Giving up..

[zenhound]

On May 10th I saw the neurologist again for a follow up appointment.  We went through the MRI films (jpgs? whatever) and discussed all the test results.  The only thing she can diagnose me with is trigeminal neuralgia--and even that, she emailed me later in the week to say she had changed to a designation of atypical facial pain.  

The neuro-opthalmologist visit a few days prior was a huge bust.  I aced the visual fields test (despite having run into a tree branch that I had no idea was there a few days before).  The neuro-opt himself was a bit of a weenie, asking questions and then interrupting when I answered.  He sort of shrugged and said he guessed we could try an ERG test, which we scheduled.  After looking it up online it seemed both pointless and a little too Clockwork Orange-y so I cancelled it.

So I have decided, for the moment, to give up.

I still believe that there is something wrong with me.  I remember how I felt before December and it's definitely different from how I feel now.  There are days now where I'm a moron, where the slightest thing can entrance me--even uninteresting things like the woodgrain pattern of a desk or the writing on a box of tea.  Most days when I wake up my right side is numb but it goes away when I stand up and walk around.  Of course, when I do that, most of the time my feet hurt with a deep ache that either fades over the course of the day or that I notice less.  When I've had a drink I notice the near-constant ringing in my ears a lot more, and the fact that my left eye closes differently than my right eye is much more pronounced.  I continue to have bright spots pop up in my vision and have had a major increase in floaters.  I have a chronic feeling of something being tied around my left knee.  I have deep pains in weird spots, usually in my left forearm although it varies.  The muscle twitches have almost entirely stopped though, which is something.  

Despite all that, I think I have to give up.  Whatever this thing is that has taken hold of me has beaten me.  I don't feel any particular shame in that.  I'm just left with a feeling that I've been outclassed by something I didn't even know I was fighting.  I don't have the strength of conviction that many of you must have to keep fighting after years.  I doubt myself and my own experience, because frankly I don't really believe in subjective experiences.  I've always been a skeptic who would roll my eyes at ghostly encounters or religious fervors because they're unverifiable but also because our individual experiences of the world are so likely to be flawed.  One little synapse misfiring, one encounter with a toxic substance, or one bump on the head and you think you're spouting divine secrets when really you're just gibbering to yourself on a bus.

So what now?  I'm going to pursue the psychiatric option.  That's probably controversial here since so many of you have been dismissed as hysterical or crazy (many of whom later ended up with a diagnosis).  I'm just not sure what else to do.  Lately I have been feeling like I am on the border of a spectacular mental collapse.  It's entirely possible that this is being driven by the health issues.  But given my history of depression, it also seems possible that it has decided to take a new and insidious form.  Who knows.  I'm going to try to find a decent shrink and see if they have any ideas.  This is where the preponderance of the evidence seems to lead after so many normal test results.  If a 3T MRI were an option, I might look into it, but it's not.  So I'll try this first and go from there.  

I suppose it's entirely possible that a psychiatrist will wonder what the hell I'm doing in their office and I'll be back at square one.  And if that happens I'll just wait.  I suppose if whatever has been happening to me is both real and significant, it will come back in a way that can't be ignored or dismissed.  

Anyway, sorry this is long.  Just thought I'd update here since this forum has been super helpful both generally (in reading other posts, health pages, etc.) and specifically in your replies to my posts.  Thanks all!  

[lovemy6monkeys]

I cannot add to all that has been said...but I will offer you some ((hugs)). I hope you do not give up but just take a break. This Limboland is not very fun.

~Jess

[sunnyinthesnow]

you sound like so many people in this forum. you sound like you have ms. don't give up yet. if you know what it is, you can do something about it.

[Audrey_M]

This is an amazing thread. It's hard to choose from all of the gems presented.

Zenhound, you put forth your thoughts and feelings so eloquently. There are so many of us who have walked in your shoes.

Lu hit the nail on the head when she asked you to look at it as taking a break instead of giving up. Tonya is absolutely correct in saying that it takes time for things to appear on an MRI, not to mention in CSF.

I took a break too, but started on the journey again. I can no longer ingore the symptoms. How long the journey will last until I get some kind of diagnosis? I don't know, but the doctors now are not dismissing the multiple lesions on my brain.

