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Good afternoon all, I am nearly 48 years old and have felt unwell for 15 years now. I have all sorts of problems. My bowel does not work, I have acid reflux, my body burns, I have Raynauds, chest problems, headaches, fatigue, aching all over, muscle spasms etc etc.

I saw a rheumy last week and he has ordered blood tests, a chest x-ray and urine test. What I most fear most is if all my tests come back as normal. I have felt very unwell for the last two years, work full time and do not know how much longer I can continue with my daily routine. Does anyone have any suggestions as to where I go if my tests come back as normal? I had tests last year for MS which were negative and scleroderma tests have been negative also. Many thanks for your suggestions - this site is so friendly and helpful.

Caroline
 

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((((Caroline)))) + welcome to the site

I'm so sorry your feeling so bad and frustrated at the moment. I do hope you get some answers soon so that you can start to feel better.

Most of the people on her can empathise with you. For some it has taken some time to get a diagnosis. I myself have been in that situation and understand how frustrating it can be. I have forgotten how often I had my thyroid tested because I complained of being excessively tired:hehe:. Never the less I got there in the end and it was worth the wait.

It's easy to say hang in there, but please try to keep positive. I got to the stage were I thought why bother but I am glad I did keep plugging away.

Look after yourself and hope that get your answers soon!

Claire
 

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Hi Caroline,
I'm still waiting for my test results, and previous ones have come back normal. the only thing i have on my side is i do have discoid lupus.
First does your Rhuemie know about lupus & immune issues, if so you are with the right person, if not then find one who does.
Lupus is a hard thing to diagnose, they have to rule out other things first. It can take years for a diagnosis, as i am finding out.
I suggest that you get copies of all your tests done, if poss. Make out a list of all your ailments, even if you think it is trivial, & photos if you have any rashes.
Caroline, you are not alone in this, there are many of us here that are going through exactly what you are, take heart we know how you are feeling.
It is hard & very frustrating at times, try not to stress about it ( which is not always easy ) cos stress can make us feel worse, as i recently found out.
Please keep in touch, and ask questions, there is always someone with good advise, they have been a god send to me, thanks girls.
Gentle hugs
Sandra.
 

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Hi Caroline. I am so sorry you are having to go through this too! I understand what you mean when you say your biggest fear is that all of the testing will come back normal. It's so frustrating when you KNOW something is wrong, but they can't figure it out! I am also in the same boat as you. All of my tests keep coming back normal. People that haven't been through this don't understand...they think we should be happy that our tests aren't showing anything wrong. Well yes, that's good in a way...but it's also very frustrating because we know there is a problem, we just need them to figure out what that problem is!

I don't know anything to tell you to help, I just wanted to let you know that you are not alone. I'm so thankful for this forum! It's nice to have a place for us to discuss all of this with others that understand.
I hope your tests show what is wrong so that you can get the medical help you need and deserve and receive treatment that can help you feel better. ((((((((((((HUGS))))))))))
 

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:wavesmile:greetings and salutations

first i wanted to welcome you to the sandbox and say that i'm sorry to hear you are doing poorly right now.

this is a great place to come to especially while waiting on the long and daunting road to a diagnosis. it is very true indeed that i can take years to get a final diagnosis. like you i have many many test all seem to be either neg. or inconclusive. took nearly 20yrs for it to all come together and even now my bloods don't always agree with the diagnosis.

best advice if they come neg. or normal is don't give up. keep on digging obviously something is going on.

hang tight and dont' give up

take of yourself and let us know how the appointment goes

hugs and kisses



 

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Hi Caroline,

Welcome to the site.

Part of the problem is so many diseases share the same vague symptoms such as fatigue, muscle aches/cramps, headaches and such. Unless the blood work shows something or some significant symptom crops up getting a diagnosis can be difficult. The doctor may be leaning one way or the other but has nothing to support the theory. I hope your tests finally give the doctor an indication of what is going on.

Have you been tested for Fibromyalgia? Did the doctor check for tender points on your body? My daughter has the same symptoms you listed and tests positive for Fibro.

In the meantime I suggest you get all your insurance in place. If you are diagnosed with one of the autoimmune diseases you could have difficulty getting insurance once you are diagnosed.

Take care,
Lazylegs
 

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Caroline,
I understand the frustration that you can feel when your body is telling you one thing and doctors are telling you something else. In my expereince the body is always right, it just takes time for the doctors to find out what is going on. Lupus is a hard thing to dx as it act so much like other diseases. It often leads the doctors in the wrong direction many times before popping out and making itself know to the medical community lol. In the mean time you left feeling tired, sore, and crazy. None of which are any joy to have.

Keep going to your doctor and looking for what is going on with you. You can also ask your doctor if it would do any good to see a specialist like a rhuemy to help out. Keep in mind that there are diseases that are closely related to lupus. Many of these can be just as hard to dx.
 
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