Posted 08 July 2009 - 02:00 PM
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!
Posted 08 July 2009 - 03:24 PM
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.
Posted 08 July 2009 - 04:47 PM
Good luck and best wishes,
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Posted 08 July 2009 - 05:13 PM
Hang in there and has others have said these things take time.
Posted 08 July 2009 - 05:55 PM
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.
Posted 09 July 2009 - 04:45 AM
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.
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Posted 09 July 2009 - 05:08 AM
Barbara aka relicmom1
Posted 09 July 2009 - 11:35 AM
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?
Posted 10 July 2009 - 09:08 AM
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.
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Posted 12 July 2009 - 07:08 AM
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.