limbo paranoia

[IUMOM2]

During your quest for a dx did any of you start to feel paranoid about your doctors? I do. In a way. I don't feel like they are out to get me but at times I've felt as if maybe they are talking about me. I've been at this for four years now. I've seen 9 neuros a few other specialist and at times I've been treated horribly. You can read some of my story somewhere here.

One thing that has made me feel this way is a few months ago my Internist was very patronizing. Gently telling me that I may have to accept they would never find out what is wrong with me, and that I seemed anxious. A month or so ago my Rheumatologist went on a rant about how I did not have MS, he knew what MS looked like. He proceeded to tell me that I'd been to countless doctors and no one had figured me out and that I would just have to get on with my life. Their offices are in the same building and their treatment was quite similar. Hmmm? It does make me wonder.

I think it's just the endless search we have to go through to even find a doctor willing to help us. So many are dismissive of our sx.

Anyway I do sometimes wonder about my mental health when I start with this line of thinking.

Thanks for any input.

[Deb61]

What a terrible predicament!  I hate that you're mistreated.  Do you have anyone coming with you to appointments?  My mother would nail someone with that kind of patronizing tone.  

I was in limbo for many years, too, before my diagnosis.  It took leaving the area I was in, and traveling 100 miles to a different neurologist.  Now, I trust no one else and still make long trips to see him, but it's worth it.

Deb

[Fluffysmom]

Oh, yes, I have felt that way, especially since my PCP and neuro #2 were kind of friends; my PCP referred me to her.  It did not go well with neuro #2, she thought a lot of my symptoms were in my head.Then my PCP prescribed a med for my tremors that made all my symptoms worse (and was sometimes prescribed for anxiety), and I was in hell and believed the worst.  

I wrote her a letter, and had a friend come in with me to my next visit, who vouched for the fact that what I've been going through is very real, and that I don't suffer from anxiety.
My PCP said that she already believed in me and was behind me all the way, and was sorry that neuro #2 had dropped the ball; maybe she's burnt out was one thing she said.  She ordered my repeat brain MRI and sent me back to my ophthamologist, in the absence of a neuro to take care of my symptoms.

It was good to face my fear and overcome it, or at least make sure the facts are getting through, even with questionable reports from lazy neuros.

Now I've been having my file passed around at the teaching hospital where I wanted to see a neuro, and ended up with her referring me to a MS specialist.  Then I find out I can't go to MS specialist without a neuro thinking I have MS.  I faxed all the old neuro's chart notes, recent brain MRI showing lesions, my Timeline of symptoms, recent EEG, and a list of what I've lost due to my health issues.

I just keep calling and politely checking in to see how things are going, and letting them know that I'm not going away; that something is truly going on with me and that I need to find some answers.

I fight the feeling that I will never get anywhere because of what those first two neuros wrote.  My ophthamologist doesn't really look for answers, he just says I should see my MS specialist.  I'm looking into seeing a neuro-ophthamologist.

It's a tough fight, and I've been at it for only a few months.  I can't really understand the depth of what you feel, but I do understand where the feeling comes from.  Try to hold your head high and know that if they ARE conspiring, they are being very unprofessional.  It's not you, it's them.  You just keep looking for your answers, and we'll help prop you up when you need it.

Don't let them pound you into their mold, or make you question your mental health.   Or, go see a therapist and get documentation that the only issues you have are from the frustration of being treated dismissively for years by people that are trained and paid to help you.  Or if all this is causing you stress and anxiety, you can get past that so you can return to the fight with a calm determination.

Now, if I can continue to take my own advice, we're in good shape!  :o)

I think it's normal for us to feel some doubts and paranoia, especially when we've been in Limbo for a long time.

Kathy

[santana8]

Hi, I haven't talked to you much, but have read a few of your post!  I'm sorry that I cannot remember a lot of the details though, too many people to keep straight sometimes, and my memory gives me some problems sometimes too! I would like to know more if you feel like giving me a summary of your journey!

Yes, I have felt this way, and I too was treated awful at the beginning of this, not believed, and passed off for crazy! I supose my 15 year history of being on SSRI's and anxiety meds didn't help me convince them!! LOL!!!! But I knew that I wasn't crazy, and I knew my own body and I knew that something was teribally wrong with me, so I just kept on pushing!

I am still stuck between ADEM and MS, and I have no clue for how long, it has already been two years. Finally, eight months after the onset of sudden vision dysfunction, they finally done a visual field test which showed a visual field defect, and an MRI which showed 10 lesions in my brain, then they believed that I coudn't see, but the abuse I endured to get to that place you would not believe!

There are times when I still think people think that I am crazy, even family and friends, eventhough my family was supportive, I think that they too thought it was in my mind, because of what the earlier doctors was telling them prior to the testing!

I struggle with distrust with everyone, and have since the attack! I felt that My family who knew me the best, should have known that this was real, afterall I did not have a history of making things up, so why wouldn't they believe me? Well, because the doctors were telling them that my vision was 20/20 and that it was anxiety, one even said histerical blindness!!! Well in all fairness, I probally was histerical, I was losing my sight and no one believed me!  This was so scary!

As far as my doctors now, none have even suggested that it is in my mind, but I wonder sometimes If they  think things like this.  I think the whole negative experience gave me some kind of complex about being believed!  I find myself getting very defensive if anyone even brings up what happened with these earlier doctors.  This is something that I am having to work through in my own mind, and it is hard because my trust has been shaken!!!

~Santana~