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[ginger_kitty]

I would hereby like to ask the entire medical world to kindly go fuck itself.

No thanks whatsoever,
An entirely frustrated and altogether dissatisfied patient

Comments

[ginger_kitty]

I visited an endocrinologist to look into my hormone levels, particularly for any trouble with my thyroid. I wasn't tested on that machine, but Dr S was incredibly thorough, and my thyroid has come out to be perfectly normal. I do, however, have a Vitamin D deficiency that she is treating me for. (I've been on 50,000 units twice weekly for the past three weeks, and I am now supposed to start taking 1000 units daily) The vitamin D isn't an underlying cause, but the deficiency does make the fatigue worse. Since starting on it, I can function just a little more normally. Still nowhere near healthy, though.
I also discovered from her that my ANA levels were positive in one of my past blood tests (I don't know how high, or which round of blood tests it was from, as the doctor who ordered it never told me about it). I've been referred to a rheumatologist, but my appointment isn't until mid-November.
Rheumatology aside, positive ANA levels could also point to auto-immune disease. A little frightening, but is gives me something a little more solid to say that I'm not that crazy. Despite being constantly ignored by my physicians, my primary suspects have been "Orthostatic Intolerance" and "Chronic Fatigue Syndrome"......... the latter of which is also known as "Chronic Fatigue Immune Deficiency Syndrome"

[lilac_ambience]

Argh, I understand your frustration. I did look up the Chronic Fatigue Syndrome after you posted about it, it definitely does fit. If it were an auto-immune disease though, would you tend to be getting sick more often as well? (colds, flu, that sort of thing) or is it the body attacking itself that's keeping you quite weak etc?

Acupuncture might be worth looking into just to see if it helps any? I mean if there is no (medical) treatment for CFS anyway...

With the OI suspect, you're drinking 2 litres of water per day, and that's not helping?

[ginger_kitty]

I'm not exactly certain how to explain the auto-immune side of things, but I do know that I have been getting sick a lot more often. Such as the virus a couple of weeks ago, and I'm not 100% certain that this most recent issue was food poisoning (I can't locate our thermometer, but I've continued to feel rather warm, and I developed a deep lung-cough last night that's been returning off and on). I've had very frequent but small colds during the entire summer... I was also never prone to UTI's before, and I get them at the drop of a hat, now.

I've been contemplating acupuncture. Need to actually look into what's local.

I've always been very on top of my hydration. I tried increasing my water intake, and it had no effect. Increasing my sodium helps to a degree-- if I have a serious brown-out, drinking a cup of bouillon or eating some ramen might keep me from doing it again for a few hours, even though I'll still be dizzy and weak.
There are treatments for OI to increase blood volume, but I've been having a hell of a time explaining to doctors that orthostatic intolerance.is.not.orthostaric hypotention. They've been repeatedly looking for OH, even when I explain the differences between the two. Sigh. I've made a very clear printout to take to my electrophysiologist appointment on Friday, and my mother will be accompanying me (in the hopes that if they don't value my opinion, they won't be as quick to disregard someone older).