Blood Work Results
Posted 17 September 2010 - 08:29 AM
She wants me to stop the prednisone. She said to keep taking Procardia for the Raynaud's. See an ophthalmologist and if I get the "Okay" then begin Plaquenil, then see her in two months for more blood work and to see what happens. I don't want anything serious to be wrong, but I also don't want this all to be in my head because it's very, very, very real and physical for me...
I do really love this rheumatologist. She went to hug me after the appointment, and she's very much trying to help. Have any of you experienced negative blood work on virtually everything?
Thanks everyone. Peace and blessings,
Posted 17 September 2010 - 09:45 AM
I'm really sorry your rheumatologist couldn't give you a diagnosis at this appointment. It's miserable, but what you are experiencing is so common to us.
I was given a diagnosis of fibromyalgia early on and even after I had a positive ANA, a rheumatologist told me I didn't have anything and was unlikely to develop anything. By the time I did get a diagnosis of systemic sclerosis 2 years later, I had already developed pulmonary fibrosis, pulmonary hypertension, and pretty severe GERD with esophageal erosions. But for the years before I got that diagnosis, I had been made to believe that I was probably a raving hypochondriac. So I feel for you from the bottom of my heart.
You've got a couple of things going for you. One is a doctor who sounds like she is on the ball and has a treatment and testing plan in place. Liking her and having her willing to partner with you in your care is a huge bonus. Another is that fibromyalgia is no longer considered to be 'imaginary' and some really good work is being done in the field. There are some very good studies out there and I'd recommend a look at our Fibromyalgia page. In my experience, if you can break the cycle of pain and fatigue, other things start to look up. And having some explanation, even if it turns out not to be the only one, for what is going on is helpful.
Don't let anyone make you feel that it is 'all in your head.' I talked myself into persevering for a diagnosis by asking myself one question: what do I stand to gain by being perceived [by myself or others] as being sick? Nothing, not one single thing. Therefore, in my own brand of logic, what I am feeling is real and I deserve to get both answers and treatment. You keep on keeping on too.
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Posted 17 September 2010 - 10:24 AM
I have great empathy for you...and know first-hand ALSO knowing something is wrong, yet questioning my own feelings...am I, or am I not?!
15 years later, I am able to reflect upon the findings and feel so grateful to have the husband I do, who KNEW it wasn't all "in my head", as both you and Jeannie alluded to. Even still, it's truly heartbreaking when the doctors are unable to diagnose us and we leave their offices feeling defeated.
Please, keep your chin up. I will keep good thoughts about you and hope you are able to get the answers that will confirm your symptoms are very real.
Hang in there, Kiddo.
Posted 17 September 2010 - 04:19 PM
I only got a diagnosis when he had a disagreement with a surgeon who thought I had it and finally sent me off to a rheumatologist to settle the question.
Basically it does sound like your doctor will keep on top of this and you will be able to catch any changes in the blood work in a timely manner. And since the treatment for various scleroderma conditions is to treat the symptoms, she doesn't have to be absolutely sure to do you good.
I know it's easy to doubt yourself but you are the expert on how you feel so keep nudging the doctors whenever you feel something needs to be addressed.
Posted 18 September 2010 - 03:05 AM
It is very good to know that I'm not alone. It is so frustrating and disheartening to have people think that it's in your head. I guess that having a "real" diagnoses just makes it so much easier. I have a mother-in-law who thinks she's been through everything I have been through, and much more, and "She was able to do it." I have a sister who is very sick with Lupus,and a slew of other serious autoimmune diseases (she has limited Sclero as well), and somehow she is able to keep going and going and going (she doesn't judge me, at all though) ... Then there's me who doesn't have a "real" diagnoses, and it takes everything in me to get through the day.
Another thing that I liked about this doctor was that she said "Well, you definitely have the Raynaud's, and we'll give whatever else is going on a name for now. 'Fibromyalgia, and Connective Tissue Disorder'". She knows that people want a name for what's going on, but more importantly, and as you all have said, she is treating me with whatever she knows to do.
Again, my heart goes out to all of you who've been dealing with all of this for so long. I truly cannot express how much I appreciate your helping me through this!
Peace and blessings,
Posted 18 September 2010 - 07:35 AM
Blood tests are not the be all and end all as far as a diagnosis of scleroderma goes. This is because some people with positive markers in their blood never develop the disease and some with the disease never develop with the blood work, like me! I have diffuse with myocardial fibrosis and heart failure but my last blood test in April showed, well, nothing!
