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Frustrating Wait


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#1 Lillskuzi

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Posted 09 August 2007 - 07:01 AM

HI

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!
Susie

#2 Sweet

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Posted 09 August 2007 - 10:04 AM

Hi Lill,

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!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Lillskuzi

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Posted 09 August 2007 - 10:18 AM

Thanks for your supportive reply. It is the best thing to know that there are others out there all over the world (I love travel, foreign languages and other places so like the international feel to this site!) who have been there, or who are there.

Sometimes all you need is a listening ear from people who know the score, who aren't doctors or your family.

Thanks :)))
Susie

#4 Sharonvandee

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Posted 09 August 2007 - 10:52 AM

BIG HUGS

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.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#5 WestCoast1

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Posted 09 August 2007 - 01:04 PM

Hi Lill and Welcome,
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.

Hugs &
*WestCoast*

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#6 WestCoast1

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Posted 09 August 2007 - 01:06 PM

Hi again Lill~
You may have already found this section on Raynauds on the ISN, but just in case it has some good tips:
Raynaud's Prevention.


*WestCoast*

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#7 Shelley Ensz

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Posted 09 August 2007 - 02:24 PM

Hi Lill,

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!


Warm Hugs,

Shelley Ensz
Founder and President
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.

#8 nan

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Posted 09 August 2007 - 03:12 PM

Welcome! Waiting is so hard to do. It took a long time for my diagnosis of scleroderma. One doctor said it doesn't matter what you have you just treat the symptons. I told him I wanted to know!!!!!!!!!!!!!!!!!!!!! All of my bloodwork is normal , except for high ANA. I went to Johns Hopkins to get my diagnosis.
Take care and I hope that you will get some answers soon.
Nan

#9 janey

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Posted 09 August 2007 - 04:29 PM

Lill,

 

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.


Janey Willis
ISN Support Specialist
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(Retired) ISN News Director
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International Scleroderma Network (ISN)

#10 Lillskuzi

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Posted 09 August 2007 - 07:54 PM

Hello all,

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 :-)))
Susie

#11 jefa

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Posted 09 August 2007 - 08:21 PM

I can't add anything to the wonderful advice you have received already, but I do want to add my welcome to the ISN Sclero Forums. Please keep us posted on your journey and enjoy your predominately good health while you have it. As you well know, Raynaud's is a lot more than 'just cold hands' and you will learn from the links you have been given that preventing these attacks is of prime importance.
Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#12 Lillskuzi

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Posted 10 August 2007 - 10:14 PM

HI,

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.

Stay Happy
Susie

#13 truman

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Posted 12 August 2007 - 11:17 AM

I know the feeling well. I've gotten responses from doctors "what can go wrong with you, will go wrong" and the nickname "mystery woman". Both of which I did not appreciate. All they wanted was to get me in and out within their 15 minute allotment time. The rheumatologist I'm seeing now, took the time to hold my hand, hand me tissues for my tears and asked how she could relieve my fears. Even when I went to get blood tests after just learning of the diagnosis, the technician kept say "gee, you're skin is soooooo tight......not what I wanted to hear at my lowest.
Tru

It is what it is...........

#14 Lillskuzi

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Posted 13 August 2007 - 07:27 AM

Hi Truman,

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.
Susie