It probably would be beneficial for you to keep some kind of timeline. If your symptoms truly go away, you will know it. If they flare or change, you'll also have that information for reference when you need it.

Trust in yourself. You know your mind and your body like nobody else can.

Enjoy your break from the roller coaster ride of doctor's visits "for now" as you wrote.

All the best to you.

Audrey

[tonyad]

   I'm looking back at my post..Oh My Gosh...Please excuse all my spelling and Grammar errors.....Boy, it's getting bad
hope you can make sense of a couple of my sentences...Sorry...

~Tonya

[tonyad]

   Hi there :)
First off let me start off by saying that you write w/ such restrained beauty.
I too feel that YOU (not the doctors) are making a good decision. this will help both you, to see that this is a phsychiatric issue but rather something that is slowley coming to a head.

     At least if/ and when you decide to pursue this once again, you will have had this part layed to rest. However, if you do get any cognitive testing done, then this is also good for you because it is showing a loss in cognition.

      I wish you well, and hope the best for you. It can and usually does (see Health pages)take a while for things to appear on an MRI. Not to worry though, Because everythings going to be alright!

Take Care,
~Tonya

[zenhound]

Thanks for all your comments.  Man, this is the most supportive corner of the internet.  It's awesome.

I don't think my HMO has any neuro-psych folks, which is why I'm just going to talk to a regular psych.  If they do have them I've not found any trace of them anywhere.  

I've thought about switching from HMO to regular insurance since our open enrollment is coming up, but the plans we have to choose from just suck.  High deductible so I'll probably end up paying near the entire cost of an MRI myself which is not possible on my income.  Oh well.

[supermum_ms]

Hey Zenhound,

I sure understand where you are coming from, i dont think your problems are psychological but i do think getting a psych evaluation and if possible a neuro-psych assessment done, would be a very good idea. I now have proof its not psychological from getting my mental health evaluated, and i also have proof that my cognitive issues are real after the neuro-psych assessment. That alone has made me confident that what is happening to me has nothing to do with my emotions and all to do with my brain!

I'm in limbo, part of me wants the answer but another part is so demoralised by the process that its hard to face again, so i'm not, i'm taking a break and i know thats probably in my best interest, i'm still sane and i intend to keep it that way!!!!!!

Please dont get to the point of thinking that this, as yet un-named demon, has beaten you, its within you to fight it, so take a break now and get back in the ring when you've restored your strength enough. You know your self better than anyone, never loose that knowledge.

Cheers........JJ

[RedFlame]

I'm sorry to hear what you are going through.  I too know that doctors need/want objective information or stats, it makes the diagnosis a 'no brainer'.  

The fact that they haven't yet been able to objectively measure your symptoms is more about their failure---not yours.  Some of the physicans you describe sound utterly ridiculous!  Seems like insurance shouldn't pay for idiots like that.  


Sometimes I wonder if our symptoms have to become blatantly huge before the doctors figure things out.

I think 'giving up' may help you recuperate from this struggle and fight to find answers.  When you are already in pain and then trying to convince doctors it's treacherous.  

My story is of course different, but I am in a place of giving up too.  I am exhausted from this process.  


I hope you will continue to let us know what is happening.    lois

[Lulu54]

That is very well thought out and presented.  The psychiatric route here really is not controversial when it is patient driven.  What we don't like is doctors dismissing patients as head cases because that is the easy way out.  

Rather than thinking of this as giving up, please think of it as taking a break.  You will come back to looking for physical answers when and if you feel that is necessary.  In the meantime I hope meeting with a psychiatrist will provide some clarity.  

be well and stay in touch, ok?
Lulu

[HVAC]

Hey I have felt the way you do. I did not give up and did finally get a diagnosis. I am sorry you feel beat. Take a deep breath and do what you need to do.

Alex

[jensequitur]

One thing a neuro-psych exam will prove is whether or not it's in your head.  I recommend it for people who are stuck in the situation you're in.  

A neuro-psych is a 4-hour evaluation of your cognition skills.  It'll test all sorts of things, from language to object/problem solving.  The psychiatrist can see where the deficits are, and give you some advice to solve those problems.

It's possible that MS is causing some mental problems - it's been known to cause depression, for one.  But you seem pretty sane to me!  Sometimes you've just gotta take a break and rest up.  

Hang in there - come back and let us know how you're doing.