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debz

An update from me....

21 posts in this topic

Hello everyone,

 

I haven't been diagnosed with anything apart from sjogren's and that it is secondary to 'something'. My specialist keeps telling me I am evolving.

I saw a gastroenterologist this afternoon, because I had been having break through reflux and feeling as though I had a lump in my throat along with nausea.

He was really nice and asked me alot of questions (thanks Sheryl, I was prepared) and was very interested in my hands and my raynaud's. He asked me if my specialist had mentioned 'scleroderma' me before. I said he had mentioned it only in passing, along with mixed connective tissue disease, lupus and others. He said that alot of my symptoms are very much scleroderma and possibly a cross over with sjogren's in the mix. I am having an endoscopy and motility test on the 17th of this month and he said he will then be advising my specialist who to refer me to after that as my specialist is retiring at the end of this month!

So that is where I am at right now. I am still a bit scared and was taken aback that he mentioned scleroderma when he saw my hands. He said the skin is tight on the fingers and of course swollen. He said he sees alot of sjogren's/scleroderma patients, so he did make me feel confident in him.

 

Hugs to you all

 

Debz :)

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Good to meet you Debz,

 

I am glad to hear you are staying on top of your symptoms and that you have an experienced gastro doctor who is doing the same. He sounds like a keeper - good for you, keepers are hard to find. Sorry to hear your specialist is retiring. Hope you find someone you like as well as your gastro guy.

 

Good luck to you with your motility tests. They can be uncomfortable but not painful; hope all turns out alright.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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It sounds like you have some good doctors checking things out, I hope that after the 17th testing that you have some more concrete answers & help for your symptoms, I don't know what part of the country you live in (or if that matters) but heading into the colder months; it'd be nice to know more about what you're dealing with so you get proper care.

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It sounds like you are off to a good start in getting a difinitive diagnosis. I too have Sjogren's with Sclero. The Sjogren's was diagnosed first, along with the Raynaud's. I think there is a lot of cross-over of these. I'm so glad you are dealing with a doctor who knows what he's doing as that's half the battle. I know you must be on pins and needles with all of this waiting until you know exactly what you have, but at least you are on top of it and striving for those answers. I think some people out of frustration probably give up. I know I could have easily done that as I saw so many doctors over a year and no answers. It was only because I was so sick that I didn't give up as I knew that someting was wrong. But it's hard when some of the doctors treat you like you are making it up and that it's all in your head. Now with 6 different diseases running rampany in my body I'd like to go back to a couple of the doctors that I saw that were so dismissive and hit them in the head with all of my doctor's records and test results. Good luck to you and I will be thinking of you.

 

Warm hugs,

 

Peggy

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Hi debz,

 

It is very frustrating especially when there isn't a textbook picture for doctors to see. Of course we are struggling at the same time to not lose any more ground physically and financially. We try to accomadate all of those in our life including our jobs. It can be overwhelming.

 

It sounds like you have a great caring doctor who is trying to cut down on the confusion in your health life that this illness has created. Stick with it. He sounds knowledgeable of the disease process.

 

Wishing you speedy results,

 

Judy


A happy heart is good medicine.

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Hi Debz

 

Good to hear you had a good doctors visit all in all because it sounds like this one will get to the bottom of things for you. It's perfectly normal to be scared....everything is so overwhelming at times and you are dealing with so many things all at once with only hints and suspicions but no definitive diagnosis yet. I also want to wish you good luck with your tests.


Sending good wishes your way!

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Debz, I am so happy you went to a gastro doctor that really knew his stuff. Sounds like you had a productive visit. I am glad we had a chance to chat and you had time to write down information you needed to remember, to discuss with this doctor. I hope your husband listened well and was able to help you remember every thing that was mentioned. I will be anxious to hear how your endoscopy goes. I hope your doctor put you at ease with what will be taking place that day and exactly what will be done. I know you were worried about swallowing the tube with the camera on it. Did your doctor relieve your tension? Keep us informed on your developments and the outcomes. I look forward to hearing how you are doing.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Thank you all for your support. It really means so much! I am nervous about the endoscopy, but the gastro doctor showed me exactly what he would be doing and that I would be under sedation and wouldn't remember any of it. That helped a little.

 

My husband was fantastic....he confided in me later that he was upset when the doctor mentioned scleroderma, but as this has been going on for a long time now, I don't think it came as a complete shock.

 

We are heading into our spring here (Adelaide, Australia) so as the weather warms up, I hopefully, will feel a bit brighter!

 

Again thank you all and thank you Sheryl for chatting with me and helping me through some of my worries and questions! You are a champ!

 

Hugs to all,

 

Debz

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debz,

 

I had an endoscopy in April this year and it was a relatively easy process. I too was sedated and I remember everything before I went under. I was inpatient at the time and don't remember getting back to my room even though I know I was awaken very quickly after the procedure. Your gastro sounds like a keeper. Best wishes!


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi Debz!

