My Doc is also looking at my one of my meds I take. He is very suspicious because my symptoms are disproportionately more severe than the lung damage would warrant. The med is Zonegran. It is the one that helps with the skin pain of fibro. And I started it when the symptoms became severe. I just remembered this very recently. My Doc told hubs during golf last night he would dig further and get with my rheumatologist to discuss it.
I received my results today from my cardiologist. I have diminished lung capacity, BUT, since I have smoked my last cig a week ago, I have in effect stopped the progress of this Obstructive Lung Disease. AND it is reversible!! My heart is perfect, I was just not getting enough oxygen when stressed.
So now I keep using my inhaler and re-test in 6 months. I also start rebuilding muscle and endurance that I've lost from being sick so long. It's time to let the pain be there and go on doing what I need to do.
I don't think most people get such a clear signal from their bodies that they are going down a road that ends in serious disease. I am eternally grateful that I did.
I've had Sicca for some years now and as it progresses your organs get less hydration. I wonder if there is a connection to the whole breathing, blacking out things. Do lungs get dryer and that could be effecting them? I guess it's time for more research. Will give me something to do while waiting for the tests.
Had my appt with the cardiologist yesterday. Taking two routes. Stress test, looking for an electrical problem. Second is lung capacity testing. That one worries me most. My breathing is progressively worse, the weakness in muscles is coming on very quick. Heart rate is 56 - 60 bpm and doesn't accelerate quickly enough causing dizzyness, visual auras, un balanced and blackout. Can only walk at a leisurely pace now, no hills. Out of breath within minutes of exertion. Using an inhaler now and down to 10 cigs a day, from whole pack. Worried about the lung tests because my Father has COPD. The nurse will be calling me for times and dates for the tests, hope it's soon.
I had the tilt-table test, was fine, just mild syncope. But, and this always seems to happen, I find out today when I went to doc about the thyroid that during the test my resting heartbeat was 58 and highest was 98.
So, my doc ruled out any thyroid changes that might have cropped up and instead said, because of the slow heart rate, your going to a cardiologist to see what, if anything, is going on with your heart.
So that's where I stand with the whirlwind of specialists I've seen and have gotten incidental diagnosis from. I'm thinking, what can a cardiologist find that has nothing to do with the heart. At least that's the pattern so far.
On the good side with all my GI issues resolved. I have notices that the inflammation in my back and hips has really improved. So much that I used to take a high dose ibuprofen and a muscle relaxer 2 to 3 times a day. I am down to a couple of ibuprofen and maybe one muscle relaxer per week. Quite the change if you ask me. I haven't even taken a pain killer for the fibro in awhile and I plan to cut back the de-sensatizing med next week and see what happens. I'll know right away because my fibro pain is pressure on skin. I haven't been able to use a bar of soap in the shower for many years.
It really upsets me that if I offer a different opinion from the norm(on the forum) that it gets completely brushed off by some posters who must think their opinion is more valuable than mine. Just because someone has a diagnosis with a condition unrelated or related to celiac, doesn't make that diagnosis wrong or frivolous.
I do not go looking for things that are wrong with me. Alot of my conditions are actually found by accident.
Because a particular issue seems to bother some, I will use it as a Case In Point.
It is a diagnosis of carpel tunnel. I got this diagnosis by accident. I had been having some blackouts and taking some severe falls. One fall was particularly nasty. I went to my general doctor because my neck was really hurting. He ordered an X-Ray. He also made me an appointment with a neurologist to try to find out why I was backing out. We'll, my neck was fine, although they also saw a cyst on my thyroid, which I than went to my Endo about. But I also had the appointment with the neurologist. He tested for seizures and pinched nerves. Low and behold, during the EMG for nerve testing, he discovers carpel tunnel during the second part of the test which involves electrodes.
So my point is, not all diagnoses are just to placate the patient or are frivolous as some may think.
Also some may have knowledge about vitamin supplementation, some know the partular blood tests for a full celiac workup. I don't give my opinion about these things because I am not knowledgeable on those subjects. I do offer my opinion on physical symptoms that I have knowledge about. So are all of the opinions useful? Yes, because celiac is not a clear cut disease. It can effect many parts of the body and mind. There is NO one opinion that fits all.
Yup, the EMG on the left arm also shoes carpel tunnel. Now I match which is good because I love semetry.
I gave my daughter a hair day at the salon for her birthday. We are going today, I'm very excited for her and to spend some time with her. She works 14 and 10 hours days 6-7 days a week so we don't get a chance like this very often. Happy Memorial Day to everyone. Be well.
So I finally finished the sunroom. It looks fantastic and I haven't let man nor animal in yet. You know how a husband can wreak a room just by walking thru and the dogs leave nose prints on the windows. I just need the rest of the day to enjoy then the doors open. I can hardly move tho. Every muscle, joint and even skin hurts but it's worth the price. When I recover I will do the kitchen. Have an appt this afternoon or would go to bed. Good thing is I am holding off the depression but at the same time continuing the mania. I think I need to eat now, I can't remember if I ate yesterday or not.
Interesting thing happened on the way to my depression. I was in bed. (of course) and all of a sudden, with my head under the covers crying, my husband rolles in with the carpet shampooer. Dang, kicked out of bed. I believe he did it intentionally, I know I would have.
Anyway, so I'm walking thru the house and WHAM, the sunroom needs spring cleaning. I mean head to toe. If you are OCD like me you know what an undertaking this can be.
Starting with the ceilings, the fan and light, on to the walls, blinds, windows, floor boards, vents with new filters, and finally a good vacuum followed by a double carpet cleaning.
Now with it brand spanking clean, everything going back in needs the treatment.
Here we go: screens vacuumed and washed, pictures dusted and re hung, couch vacuumed and shampooed, end tables and coffee table washed down and polished, desk washed and polished, tv washed down, decorative pieces washed and dried. Everything put back in order and one last swipe at the light switches.
Now no one is allowed in lol. Ugh. I'm exhausted. But thanks to hubby who got me out of bed. I think next will be the kitchen. Lord help me!
I stayed in bed all day. I am so tired of always getting more and more issues with my health and there seems to be no end in sight. I know getting diagnosed is good, knowing the name of what is going on is freaking wonderful, but, it never ends. At this point I'd rather my doctors just say your screwed and leave it at that. I try so hard to always be positive, smile at everyone and hide what's going on. I'm pretty sure I'm just on the backside of a mania, I know what to expect, I know it will eventually pass but I also can't stop from falling in the hole. I just had an eeg done, I'll get results on the 25th. I have a tilt table test on the 31st. I just feel like giving up. I think my body is just not going to hold out much longer and at this point it really doesn't matter.
Had the emg and definitely carpel tunnel. Are you kidding me? Does this medical stuff ever let up. I'm a bit discouraged, but, one more answer is always good. I'm still smiling and it will still be another wonderful day in the life of me.
I have a few tests coming up. A tilt table test, an EEG and EMG. These are to check if my syncope has advanced and the others are to check for neurological issues. For me it's arm weakness and blood flow issues. The more I know, the more I can do about it. I am hopeful for answers.