice at that!.I think we folks in the medical field make the worst paitents, we know enough to be dangerous :lol: I will definately let you guys know how it goes on Monday. I am seeing Dr. Laura Hummers , according to my paper work they sent me. They also said to allow at least 4 hours for my appointment. Thanks for the great support as always!
Peace :)
Barbara aka relicmom1

#4 rlbrussell

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Posted 09 February 2008 - 08:58 AM

I have been extremely satisfied with my experience at Hopkins. They are very thorough and the best care I have received throughout this process so far. I make the trip every six months with my husband.

Rosalinda
Rosa
Diffuse Sclero
dx Jan 2006

#5 ginny

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Posted 09 February 2008 - 06:16 PM

i am new to this forum and am very interested in going to the john hopkins sclerodoma center. where is it? what have they done for you? I am only 40 and my life is turned upside down I need help so bad. to make a long story short I have interstitial cystitis, gastroperesis, gastritis, esophogus motililty problems, rsd in the arm and I hurt so bad I am stiff like cement then my knees started filling with fluid and recently my legs started hurting really really bad they are waking me up at night. the other stuff has been a nightmare and scary but I have been battling that for awhile but the leg pain is new do you have any thoughts as to what could be causing this? it is getting worse and worse and scaring me. even if I had an idea as to what it could be would be great I cannot understand why this set in so fast and is getting worse so fast I guess I am really scared I am sorry to unload on you I guess I am desperate for help. if you could tell me where this is I would make an appointment as soon as possible. if you have time I would love to hear a little of what you have been through. thankyou so so much ginny and I look forward to hearing from you.

#6 RememberingToSmile

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Posted 10 February 2008 - 11:52 PM

Barbara,

How was your Hopkins visit?

-RTS

#7 relicmom1

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Posted 12 February 2008 - 10:00 AM

My visit to Hopkins was WONDERFUL!!!!!!!!!!!!! I saw Dr. Laura Hummers. She spent quite a bit of time with me and did a thorough exam (which my local rheumatologist hasn't done in a couple of years!!) She did the usual labwork and wants me to get some xrays and an echo (which is long overdue, but my local rheumatologist didn
t see the need for one! :angry: ) I go back in three months. I was very lucky and didn't have to wait long to be seen. I live about 170 miles from there ( it took about 3hrs 40mins) She said she would be glad to take over as my rheumatologist or I could continue here and just come there when I felt the need. I am going there from now on!!She said the reason that most rheumys don't know alot (if anything) about this disease is because it's so rare and they usually never see have anyone in their practice with it, whereas, all she sees is sceroderma patients. Just for some backgrouns, I have severe gastro involvement, joint issues, raynauds, dry mouth/eyes (I 've lost all of my teeth and have full dentures now) severe fatigue, depression, sleep apnea, peripheral neuropathy, extremity edema, chronic pain, some lung involvement (very minor right now :) )..Gee...that's it I think....
But anyways, I was totally pleased with Johns Hopkins!!!!!!!!
Peace :)
Barbara aka relicmom1