Friday, February 21, 2014

It's Friday! I have a case of the doctor nerves

In just 6 days I will be seeing a new rheumatologist, that I've been waiting 4 MONTHS to get into see! Have seen a billion doctors (including Rheumatologists) I haven't had luck with diagnosis and now my other doctors are questioning my Sjogren's Syndrome diagnosis 2 yrs. ago... I question it myself...My biggest problem right now, I can't seem to get off the Google and stop researching lupus and Rheumatoid Arthritis (both run in my family) and since 2 yrs. ago I tested positive for both SS A&B antibodies...  however haven't tested positive since...It might be one of those diseases not Sjogren's since I am developing new symptoms all the time... Started taking 150mg of Imuran around Christmas time and 8 weeks after started feeling like a whole new girl! (as you have seen in my blog I was feeling good) bam! the other day It flopped on me and I feel like the old me...still not as bad so Imuran is doing something. Autoimmune diseases are SO complicated to diagnose! I was told recently that I test for nothing most the time and when I do test ANA positive it goes back to negative and well basically I'm hard to test for anything through lab work... This being said I may be diagnosed on symptoms and other factors than blood work... So as this complication continues my nervous level rises. This happens every time I see a new doctor. A lot and I mean A ton of doctors have treated me poorly and some have been great! (that's normal when you have complicated autoimmune diseases, you don't always get believed) So I am nervous I will just be written off or ignored...also nervous of what will be found or if they won't be able to do anything for me... Have lots of mixed emotions. I do have a for sure skin biopsy diagnosis of Lichen Planus ( an autoimmune  connective tissue disease that attacks the skin cells where they are being created, also can get it on mucous membranes, finger/toe nails and personally I feel you can get it anywhere...some have gotten it in their esophagus even!) I have a 2nd cousin who also has this disease.  When I got the biopsy it came back lichen Planus and possible lupus but doctor didn't think I had lupus because back then I didn't have the symptoms and I didn't test for it. Also I have had several docs tell me that they are 99% sure I have Hashimotos Thyroiditis.(autoimmune disease that causes inflammation and basically over time kills your thyroid gland) I am Hypothyroid, and I have a resting heart rate of around 130 average... That's very high! 2 Cardiologists have been totally stumped over this one! So I have a bunch of symptoms and a bunch of opinions and No answers!!! frustrations at high lol Patience is a virtue! I have to remind myself of this constantly. The doctor nerves will always be with me I think especially with a new doctor...Sometimes I feel like the nervousness is drowning me! Oh wait that's anxiety haha it will be okay the lord is with is his plan for me whatever the outcome!