What you have got in your favour that many who were in your position did not is a doctor working with you and for you. Should things develop you already have a doctor right by your side.
Take care and keep posting.
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Posted 19 September 2010 - 01:02 AM
Sounds like you have quite a bit going on and I would be absolutely stunned if it was all in your head...because I'm certain that it is not and don't let anyone tell you otherwise ok!
I have fibroyalgia and I can tell you that my specialist told me that fevers and joint pain are not symptoms of fibro (myalgia means pain in muscles) which is how he knew I had more than fibro going on. I was also running low grade fevers all the time. It was really weird and still is sometimes. I would feel horrible and my skin gets hot but yet the thermometer does not always register a fever. That was when my family doctor also said, hummn...sounds autoimmune to me.
You need symptoms and bloodwork for a diagnosis...bloodwork alone is not enough. Sometimes bloodwork can show a false positive (no symptoms = still no diagnosis). That's why you can have symptoms and be diagnosed even though your bloodwork is showing negative. The key my specialist said, is that when it shows, it shows (if it does show, I take that to mean then they know what they are dealing with specifically).
Sounds like you have a doctor willing to work on any symptoms, that's definitely what you want and if you love her, keep her...sometimes they are really hard to find as well which you will see by a lot of our posts....keep the good ones, toss the bad ones
Keep us updated ok.
Posted 19 September 2010 - 08:48 AM
Posted 19 September 2010 - 09:05 PM
I am in the similar situation as you are. Negative blood work, negative biopsies, all doctors except my rheumatologist deny that I have sclero. My rheumatologist says that according to the symptoms it may be sclero but that they still cannot prove it. I am sure it is sclero.
In the beginning (2-3 years ago) I was desperate to find diagnosis. I knew something was very wrong. Now I have found some peace of mind. On outside I pretend that I am healthy (I have told only few closest friends and my family). Only my mouth shows sclero (wrinkles and some thick skin on the upper mouth) but people do not know that since they have never heard about this disease. I also have fingertips red and shiny with thin skin. My joints and muscles hurt: sometimes more sometimes less. Not so much as in the beginning.
On the other side I work closely with my rheumatologist to monitor the development of the disease. I have regular checks like diagnosed sclerodermians. In this beginning period these checks are very often to catch possible internal organs involvement. I also try alternative therapies.
Posted 20 September 2010 - 03:36 AM
I just wanted to say that I'm also in the same position you are and have been here for about 10 years. Not easy, my heart goes out to you. I take comfort knowing that my disease can't be very severe or it would have been diagnosed by now. My doctor has it on his radar and monitors it. He has told me I have a grumbling disease and for now we call it fibromyalgia. The funny thing is I have had a positive ANA for the past 10 years (nucleolar pattern for the past few years) but just recently had a negative result for the first time. I did however have my first positive RF.
Like the others have said you have a very good doctor. The folks on here have been a great support for me over the years. You are not alone.
Posted 21 September 2010 - 04:11 AM
I also spent a good amount of time in the pre-diagnosed category. Actually, I was diagnosed with an awful lot of things during those years, but none of them seemed to be entirely complete. Finally, things very slowly started to fall into place. I really didn't care whatever disease(s) I had; I only wanted the peace of mind to know what it was.
If I knew then what I know now, I would have just told everyone that I had "arthritis" and left it at that. The term arthritis encompasses about a hundred different diseases, including Sjogren's, psoriasis, scleroderma, lupus, Raynaud's, and rheumatoid arthritis. Other people seem to think they know what it is, too, whereas hardly anyone knows about scleroderma.
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Posted 26 September 2010 - 06:07 AM
I've wanted to reply all week long, but between homeschooling, losing our power after a huge storm, and the doctors appointments, the first opportunity I've had is right now. I saw the ophthalmologist on Friday, and it would seem that at least my eyes are very healthy! I got the go ahead for the Plaquenil and started that on Saturday.
I've been reading a lot of your posts about stomach issues related to sclero, and also how you get confused as to whether your various symptoms are from medication, or the disease. I had been told years ago that I had irritable bowel syndrome, and have always chalked up any symptoms to that. However immediately following my hysterectomy last January, I began with severe nausea and vomiting (along with migraines). Both the migraines and the nausea have tapered to a few migraines per month, and the nausea rarely causes vomiting, however I'm still nauseous every day. I don't know if this is from the medication (and now the plaquenil on top of everything) or if it's because something else is going on. Whatever the case is, I'm so thankful to have you all here to come to! Thank you!
Peace and Blessings,
Posted 26 September 2010 - 09:40 AM