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Stacey, I am so glad you have shared what has been going on with you and that you have received such knowledgeable support here. I am so grateful to have found your thread today, and can't tell you how closely I can identify with all that you have been through recently. I know that one of the most difficult aspects of my current, similar experience is that I feel alone, as I don't know anyone who has been through this tail-chasing experience. Life has been one big question mark lately, and that's not something I've ever lived with before.

I'm 41 years old and have been off of work for a few months due to a significant case of adrenal exhaustion. We'd been treating that and all that it entails for a good couple of months before I finally saw a dermatologist for my hair loss issue, which really started about 3 years ago. Because I also had major thyroid issues, (as is often the case with adrenal fatigue) we've thought it was related to my being severely hypothyroid and resistant to any meds I took for it. When we eventually started to see an improvement in my thyroid levels and the hair loss was worsening, I realized that I'd better find out what was really causing my hair to fall out, afraid of what the mystery cause might be doing to the rest of my body. Long story short, the dermatologist ran quite a few tests and whaddayaknow! My ANA was positive, as was my anti-centromere B. I've had positive ANAs in the past - about 12 years ago, which were found after I miscarried repeatedly. (total of 5) I finally gave up on having another child and went on with life, never having reason to think there were any autoimmune issues brewing.

Many of my symptoms over the last year have confused my doctors, and you actually named a few of them. MS was ruled out early on, which made the neuro issues even more puzzling. My adrenal issues were so extreme, though, that these confusing symptoms could have been attributed to them, and so they were. As my adrenals are improving, though, several of these "weirdnesses" remain. My memory ranges from poor to non-existent, I talk in circles, have numbness, tremors and weakness in my hands, arms and legs. I don't have much control as far as fine motor movement goes in my hands, which is very difficult to deal with. I stutter and stammer all of the time and people look at me like I am crazy. It really confuses my family. I don't remember what you said about your energy level, but the feeling of profound fatigue I have is impossible to describe. It's the symptom that I hate the most, even more than the baldness, because it's keeping me from living life.

Just before having the bloodwork drawn, I had undergone both an EGD and a swallow study because I had been complaining of trouble swallowing. I didn't find out until later that my GI doc had, in fact, performed an esophageal dilatation and once I started reading about CREST, thinking about this scared the heck out of me.

After going out of town because of the amount of time it would take to get into a rheumatologist locally, I was looked over from head to toe by a couple of doctors. A highly esteemed rheumatologist told me that I "do not have Scleroderma", as that was my biggest fear. I have an aunt who has it and that hasn't helped my anxiety level since seeing those lab results. He recommended that I see the local doc and suggested that I begin considering Plaquenil before seeing him. He was also quite pleased that I was already on Prednisone for my adrenal issues and told me to continue with it. I felt very reassured by what he'd told me. He drew a little pic and told me that what might be going on is Lupus combined with some overlap, which he felt might be APS, since I had antiphospholipid antibodies with each miscarriage. However, he was stumped as he examined me. He repeatedly acted like he wasn't seeing things that he'd expected to see. I hoped that this was a great thing. I came home relieved, but the question marks remained and I hoped that they would be fewer (or at least smaller!) after my appt with the local doc.

No such luck. He listened to my history and told me how stumped he was by my labwork combined with my symptoms. He spoke as if I have Lupus and said that he is confused and more concerned with getting to the bottom of "the overlap diseases you've got goin on here". I felt pretty good until he made one little statement. When I told him that I'd been having trouble swallowing and that my esophagus was dilated during the EGD, he said that I'd probably have to have that done again. I don't know of any diagnosis other than the Sclerodermas that involve esophageal issues, but I hope I'm wrong about that. Needless to say, my brain jumped back to the possibility of Limited Scleroderma/CREST. He also said that regardless of what is going on specifically, Plaquenil could help slow the onset of new symptoms and help with any current manifestations of the mystery disease(s). I started that on December 18th, and I left there with an appt to see him in March - three months later, just as your doctor had done with you. I about died when I realized it would be another three months of waiting!

I had to get on top of the stress that all of this was causing, because every single symptom I had been experiencing was getting worse when I was in a constant adrenaline-fueled state. It was a fight-or-flight kinda thing, and I was fighting hard to FIX IT. Being locked in fix-it mode while not knowing the nature of the problem is not conducive to sanity. I knew I had to accept that this is going to be a waiting game and that nothing I could say or do would change that. I also knew that I had to get my fears under control for the sake of my health "right now", or I would actively make myself worse. I'm still struggling with it, but it's getting easier. Stress is the devil!

When I sat down to type this, I didn't plan to babble on like I have, but wanted you to know that you're not alone and that in addition to all of the wonderful support you've gotten here, yet another person knows how you feel and is pulling for you! Hang in there and try to enjoy every second of every day!





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