I can't seem to put my finger on what is wrong; however, I have not been feeling well at all for the last few weeks. I know that it is most likely something related to my Ehlers-Danlos Syndrome but what exactly is going on eludes me. I have been experiencing a big increase in the horrible muscle and joint aches along with the bouts of inability to think straight and extreme dizziness. I also am having an increase in GI issues and the literally mind numbing headaches. I don't think any of it is food related as I have been hyper vigilant as always with ensuring that I don't have any of my off limits foods. The one thing that I am sure about is that I am very very tired of being unwell. I want off this merry go round and can't seem to find a successful way to achieve that desire.
In other news, I have fired my Rheumatologist only she doesn't know it yet. They called a month of so to let me know that she was unable to keep my last appointment and I just have not rescheduled it. I honestly do not have any plans to reschedule... I finally was able to obtain a copy of a fairly serious and expensive lab test that she had done almost a year ago. It is called an ANA panel if any of you are familiar with the blood test. She had told me that everything was fine on the results. She lied. Well when I finally got a copy I found out that it was anything but fine. I currently am trying to find a doctor that really can interpret the results and what they mean. However, even a layperson knows that it isn't good when things read positive and are listed in the abnormal range. Based on my research I am trying very hard not to jump to any conclusions as there are a list of things that are possible with the results I have. Lets all just hope that it is the EDS showing up and not something more in addition which appears to be highly probable.
Just in case someone actually knows how to interpret the test results... The test was a ANA 12 Plus Profile.
Here are my out of tolerance numbers (There is a lot more data on the results).
Anti-Nuclear AB = Abnormal - Positive & Normal Range - Negative
ANA Titer = Abnormal - 1:40
ANA Pattern = Speckled
ANA Titer = Abnormal - 1:40
ANA Pattern = Nucleolar
Complement C3 = 206
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Oh, pally, I hope you feel better soon. It's hard to be in chronic pain. My keister has been hurting for 6 months now and so I can sympathize. I hope you find someone to help you with the bloodwork.
ReplyDeleteI'm so sorry you aren't feeling well. How awful it must have been to see your test results and realize you got the wrong diagnosis. I hope someone can read them and give you the answers you need. Take care of yourself.
ReplyDeleteSounds like you need to make a trip to Mayo Clinic!! Did you know that you can send in a request-without a dr referral- with all your info to Mayo? They will read it over and give it to drs to review and whoever thinks they can help you they will set up a visit.
ReplyDeleteThats what we did to find what was causing our daughter's crippling pain.
Hope you get this taken care of soon! Not fun being "off kilter".
Grr blogger ate my comment. Each lab has different variations of normal but if those were drawn at our lab the C3 is normal and the ANA is only barely positive. We'd draw it again to verify the results as well as 1 other lab. But ya if you are having pains a second or even third opinion is always welcome.
ReplyDeleteHope you are feeling better...
ReplyDeleteSorry you're not feeling well. You deserve to find a better doctor! Good luck.
ReplyDelete