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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Jene29

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Posted 08 July 2009 - 02:00 PM

I had my first appointment today with a rheumotologist. I can't get in to Johns Hopkins until September so I asked for an appointment elsewhere for now just to get some advice. Well, this office was extremely out dated! I mean, the secretary was using a typewriter and they wrote everything down on a piece of paper. The nurse was about 70 years old and the doctor looked to be in his 60's. I'm not saying they don't know what they are talking about, but I was a bit weary when I went in.

The doctor was good and he did work with Johns Hopkins and has experience with patients who have Scleroderma. He has one in his practice now too. Anyway. We talked, he looked over my labs from my motility test and he came to the conclusion that he doesn't think I have Sclero. I don't have any other symptoms besides the dysmotility of the esophagus. He said there are a couple of reasons the esophagus does not work properly and Sclero is one of them. He emphasized the doctor mentioned I needed further evaluation due to POSSIBLE scleroderma. He didn't rule it out completely yet, but he said he doesn't think I need to worry that it is Sclero.

I am still going for the second opinion. I did get blood work done to check my ANA, but he said blood work does not always make the diagnosis. Basically he told me to hang tight and if I start showing more symptoms to come back (he wants to follow up with me in 3 months). Should I accept this? He checked my joints (only my wrists have been bothering me off an on) and he said they were okay and that I was probably having some pain due to the physical demands of my job. I think I can feel better if my blood work comes back normal. I just don't understand what else would be causing my esophagus to malfunction if the GI doctor seemed to rule everything else out. Any suggestions?

Thank you so much!

Jen

#2 Sweet

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Posted 08 July 2009 - 03:24 PM

Hi Jen,

It can all be so confusing. No, I wouldn't accept it. I would keep your appointment for Johns Hopkins and get the second opinion. And if you still are not comfortable, get a third opinion!

Looking forward to hearing what they say in September.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Jeannie McClelland

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Posted 08 July 2009 - 04:47 PM

I'm with Sweet - I'd keep that appointment at Johns Hopkins. It never hurts to have a second opinion. I guess when so many rheumatologists never see scleroderma at all, to find one who has is kinda-sorta lucky, but if it were me, I'd really rather see a doctor who specializes in it at a medical center with an active scleroderma. ;)



Good luck and best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#4 betty32506

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Posted 08 July 2009 - 05:13 PM

Welcome. I am probably one of the least knowledgeable one on here but will throw in an off base comment. My husband had severe problems with his throat. Frequently when he tried to eat and sometime without eating his throat would constrict and he said it felt like someone was choking him. He would throw up and had many misc other problems. They did many test, don't know what all. One doctor decided it was reflux even if the tests didn't show it. He started on Prilosec and it was not long before there was real improvement. There is a non prescription form of this. Since Pepsid had a positive effect this might be something for you to consider.
Hang in there and has others have said these things take time.
Betty

#5 Kamlesh

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Posted 08 July 2009 - 05:55 PM

Hi Jen,
My symptoms for Scleroderma started in 1998. I had tightening of skin on face, hand, and chest. My primary care referred me to Neurologist and went through tests for MS, Lupus, etc
By the time, six years later when I was diagnosed; there was significant damage to my esophagus and lungs.
My GI specialist was first one to suggest Scleroderma and finally diagnosed in Northwestern University in Chicago. I agree with suggestions by Pamela and Jeannie for second opinion.
I was able to improve function of esophagus by going through partial fundoplication surgery.
Kind regards,

Kamlesh


#6 Amanda Thorpe

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Posted 09 July 2009 - 04:45 AM

Hello Jen

I'm with getting a 2nd opinion particularly as it will be from a doctor well versed in sclero. The doctor that you saw at least agreed to monitor you and see you again in 3 months which is actually quite good, however, you have the opportunity of a 2nd opinion and you should most defenitely get one. At least you'll have more confidence in the outcome whatever it may be.

Take care.
Amanda Thorpe
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#7 relicmom1

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Posted 09 July 2009 - 05:08 AM

Jen, I agree with the others, KEEP your appointment at Johns Hopkins. I go there and the doctors and staff are WONDERFUL. I always get a complete going over and they NEVER rush me or make me feel stupid for asking questions. I have to travel about 300 miles one way to get there, but it WELL WORTH IT to see a doctor that is well versed in this disease. As I'm sure you have learned from us, this disease can be very differrent from person to person. Good luck and keep us informed :)
Peace :)
Barbara aka relicmom1

#8 Snowbird

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Posted 09 July 2009 - 11:35 AM

Hi Jen

I'm in on this too...always get another opinion if you feel any hesitation....and as Sweet said, keep going if that one doesn't satisfy you either. Amanda has a great point too....if he's willing to monitor you, it's worth it should any new symptoms pop up, nothing lost by keeping him in your pocket? Try to remember that any of these autoimmune diseases can take what seems to be forever to diagnose sometimes because they are usually rare and the symptoms present themselves differently in many people. ANA can't diagnose scleroderma fully because you need other clinical symptoms present to do that along with the bloodwork (like the ANA, plus 2 symptoms in the CREST for Limited Scleroderma). Sometimes, you can show symptoms and not show anything in your bloodwork too....that's why it's so hard to pin things down. Did you bloodwork reveal anything at all?
Sending good wishes your way!

#9 Shelley Ensz

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Posted 10 July 2009 - 09:08 AM

Hi Jene,

I agree you should keep the appointment with Johns Hopkins. I'd just caution that it should not be in hopes of a scleroderma diagnoses in the absence of any other symptoms. Perhaps they could even rule scleroderma out as a cause or identify something else that it causing it.

In any event, it's not going to hurt to get an expert opinion and, if it is scleroderma, they might pick up on other symptoms that your medical team has missed.
Warm Hugs,

Shelley Ensz
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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.

#10 jillatk

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Posted 12 July 2009 - 07:08 AM

Jen,

Persistence is the key with this or any other autoimmune disease. You are not crazy, you just haven't found someone who is willing to take the time and patience to pick through all the data and make sense of it. I find it helpful to go in with a list of things I am concerned about/what to know about and I keep at it until the doctor gives me some kind of a response, even if it is "I don't know". I also always take someone else with me because 4 ears are better than 2.

Good luck and keep plugging along. It does take forever to get in to see the specialists we need to see.

Jill