trying NOT to talk and/or mention my sx.

[RedFlame]

I don't know about any of you, but I have been working on not talking about anything regarding my neuro issues for at least the past 3 months.  I work at ignoring my own symptoms while being careful not to: wince, fall, tip-over, say "Oh God that hurts, "I can't see the floor", "I can't tell how far away you are" or even discuss doctor appointments or tests.  I take my medicine as quietly as I can and work around the house.

Why"

I sometimes think even my family thinks I am nuts.  Sometimes I think that I am nuts too.  I feel embarrassed and stupid that I should be able to handle everything better.  Sometimes a family member says "why haven't you done ____yet?", to which I respond: "I do as much as I can but I haven't been able to get that done yet.  I feel like other family members would be a better patient than I.  

It's not that my tests come back negative either, it's that they haven't yet been conclusive.  

So, like all of you I am here in limboland not knowing where I fit in.  I want to know what this is so I can fight it with the help of a doctor(s).  

I just want to stop talking about it or even thinking about it.  How do you deal with this stuff?  What do you think"  

Thanks!

[RedFlame]

You are not ranting at all, I think it helps all of us to listen to all of our stories.  Our stories are so powerful----and I think that together we become assertive and empowered.

We need to see each other through this, I'm not sure how but we can stick together in all this pain that we are in.  I have PTSD too (from a different source), all of this trauma has worsened my symptoms as well as my depression.  Actually,  talking about the anger lessens the depression.  

Lets just keep this up---we will make it somehow  

[silkcut]

Red Flame...that didn't read like a rant, more like an accurate assessment of the situation many of us face. I agree about misogynistic docs. BUT, I do know two men who have had the same treatment.

Having said that, the two men I'm closest to have had stunning medical attention this last year (in one case the ER docs called a top national consultant away from a dinner party 200miles away at a weekend - for something that was actually far more minor than anything I would go to the ER for). I know if I consulted a doc about the same sort of things I would be dismissed and ignored and diminished.

You're right - this IS real trauma. QED my dx with complex PTSD. There's a tacit understanding that the way I've been dismissed has contributed to this condition.  

I expect a formal neuro dx sometime this summer - when i can summon up the courage to see the neuro. I too have that plan to send copies to each of the so-called doctors who have been so vile to me, together with a request for an apology!

But really, if I never had to meet a doctor ever again it would be too soon.

>>>uh ho...sounds like I'm on a rant now!

samxx

[RedFlame]

I am so glad that we have been able to post our frustrations and share similar horror stories.  

I too believe that the 'trauma' we are going through each day is another diagnosis of it's own.  I believe that the medical profession is incredibly misogynistic.  Illnesses that are predominantly women are often 'brushed under the rug', minimized, or just plain ignored.  Then there are diseases that are predominantly women but are said to be more severe when the patient is male.  geesh!!!

There was a case a few years ago when a young woman went to the emergency room at Cornell U. in New York.  She 'claimed' to be suffering from 'neurological type' symptoms including muscular twitching and 'jerks'.   The doctors basically blew her off but allowed her to remain the in the emergency unit, even restraining her becuase of her 'behavior'.  The docs assumed she was mentally ill and ignored her.  She died of Serotonin Syndrome while in restraints.

My point is that if you even show an inkling of having 'depression' or 'anxiety' issues they seem to immediately put up a wall.  The first question I get is "where do you get your Effexor?"  I think I should start telling them I get it from Walgreens.

And to those of you that have lost friends and partners I am soooo sorry.  

Someday we will have our definitive diagnoses.  I think that each of us should fax copies of that diagnosis to every doc that would not help us.  Sadly, that won't heal the bruises we already have from the medical field.

I am, really ranting aren't I-----I just am so angry and have nowhere else to rant.

Thanks for letting me 'go off the deep end'!!  :-)

lois

[deebrown30]

I think u hit the nail on the head...so sorry about your friend.  it is  a shame that we all must make our doctors to believe us.  They should always believe their patients until they have a reason not to. I think most of it is a money thing though.  People think they can make a lot of money in the medical field and do not think of the fact that, we as patients, put trust in them, basically we put our lives in their hands and that is a heavy load for anyone.  There are good doctors but far too many bad ones.  Take care all!

[Londres70]

Merci/Thanks to all for your welcomes.  

[silkcut]

Hello and welcome Londres

I'm sooo sad to read about your friend. I wish the medical fraternity would learn that there *are* more hard to dx diseases than they're taught.

I think you and Dee are spot on: it's a combination of things which add up to some very poor service for far too many of us.

And, Red Flame....I'm very sorry that we've gone off at a bit of a tangent on your post, but you've quite rightly stirred a hornets' nest here!  ;-)

bestest
sammxxx