Posted 09 August 2007 - 07:01 AM
I don't really know where to start, so I guess somewhere near the beginning would be wise. I have a long history and different symptoms and am still waiting for diagnosis; I guess you have seen many stories like this here.
I was given a question mark diagnosis of scleroderma back in March this year, and it still remains a question mark...i ended up in hospital in March when I had some infected ulcers on my fingers, and I then learnt I have Raynaud's quite badly. It was a relief to know I wasn't being oversensitive about my cold hands! Since I have gastric reflux and constipation, the doctors suspected it may be scleroderma. However, none of the many tests they did were anything but normal. They said is is feasible that it is scleroderma in the early stages, hence the normal test results. I was told that once they had done some more tests, (oesophagal manometry and 24 hr PH study), they would know if the reflux was due to scleroderma or not.
I had the test in July and have been waiting to hear since. I had an appointment with the rheumatologist today, who read the report (even though it was via the gastroenterologists that I had the test), which was basically inconclusive. It doesn't look like the reflux symptoms are caused by scleroderma, although from the findings, they can't be sure.
So now I don't really know what will happen. I had kind of spent the time between being given the question mark diagnosis and the test in July thinking it was worth the wait if it meant I would find out for good, so I could at least know either way. It is therefore pretty frustrating to have an uncertain outcome again. Everything indicates normality, yet each time, there is some little thing which stops the doctors drawing the conclusion that I DO NOT have scleroderma. Which is almost enough to make you believe you do, sometimes. Now it feels like I will have to wait for the disease to progress in order to know I have it. And at the age of 25, that is a pretty frustrating situation! Especially since I have been in a similar situation with menstrual problems. My periods stopped a few years ago, yet all the tests I have had to investigate that reveal nothing untoward. So I feel again like I am just "waiting" while something brews, yet quite what, no-one is sure.
Today I am pretty gutted that the tests haven't been conclusive either way. I really do not want to wish myself ill, but I would find it much easier to deal with if the test had at least confirmed scleroderma.
I don't really know what will happen now. I am being referred to a national specialist; my local consultant said the national centre may run some different tests, but I don't know what. I can't believe any more exist, I have had so many!
Thanks for listening, especially since I have read many stories on here of people who are in a much less healthy position than me. I think it is the uncertainty, rather than my symptoms, which are difficult for me to deal with.
That's it! I feel better for sharing it with people who are in a similar boat. No one I know has heard of scleroderma, and think that having cold hands is not a big deal...and I don't want to bore them with details of the excruciating pain and impact having cold hands actually has on my life, because last winter it almost became a disability in its own right. Anyway, I have finished now!
Posted 09 August 2007 - 10:04 AM
Welcome to the Sclero Forums. I'm glad that you've found us!
You are in the company of many many others that are in the same boat as you. It can be very frustrating at times. The important thing is that you continue to see the rheumatologist on a regular basis (every 4-6 months) and continue to report all of your symptoms etc. Sometimes it can take years for it all to unfold, but you don't want to minimize anything you are feeling or leave it out when talking with your doctor. Giving him/her as much information as possible will help move things along to a proper diagnosis.
Hang in there!
Posted 09 August 2007 - 10:18 AM
Sometimes all you need is a listening ear from people who know the score, who aren't doctors or your family.
Posted 09 August 2007 - 10:52 AM
The waiting game is the worse and most frustrating bit you know things are changing in your body but the blood test dont back it up and you are left feeling empty and alone and you begin to doubt yourself. I am in the same boat waiting to be sick enough for someone to do something other then muck me around with inconclusive, were not sure, you show some of the signs, your too complicated.......grrrrrr
Hang in there and know you are not alone.
Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive
a little bent and broken and almost beyond repair!
Posted 09 August 2007 - 01:04 PM
I am glad that you found the forums, and also sorry to hear of all that you are going through....mainly the agonizing wait! A lot of us can relate to your dillema of a very difficult diagnosis.
It is a good thing that you took the raynauds seriously! It can be so painful and only get worse if you arnt aware of how to avoid it. I will be rooting for you with the blood tests...either they will let you know that you are all clear of scleroderma, or give doctors answers on how to help you.
Posted 09 August 2007 - 02:24 PM
Many of us have been there, done that, waiting for a diagnosis. For me and many others, that literally took years. Which is not all that unusual with autoimmune diseases. It takes an average of 7 years for a lupus diagnosis. Even then we often hear of people who have finally achieved a lupus diagnosis, only to have it completely overturned by their next rheumatologist. And so on and so forth.
Along with many patient stories on our main site and in our Voices of Scleroderma book series, we also have a page about Difficult Diagnosis that I think you will find very helpful. It is:
Scleroderma: Difficult Diagnosis
You have definitely found the right forum. So, please hang in there. It is good to have you join us!
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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.
Posted 09 August 2007 - 03:12 PM
Take care and I hope that you will get some answers soon.
Posted 09 August 2007 - 04:29 PM
I'd like to join the others in welcoming you to the forum I know how frustrating it is not knowing what's going on, but it sounds like you're not giving up. Hang in there Darlin'. As others have said, it may take a long time for a definitive diagnosis. Keep a written log of all your symptoms and take them to every doctor's appointment. We tend to forget things when we're in the doctor's office, I know I do. Write down your symptoms and all your questions.
No one wants to be sick or to think that a chronic illness is a possibility; but if you feel bad, you need to know why. Please keep us informed as to how you are doing. You've found a great place for support and information.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)
Posted 09 August 2007 - 07:54 PM
Huge thanks for all your messages of support and links to other places for info.
I have been surfing this site for months and have read it all many times, but have only felt like posting this now.
Generally I feel so healthy. Just the innards don't seem to function all on their own. But thank you for reassuring me that it is important to note every little symptom and not worry about being a hypochondriac. It's better to be sure than blaze!
And it's nearly the weekend, and it's sunny where I am so hope it's the same for you :-)))
Posted 09 August 2007 - 08:21 PM
(Retired)ISN Sclero Forums Support Specialist
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International Scleroderma Network (ISN)
Posted 10 August 2007 - 10:14 PM
Yes, all your advice is right. I have found the right place and feel much better already for doing so. You have made me realise the significance of not underestimating little symptoms. In this disease, many different types of symptoms seem to be relevant.
Posted 12 August 2007 - 11:17 AM
It is what it is...........
Posted 13 August 2007 - 07:27 AM
It is such a shame to hear you have received such tactless and thoughtless comments.
I think you can rest assured people here will be a tad bit more understanding. I am glad you saw a least one doctor who took the time to listen.
I think one of the most important things any good doctor can do is treat us as people to help and support, not as subjects on which to apply the practice of medicine. Hopefully you will get to know more of the former soon.