What is it?
Posted 13 February 2009 - 03:52 PM
Posted 13 February 2009 - 03:55 PM
I'm sorry to hear you've been struggling for so long. I know how frustrating it can be not getting any answers. It sounds like the new rheumatologist has it handled however. I think when you follow up with him it won't surprise me if he tells you that you probably have sclero with those labs results. Of course I'm not a doctor, but that's my opinion. When do you follow up with him?
Do keep us posted.
Posted 13 February 2009 - 04:00 PM
Welcome to Sclero Forums! I'm sorry you've been struggling with health issues without definite answers for a few years. Unfortunately that is very common when it comes to autoimmunity.
You've probably read elsewhere that I'm not a doctor, and not even certified to clean the restrooms in medical centers <sigh>. So although none of us can provide a diagnosis or quick, easy answers (that still remains in the hands of your medical team), I can say we're happy to have you here.
One problem in diagnosis is that for scleroderma, it is never made on blood test results alone, but rather the tests are used to confirm a definite pattern of scleroderma symptoms. Some antibodies appear in a variety of autoimmune diseases, which makes the quest all the more difficult, for patient and doctor alike. You may want to see our Difficult Diagnosis page, for starters.
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Posted 13 February 2009 - 04:05 PM
Posted 14 February 2009 - 02:10 PM
When you see the rheumatologist next might it help if you took a list of your symptoms in with you, there may be others you have not thought of.
For example I always said I had no gastro issues when diagnosed but I remember looking back that I did indeed have a long period of heartburn prior to diagnosis, incidentally I am getting this again now. In isolation it seems insignificant but team it up with something else, for me skin issues, and hey presto your 1+1=2 at last. If the doctor discounts the symptoms ask why you are then having them.
The difficulty with sclero, as already mentioned, is that no one test rules it in or out rather it is the sum total of tests and symptoms.
Please let us know how you get on and keep posting!
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Posted 15 February 2009 - 12:01 AM
Posted 15 February 2009 - 08:25 AM
I would like to welcome you and say that I'm so glad you found your way here!
You will meet so many wonderful, caring and supportive people who will have
thoughts/suggestions and/or links that may lead you to interesting findings!
There are a great number of us who have walked the path you are, knowing
"something was very wrong", but it took quite some time to get answers, just
as what you are going through.
I'm not sharing this to further frustrate you, but to just say that it is very difficult
to diagnose some of our illnesses.
My journey took four years and every diagnostic test one could think of. My internist
was the one who referred me to a gastrointerologist, who was then able to make a
clinical diagnosis, in addition to carefully reviewing the reports from all of the tests.
For me, I hadn't heard of "Scleroderma", "GERD" or any of the other illnesses that he
told me I had! I was grateful to him for actually having illnesses put to the symptoms.
After all, it was four years after my symptoms began, that I had answers at LAST!
However, it was another two years before I realized how these illnesses really translated
for me. After all, my research was done at the library, as I didn't have a computer at the time.
Thankfully like you, by the time I found my way here, I had a pretty good foundation of knowledge
about the mounting list of diseases I had going on in this body of mine!
I have no doubt that you will find the same comfort zone I have with the members and their experiences!
My best to you and again...I'm glad you are here!
Posted 15 February 2009 - 02:01 PM
Sorry you are going through this. I know how nerve wrecking the waiting and not knowing what's going on can be. I am 29 and also have a positive SCL-70 and a whole bunch of telegantasias (sp), other than I feel fine. My Dr told me I don't have sclero and just need to keep an eye on things and have a checkup every 6 months. I'm also going to Johns Hopkins in a month and I guess will have a better idea of what to expect after I see a sclero expert.
It hasn't been easy, I think about it everyday but slowly have found some peace and at least I'll know what to look for if I ever start feeling sick.
I have the advantage to be ahead of the game on this. I have better things to think about though (I'm pregnant with my first!!!)
We need to go on with our lives, I wish you the best and please stay positive and let us know about your follow up in 3 weeks.
Posted 15 February 2009 - 03:57 PM
I just wanted to welcome you...it seems I can't add any more than the others already have....other than to say that this is a good place to be for support and factual information.....I hope you keep us updated on how your appointments go.
Posted 16 February 2009 - 08:20 AM
Prior to all of this 8 years ago I was misdiagnosed as having celiac disease as I had such terrible bowel trouble. I also have had hypothyroid since I was a teenager. I also had polio when I was 6 months that was cured with the polio vaccine. I also had shingles which is another autoimmune problem. I also had reflux issues. I also had Raynaud's. I also had endometriosis, which is another autoimmune. So you can see I had so very many precursors to my final diagnosis of systemic scleroderma.
Through my year of trying to find out what was wrong I dealt with so many doctors who were misdiagnosing me or looking at me like they thought it was all in my head. My own primary doctor wanted me to see a psychiatrist for heaven's sake! I knew there was something wrong and I was determined to find out what was wrong. Thank heaven's I didn't give up as my disease is progressing pretty bad and I needed to be on certain medications to hopefully prolong my life.
Keep going until you find that your "puzzle" is solved. If they can categorically say that they have ran the biopsy tests for both the Sjogren's and Scleroderma along with the other tests and they come back that you don't have it then you don't. But until then keep on going!
Like I said, I now have 6 different autoimmune diseases and my sclero is advancing. This Thursday I see my new rheumatologist who comes from John Hopkins and I am so nervous but yet can't wait to see what he has to say about what is going on.
This forum is a great place to go to if you need to vent, if you have questions, or you just need support. Everyone is fantastic and I am so thankful that it's here.