Hey Debra,
Listen, it is not your fault and there's no need to feel embarrassed.
Angry, yes, disappointed yes, which might be actually ...good for you,
as now you are emotionally charged to pursue this in much better way.
It reminds me what I went through years ago (I called it the perpetual medical merry go-round, riding medical "clowns", dressed in white jackets, wearing stethoscopes and big red noses, instead of horses and ponies,lol!), however, I turned all the frustration and anger into a passion for creating optimum health for myself and others.
I'm sure anyone with the motivation and passion to do the same, will stand a much better chance for improving their health substantially.
I'll review again your posts in detail and see if I can give you some ideas.
Meanwhile, you are most welcome to post again, add any more information and comments,
or if you prefer, feel free to message me any time.
Wishing you well.
Niko
Thanks Niko
Sorry for my outburst of pure anger. You know, I was making some leeway until she read that neurologist report and then the pathology. Then she just changed her whole demeanour and pushed me out the door almost.
I am determined to never again walk thru the door of a conventional medical practitioner. I have wasted thousands of dollars on these fools and they are not getting another cent nor a minute of my precious time. I'm going to I find a reputable naturopath in our area and try that avenue. Surely there is someone with some insight and ability to look between the lines??
Thanks again Niko
Take care,
Debra.
A neurologist is not qualified at all to treat an endocrine disorder. Mine looks at me like I am an alien from saturn. I teach him. Now his son is on growth hormone.
There are competent MDs - and that one should have disregarded the neurologist until she made her OWN assessment. He may have had a bad day and just put crud on paper - and made a mistake.
If you went to a normal endo (aka not a pituitary endo) then they don't know sh!t about pituitary hormones anyway. So find a university endo and try there if you care too - even then you can get a conservative doc who will go by numbers only. It is as if they can look at paper but wear blinders when observing the patient. I used to ... observe that to them.
Elevated ACTH is likely a tumor (and it may be in different places) so you have to really find a competent doc. Do you have a primary doctor who can vouch for you?
I was labeled a liar and difficult patient - so been there.
Hi rumpled
It's down right ridiculous isn't it! She literally was amazed at just how dark my facial mask is and said "wow", now that's an Addison's mask. One read of those results and that self opinionated jerk of a neurosurgeons letter and she changed it to " you are just a tanned person who needs to stay out of the sun!" Funny that, seeing how I work in a gaol and sleep when I'm at home and it's the middle of winter here???
My primary doctor is the lovely lady who had kept referring me on trying to get to the bottom of it all. I'm so embarrassed that she received that ridiculous letter from neuro jerk too. The reason I went to him is because Lisa, my primary Dr, was concerned that due to my untreated encephalitis from the CMV, I may have had some major damage to areas of my brain. The MRI I had to take to him showed multiple areas of calcification to my dura and several small flares and one significant intensity. Jerk head asked me had I had a head injury and when I said no he said I had to have had. I think I would remember that?? The large intensity possibly a stroke but hey it hasn't hurt you in anyway! I actually remember when that occurred. I feel it was the day I had very low BP and then brain fog the worst id had. From there on for a matter of weeks I couldn't get my words out properly and spoke almost back to front at times. It resolved mostly, but I still can't respond as quickly as I'd like.
Anyway, I'll keep searching for my answers and try to get a solution to this situation. I'm so angry with everyone at the moment. Even my husband for agreeing with the Endo that I know too much and making things worse than they are!! Grrr. If they won't find out what's wrong with me then I have to!!
So dig away I will,
Take care,
Debra.