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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: The Chronic Fatigue Element

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › The Chronic Fatigue Element › Reply To: The Chronic Fatigue Element

July 13, 2012 at 7:53 pm #2598
Give My Daughter the Shot!
Participant

I never looked at the ‘weird changes in nails’ post because I didn’t think I had any weird changes to speak of – especially in the scheme of things. I, too, have vertical ridges on my nails. How weird. At least the vertical ridges don’t hurt. Of course I wouldn’t have noticed that. LOL! I will look at that post now and chime in if applicable.

I wouldn’t know what toxins to test for. I need to prepare very specific diagnostic requests with great strategic precision. I am PTSD over needles and have to group my bloodwork.

I need to group other diagnostics, thoughtfully and carefully, so that I can be as effective and efficient as possible.

It’s tough to do this without any formal medical training. Especially, when I feel so horrific every day. There’s another part of me that still doesn’t want to believe this has happened to me. It’s a ‘tall order’ for me to figure out how to orchestrate all of this – especially without supportive doctors. That part is very hurtful. My genetic doctor told me that I would have to educate my doctors and I bawled and bawled at the notion of returning to the ‘scene of the crime’ where I had been so dreadfully mistreated. It seems absurd to think that I would have the energy to break through the trauma that has been inflicted onto me with my meticulously/carefully/thoughtfully/educated/thorough/captivating/sensible sales presentation for which tests I require and why. Then, if I’m able to get the diagnostics – I’ll have to figure out how to ‘read’ them myself. Then present results back to doctor who probably misread them in the first place. Seems pretty insane to me. Plus, I’m not feeling so good. I mean, if I could do all of that – I’d be at work and living the life for which I am accustomed to – not being poor, sick, and miserable.

Thank you, again, for your info. When God gives me the strength to do so, I will review everything and begin to make sensible order of it so that I can take it to my doctor. I just have to get myself psyched and be strong. Worst part, IF I were able to get myself psyched – it wouldn’t be ‘on cue’ but random. There is no telling if I’d be ‘on my game’ at the point my doctor enters the exam room. If I randomly flounder and brain fog – it’s potentially a wasted appointment. Know what I mean. I really need to ‘hold my own’ or the doctor senses weakness and pounces. In this case I hear things like; I’m depressed, it’s in my head, get on with my life, my bloodwork is fine and no reason I should be acting this way, etc. So so much has to align for me to accomplish anything at all, it seems. I truly hate that! At the mercy of a body that randomly and severely betrays me. My doctors appointments now are like going into battle. I’ve never had that before.

I’ve thought that I’d be better off preparing a wrongful death suit versus trying to acquire treatment. It would be a better use of my very limited resources. I don’t mean that in a pity way but more in a DOCUMENT EVERY LOUSY THING sort of way. You want to neglect me, I’ll document it. You want to insult and mistreat me, I’ll document it. ETc. I detest what I am going through and hate to know that other people feeling this bad are going through the same thing.

Anyway, if you do come up with relevant toxicology testing, let me know and I’ll see if there is any chance I can find a way to present, justify, and acquire the test. I’ve wondered about mould since I had been exposed a few years ago. What toxicology are you thinking? Candida?

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