Sunday, April 14, 2013

Pursuing an Out and Out Cushings Diagnosis?

I am not sure if I want to go back to trying to push that envelope again.

Should I do it? Getting the doctors to listen seems very tough. The inability to get an MRI did put me at a stand-still as so not passing the dexamethasone test. Intubation was too risky and I can't lay flat and breathe, though maybe now I'd fit in the standing MRI, I didn't fit in some years back.

One doctor told me years ago, I'd never survive the surgeries and treatments and to live the best life I could. This is one that diagnosed me with pseudo-Cushings based on three different high cortisol readings--high UFCS for those of you who know the lingo and a high ACTH . See Snippets of My Medical Records 

The picture seems to be adding up though.

There's too much that is wrong.

I have never met a woman with as many health problems as me. I spent time around other even super-fat people, and yes there are many co-morbs that come from that, but now we are entering territory where things are getting kind of weird. Even lately I am having trouble with one of my eyes with extreme floaters in it which is kind of scary for someone who is already nearly deaf.

Let's see what do I have on that list.

The weight gain, no periods except very rare unless forced by medication [one this entire year], when I had my initial huge weight gain, I had the purple straie and then some, hair growth--except for Spiro, weakness yes, central obesity--yes, Osteoporosis yes, diabetes, high blood pressure, skin problems, kidney stones, yes.

Add in severe hearing loss, vertigo, skin problems, and the list goes on and on...

There are lesser known signs too. By the way there are no diabetics in the family even among the fat folks, and yes I have the buffalo hump too.

I went through hades to get the hypothyroidism and severe "PCOS" diagnosed. Of course many patients with Cushings have told me they were diagnosed with PCOS at the start. PCOS is weird, you go to PCOS boards and while those women are a little bit fat and with a little hair, they are NOT SICK, many of them are even well enough to be trying for babies! I never have related to any of them!

I tested with HIGH CORTISOL OFF ALL STEROIDS and INHALERS for a few years. At that point in life, I was refusing fearing any more weight gain even against doctor's orders.

But I had to go back on a steroid inhaler a few years back for COPD. I wonder what that is doing to me? What did Flovent and constant prednisone do to me earlier?

I asked one doctor, SHOULD I GO OFF ADVAIR? COULD IT BE CAUSING these kidney stones? Trust me that is a scary proposition with the lungs. Maybe the doctors see this as a zero-sum--where I have to be on that medication. If I am already Cushingnoid, wouldn't that be making it worse?

I saw this video by accident on Youtube. I understand her tears. Read her comments below the video. I wonder if she is being ignored like I was during my weight gain? Her balding head and facial hair, means something is up. Can someone email another off Youtube? I don't have an account there. I'd like to email her and will definitely be praying for her.

I wouldn't doubt it. Why are doctors ignoring me now when I say Kidney stones go with Cushings? How come I only get silence when I say look adding kidney stones to the laundry list of disorders means something is going wrong? There are so many things wrong with me, its getting to the point of absurdity.  I am not sure where to go from here. I've been having some feelings of unwellness this weekend though not a full blown kidney stone attack. I will destroy my liver being on this uric acid medicine too long. Tell me what you think. This has been so long. How many years have I been sick? Since 1994 when the weight gain began and in various more mild ways before then.

Even if I am wrong about the Cushings and they are right about the severe PCOS/insulin resistance, there is something more systemic going on that is taking things beyond that.

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