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Back from the Scleroderma Specialist

8 posts in this topic

Hello everyone,


So yesterday was the big day for me, going to see the scleroderma specialist,who's the best here in Belgium; it is a university hospital so quite scary compared the one I usually go to. Ok, so I showed him my blood test with my ANA Positive and the centromere showing and the titer at 5120; he and his assistant had a very close look at me, asked me tons of questions and finally said, right, you have the antibodies of CREST but don't have the illness yet as you don't have any symptoms. I did say that I have been feeling tired since was son was born 22 years ago and started to have join pain from time to time and heartburn and what I though was dysphagia; he asked me what sort of heartburn I have, if it occurs at night, if I have it all the time, what tablets do I take and how many per day. I did tell him that some days I don't have heartburn, that it never happens at night, and that I take omeprazol tablets (don't know if it's the same in the US I also use zantac ) and told him that I take them time to time not everyday. He said that people with CREST syndrome and Scleroderma and very very bad heartburn and need tablets everyday, otherwise they have heartburn and the omeprazole 20 mg I'm taking is very low. About my eosophagus, I explained that it happened for the last 7 years, and it feels like a burn when the food gets into my stomach; they both asked if the food was like getting stuck in my eosophagus and I said no more like a pain when I feel the food going in my stomach, he then said it was not a symptom of CREST, that a lot of people have hiatal hernia which can give the same symptoms and about my Raynaud's syndrome as it has been the same again for over 15 years, just the top of one finger falling asleep and being white for a few minutes but never red or blue.


So, if I had not done the blood test for antibodies for my tendinitis I would not know that I have the centromere and he said not to worry that yes he believes the fingers test I'll be doing in a few months will maybe be positive, but not too worry cause it can stay the way I am now maybe for ever, so actually he said the same as what the first rhumatologist said which I went to.


But, because of course there is a but,and I'm so thankful to all of you I can put and say all my worries here, my husband keeps telling me that I'm always looking for the worse ( guess he might be right there ) so at the end of my consultation he asked me to have another blood test just to put in his records just in case I would have to come back to see him someday. I heard him asking his assistant to ask for ANA, ENA,... and then he said he would send a double to my doctor.


I left feeling better and then in the evening I was wondering, why that other blood test, even though he explained to me the reason why he was asking for it. My disturbed mind can't help thinking that he obviously saw how stressed I was and did not want to tell me the truth about the blood test and I'm thinking maybe they gonna find the SCL 70 in that one and that I have both the centromere and the SCL 70, did you have another blood test when you went to see the scleroderma specialist and did you have other things in your test? Is it possible that the SCL 70 would not be seen in the first one, when a doctor ask for antibodies are they showing straight away the centromere and the SCL 70... or do you need more tests for each result ?


Grrrr I'm annoyed cause I realize how difficult it is to explain my self in English language, that I love but don't handle it very well when it comes to talking about something like blood test, illness, and all that stuff, so sorry if it sounds a bit weird to you and thank you so much for helping me. I am wishing you all a very beautiful day, here it's now almost 11 am. My head nurse, called me this morning to find out if I was coming back to work on Monday ( with the tendonitis and my brainstorming about Scleroderma I've been off a month and a half! I'm a auxiliary nurse ( can't remenber if I have already told you.)


So usually I'm the one who listens and calms down stressed persons; if they ever knew that they have a hypochondriac person in front of them who totally freaks out right now and doesn't know how to get on with her life.


Give you all a big hug.

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Hi Cecelia,


That all sounds pretty positive. Hooray for good news! :emoticons-clap:


What they said about heartburn? Oh my, I'd definitely agree with that.


Let's see, the extra tests - don't you think they are more for a baseline than because the doctor is expecting anything else to show up? He'll have something to compare to and to see if there are any changes.


No, you hadn't mentioned you are an auxiliary nurse. You do know nurses make the worst patients, don't you? :lol: Now it is time for the nurse Cecelia to sit patient Cecelia down and calm her down. You can do it. Put your caring nurse voice on and let her know everything is going to be just fine.


Your English is fabulous and I'd say fluent, no worries there!


Have a great day and a nice weekend. It's 0505 here and I'm thinking about heading back to bed.


Best wishes,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Cecilia,


Thanks for letting us know about the visit to your Specialist; it sounds as if it's good news on the whole! :yes:


My consultants have often done the same blood tests over again like yours; they once took 3 phials of blood from my husband who doesn't actually have Scleroderma (or anything else!!) and was simply standing around at the hospital minding his own business! :lol:


I think we all tend to be a little bit of a hypochondriac, particularly with this unusual disease. I'm a bit of a worrier as well so I can understand your concerns; I think paranoia comes as part of the territory!! ;) :lol:

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Cecilia,


Thank you so much for giving us such a thorough account of your appointment. (By the way, your English is much better than MINE, so not to worry)!


As for feeling a hypochondriac...I'm sure many of us have been made to feel that way, TRUST me on that)! -_- That was how I felt for 4 years, prior to receiving my diagnoses of Scleroderma. The frustration is tremendous when feeling you are feeling unwell and your the symptoms described seem to further confound the doctors.


As Jeannie mentioned, the doctors will have a blood workup with which to compare further down the road,with any future blood analyses.


Jeannie also gave great advice as to having a good talk with yourself and working your magic to calm yourself.

In the meantime, here are {{{{Soft Hugs}}}} free for your use!

Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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A contrary view on esophageal symptoms-


I've had CREST symptoms for 34 years - first Raynaud's with some ulceration, then telangiectasias, occasional calcium deposits and hardening of the skin on the fingers. Later, secondary Sjogren's and pulmonary hypertension.


I've NEVER had heartburn in my life, nor any other sort of esophageal symptoms (knock on wood...). "CRST" would probably be a more correct diagnosis.


Sooooo - this disease throws another curve. I wouldn't meet your doctor's requirements.


To further complicate things, my father had CREST and he had trouble with heartburn.



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Hi Craig,


I think that what the doctor meant, was that my problem with my eosophagus did not sound to him like the one he can see in CREST syndrome when people do have that problem. He said after asking me lots of questions, and taking a good look at my skin, he could not see anything that showed Scleroderma but I do have the antibodies centromere but even the Raynaud's that I've been having for more than 15 years hasn't been worse as the end of a finger getting waxy for a few minutes so he said, that was common even for lots of people who have not got Raynaud's syndrome.


I'll have the nailfold capillaroscopy for my fingers in April and should know more by then :emoticon-dont-know: I must say I'm a real hypochondriac, that I'm really scared, cause even though I don't have the skin problems yet, I do feel very tired, do have pains in different places,and now the antibodies but I've been talking to lots of people who seem to be doing fine and it helps me.


Wishing you a nice day :)

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