jaateach

Newbie

8 posts in this topic

Hi all,

My name is Joe. Been dealing with symptoms for twenty years. I'm now 44. Of course because doctor's couldn't find the problem, it was all in my head. This year things got worse, ended up in the emergency room with chest pains. Very lucky to have a doctor running a rheumatologist clinic in the hospital. he was asked to look in on me. By the time I left the hospital, I had sclero diagnosis. It amazed me how much relief it brought to have a diagnosis. I've been dropping in on this site and while I'm sorry you all have difficulties I must sat that it feels good to not be alone. I have spent all my illness alone and because of having no diagnosis I used to hide when I was sick for fear that people do begin to think you're crazy. Anyhow, just wanted to say to everyone. Thanks for your strong presence, Joe

Share this post


Link to post
Share on other sites

Hi Joe,

 

I'm sorry that it took a trip to the ER to get diagnosis'ed, but after all those years it's so good that you can finally name all those symptoms--and it's not hypochondria! I used to tell one particular person that I wish I were making everything up since it would be easy to stop, but that's not the case. A warm welcome to the board, and glad that you found us here!

 

Best wishes,

Elehos

Share this post


Link to post
Share on other sites

Welcome Joe!

I am so sorry it took you so long to get a diagnosis. I felt a great relief when I finally got my diagnosis. I am sorry that you ended up in the er, but at least you got a diagnosis out of it. Take care of yourself!

Nan

Share this post


Link to post
Share on other sites

welcome jaateach,

It is never a good thing to suffer, but I am glad that you recieved a diagnosis. Now you can get proper treatment!

Hugs,


*WestCoast*

 

********

Share this post


Link to post
Share on other sites

Joe,

 

Welcome! I am so glad you don't have to feel alone any more ever! I am not glad that you have scleroderma, however.

 

What an awful thing to have gone so many years without a proper diagnosis. It is not uncommon with sclero and other connective tissue diseases, but your length of time--did you say 20 years??-- is particularly long.

 

I hope you are getting good care. You will find lots of good information on this site and great people!

 

xoxo emmie

Share this post


Link to post
Share on other sites

Thanks so much for everyones warm welcome. As I've never been participated in a forum before I'm not exactly sure how to respond to everyone, I guess I'll have to read a bit to find out. But I will answer some general questions that were asked.

Yes, I am getting great care. I'm in buffalo and there is a doctor who my wife calls "House" if any one is familiar with that tv show. My doctor is a diagnostic genius minus the thorny personality. I read a thread here somewhere that doctors no longer use clinical observation and listen to the patients symptom list. That is exactly why for 20 long years no one could help me, until now. He heard my story and said well, your symptoms are vascular in nature (raynauds) thats going to be easy enough to treat now we have to see whats happening to cause that. Bang scleroderma. My digits are not affected by the raynauds which is why no one ever thought about that. My raynauds happens so intensely that I get vasoconstriction through out my body especially in pulmonary artery. Anyway, my doctor is excellent.

 

It does feel good to have diagnosis so I no longer feel crazy. Did everyone see the new research on this site about the id'd gene that could lead to cure? Thanks agsain for warm welcome, Joe

Share this post


Link to post
Share on other sites

Joe, I had read your other post before reading your introductory post... so I'm glad I read this one too!

It's awesome that you like your doctor...as you can see, that's paramount to your better treatment, for sure.

I can certainly relate to what you were saying... I flet the same way, prior to diagnoses..., as though I really was a hypochondriac, even though "the flu"I had wasn't leaving, I just kept losing weight... as a result of the very frequent vomiting, which I had very rarely done, until then.

 

I'm glad you're posting... you're right... we're no longer alone when we're here and face same or similar health issue. For me, it's comforting to know folks here understand... because they're living it too. I will say , however, that our families are great too, but they can sympathize... not empathize, so any information we can obtain here... is a bonus!

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Joe,

 

Welcome to the Sclero Forums. I'm sure sorry to hear you found us because you have sclero. You will find an abundant of information, support and friendship here.

 

I look forward to knowing you better!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now