I had an endoscopy not long ago, along with a stomach biopsy. I was sedated and don't remember a thing! It was a piece of cake! Not only was the procedure painless because of the sedation, but afterwards, my throat wasn't sore and I felt fine. I had expected a sore throat.

You'll do fine!

 

Mary in Texas

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Thank you Sweet, Smac and Bookworm. I am getting less nervous about it all. I expect as the 17th gets closer that will change a bit.

 

I just hope that it sheds some light on things and will help with the quandry of what my sjogren's is secondary to? I think that it will also help my specialist to decide who he will send me to when he retires at the end of the month....I will be quite sad, he has been a great doctor! I am nervous about seeing another rheumatologist...because like alot of you, I have seen a couple that really shouldn't be seeing patients. I don't want to experience anything like that again.

 

Take care and again, thank you for all your encouraging replies, it really helps!

 

Hugs to you all,

Debz

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Hey Debz

 

It will be sad for you to lose the doctor you feel so comfortable with when he retires...but since he is so good, I suspect he will send you to another that is very good too! The bright side of that is that if you don't wind up where you want to be, after what you've been through, you'll know enough to keep looking and ask for another! ;)


Sending good wishes your way!

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Hi everyone,

 

Had my endoscopy :) Not as bad as I thought it was going to be. The gastro guy said that things looked o.k. He said that my sjogren's is playing a part in my discomfort as I am not producing enough saliva while I am eating. He did take biopsies, so I will get those results when I see him next month. I am glad that there wasn't anything drastic going on. The reflux was confirmed and he said that I may need to increase my medication, but will be writing to my specialist about it. I see my specialist on Monday and he is going to refer me to another rheumatologist....I will be really sad to say goodbye to him, as he has been very good to me. Anyway, thank you all for your wonderful support, it really helped ease some of the worries I had about the endoscopy!!

 

Hugs to all Deb X

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Hey Debz

 

Glad to hear the test itself wasn't so bad after all for you and it's also good to hear that nothing drastic is going on with you, you must be relieved :) . I'm hoping you get another great doctor that you click with too!


Sending good wishes your way!

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Hi Debz,

 

It's great to hear your good news from your endoscopy. Hoping with you that you will get another good rheumatologist. Your present one sounds wonderful and I'm hoping the rheumatologist he is refering you to will be too, in his/her own way.

 

Wishing you lots of positive thoughts.

 

Judy


A happy heart is good medicine.

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Hello Debz

I know exactly what you are going through, Iwas diagnosed with Limited Systemic

Scleroderma 4 years ago. I have the endoscopy every year, it is not that bad but I always get put to sleep for it. I havent been well for the last three months- had to have a full body scan- and am having hydrotherapy at the hospital pool- which

is wonderful for the hands and feet. Do you wear hand splints to bed? that helps

a lot also. When you get diagnosed you feel as if your the only person with this

disease- in fact I had never heard of it. I had heard of Lupus- which is supposed to be in the same family. Im only new to this forum- but I hope by speaking with others - I will not feel so alone.

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lou56, welcome to the ISN forums. I hope you meet many new people here that you can share your experiences with. Others will help you with questions that you may have regarding your illness'. Many of us find things that help us, so we are able to share things that may hopefully help others. Tell us a bit about yourself when you feel like sharing.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Lou,

 

I haven't been diagnosed with scleroderma....it is one of the possibilities and has been 'mentioned'. Like you, I was asleep when they did the endoscopy :) which made things alot easier. I think the most anxious I felt was right before the procedure.

 

Thank you for your reply....this is really a wonderful place, with a wealth of information and support. I don't reply much to posts, but I do read and try to remember as much as I can! Hope that you can feel not so alone being here! It is hard when people don't understand the nature of these diseases and that is why being here is great, everyone understands the ups and the downs. Take care,

 

Hugs Deb

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Hello Debz. Glad to hear your good report. I hope it continues when you have your follow-up. Iwas recently diagnosed with Sjogrens and I don't know how it's affecting my saliva but it is doing a number on my eyes. I feel like I wake up with sand in them daily.

 

Lou,

 

Welcome to the forums. There's a lot of good information out here and some great folks.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi lou56,

 

I haven't had a chance to welcome you, but want to thank you for your helpful suggestions and let you know I'm glad you've joined our Family :rolleyes:

 

 

debz, I also want to let you know I'm glad you're with us...we try to help each other as much as we can and Sheryl, as well as others are great resources.

 

I'm sorry you'll be losing such a great doctor, but hopefully, he might be able to suggest/refer you to one who is as good as he.

 

In the meantime, I can appreciate your hubby's fear about the possiblity of Scleroderma.

 

However, the more empowered we are, in regard to being our own advocates and being a part of a great forum, the better we can cope with health issues that come up.

With the enormous group/family there is here, it's a sure thing someone can help as they've likely experienced what might be going on.

 

Take care and let us know how you're doing and your appointment goes.Hopefully, you have a good result and the rheumatologist is as great as your retiring doctor.

 

Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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