This Is Why I Cant Stand Doctors.

[CharmedLinz]

Ooooh boy does this topic hit close to home......as it seems for most of us.

I totally agree..... KNOWLEDGE IS POWER!!!

You shouldn't be afraid to see what's on your MRI..... though I do understand that it can be unnerving since I see a lot of things that to me look "oooh that can't be good"... but I don't know what I'm looking at.

So... Pick something to look at, research images on Google..... gosh Docs should sue Google for putting images out their for patients to research.

This is why I say I agree with the POWER part.

I've had 4 MRI's.... On the 2nd one before I was diagnosed with POTS I thought I saw what was a minor Chiari Malformation.

How did I know..... well I have all the symptoms so I started looking at MRI pics of Chiari Malformations, doing measurements and making marks on my images.

So then I brought it up with the Neurologist I saw at the time. The report said nothing, but he put the disc in and said sure enough it's very very minor, not really measurable but it's there.

I've since had 3 other Doctors agree.

The problem becomes when other Neuros don't look at the images and only the reports, or when they don't believe in "minor" Chiari problems.

Or how about when the Radiologists differ completely in their opinions. My 3rd was read by an interventional radiologist, he saw the Chiari as noted, then the 4th radiologist didn't "no chiari malformation seen in 4 MRI's".

The point however is that I sent my both Reports and Images to a leading Chiari center and they think it's significant enough with my symptoms to order specialty testing and a special type of MRI.

Even there though I know I'm going to have an issue, because if you read enough about Chiari and read stuff on the web pages of the 2 top leading facilities the only way to really get a good view of how bad a chiari mal. is to perform an "Upright MRI"

This makes good sense to me....... GRAVITY people..... GRAVITY makes a huge difference.

But the special MRI place is doing mine.... yup lying down.... so we'll see and I will question them until they zip my lips.

The health system is broken, and I don't mean in the sense of the way it's done here in the US. I mean it's broken in that Doctors have the ability to control our lives.

Why do we have to interview to become a patient and then lose the ability to have any say or control in our health.

It's like interviewing for a job, you get it, and then you can never question the boss..... accept the boss is getting paid, not us, and it's not the boss's body, that belongs to us.

Get everything that pertains to YOU, it's yours, it's your life and your body.

I am very very BAD about confronting Doctors in person. I have no problem with writing letters.

There are sooo many things that go wrong. I went to the ER in May, got bloodwork, they said it was FINE.

I got my results later that week.... HIGH Platelets, HIGH white blood cells, HIGH Lymphocytes, LOW Neutrophils. HIGH Creatinine.

Don't know how that's FINE........ it was bad enough that my Docs made me re-do the labs to get a CT because of the HIGH Creatinine.

The HIGH Platelets and HIGH WBC's were bad enough to have my Hematologist order a Bone Marrow Biopsy.

MY PCP is very confused on how I left the ER being told I had a virus...........yeah right, a virus that starts with low blood sugar.

We KNOW it was either a Mast episode or Adrenal Crisis.

My PCP just said I don't know how they can say Virus, with a Virus it's usually your Neutrophils that are HIGH, not your Lymphocytes.

With KNOWING comes POWER...... I found my Chiari Malformation.... I found the Doctor and ordered my TTT which got me my POTS Dx..... I found my Parathyroid problem..... I found my Insulin problems.

Everything that I do have in my diagnosis folder, was by my own POWER, research, and finding someone to do the testing.

The way this works is NOT right. What happened at my Birth will forever be a mystery as my records are gone.

I'm 31 and just now that I'm sick is my Mom remembering things about my birth. We knew I was born blue and hypoxic but that's all she was told.

Then she was told I had Neuro-Motor Incoordination which kept me from walking until I was almost 2. That Diagnoses does NOT exist, plus it was ignored that I had more skeletal problems than just a weird left foot.

Now she's remembering that they kept me from her for 6 hours. That they kept us overnight without telling her why.

Now that we are suspecting MITO, the fact that I had trouble feeding for the first 18 months is coming up. The fact that I have tooth and jaw deformities was never an issue before now.

We just discovered that I have a sacred dimple. My Mom knew it was there but never knew what it was.

Apparently it's a big enough deal with a borderline Chiari that my Mom should have been told about it when I was born and she wasn't, that it should have been thoroughly checked.

Only now at 31 years old is my PCP asking to see it and making sure that it stops and isn't a Fistula.... Good thing it's not, because that many years with a Fistula could have been really really BAD.

Enough of my Rant.......... Dani you have a private message

[issie]

Charmedlinz

Let us know how it goes with the Chiari pursuit. I have a drop of 3 with mine too. I'm trying Diamox at the moment to see if that makes a difference. So far, it makes me feel like I've taken a tranquilizer. I think I need to take less in the day time. Going on day 4 - I am having a bit of a time with the sulfur part of it (sensitive to sulphur) but, so far, still tolerating it. I do have less pressure feelings in my head and neck. For some reason the ringing in my ears is worse though. I figured out yesterday that you HAVE to use soda with it - because it causes you to become ph acidic - so after a drink of water with that then I felt better. I wonder if ph balancing would help all of us.

Issie

[roxie]

Ugh, I so feel for you Dani & chamredlinz. Keep us posted.

I have a vaguely similar situation. For a long time I had a specialist and a pediatrician. The specialist always referee everything to my pediatrician, who never really believed POTS but my specialist kept insisting hes a good dr. In a smal town you don't have much choice. So (this was like 10 yrs ago) my specialist had me do a contrast MRI for my spine. My ped said it read fine. When I turned 18 I had my records turned over to a new dr, my mom read the MRI report which said I had numerous spots on my ovaries and pelvis, like 3-4 . It said they'd assume ovarian cysts because of I have a history of them. Plus I had a 6 cm spot between my the top of my uterus & bladder.... They decided to call that a cyst too.

Doesn't that sound strange? Bladder & uterus....must be an ovarian cyst even though it's not on your ovary????

Ive been being treated for gastroparesis is improving some but any pain below the belly button isn't. In passing my newest dr mentioned pelvic congestion syndrome. In the past few months I've realized below the belly button IS pelvic pain and although it's always been written off as IBS my instinct is saying it's not. I'm going talk to him when I go next week.

The worst pain in my stomach is right where the bladder & uterus are. I'm guessing that 6 cm mass is still there & it makes me so mad.

I've been reading about pelvic congestion & its also the area of the largest ovarian vein, the one that runs from your heart to the ovaries.....could I have a massively gigantic ovarian vein????

Any who, I'm trying to find out now that I have a dr who listens and will refer me to ppl that can help.

Good luck guys.

[Debbie Rose]

2 years ago I had a MRI done when my MD thought I has MS. It showed 2 lesions that "could" indicate MS...Went to 2 neurologists-one said it was atrophy but did not say why, what to do-nothing...and the other said it was a result of a severe concussion I experienced as a child. Again no instructions,concerns..even though I still had severe fatigue, numbness and less sensation in my feet and left leg, was off balance, had double vision and urinary hesitancy

...Moved fron MD to NC saw a specialist in MS-new MRI-still had lesions...told I didn't have MS-went thru ALL the tests (blessing there) but no further explanation except "benigh painless migraines" WHAT?? Ya gotta laugh sometimes