Have you been told "it's all in your head" and you need to see a

[MissLauraI]

How many of you were told initially that your MS symptoms were all in your head because you were anxious, depressed, a hypochondriac, wanted attention, or whatever?

How did it finally get resolved?

I just sent a request to my neuro for a physc evaluation because I got a copy of his dx that said my symptoms were psychosomatic. If he has made that determination from day one, I am not sure he will be objective with anything that may point to MS or any other problem (other than being crazy) for that matter.

[MissLauraI]

Lisa- Yes that would be preferable huh? Just kick back, talk about your problems, take a few pills and be on your way.

littlebittexan- I like your advice...keep looking for one that will listen. Actually I told my husband maybe I should just go to the psychiatrist because he HAS to listen. That is what he gets paid for. Then he can just relay everything to the other docs that won't listen LOL.

Thanks for the encouragement!

[littlebittexan]

Yes maam!!!  I was told it was all in my head and I did not know my own body.  I told him that I was the only one who had been living in it for the last 43 years so I think I know what is going on better than he did.  Personal experience is a far better educator than reading it out of a textbook!!  Needless to say that was the last time I went to see the arrogant jerk!!  If they can't find out what is causing the symptoms because they are not experienced enough or frankly, lazy or burned out then they should not be taking more patients because we are the ones that suffer the consquences.  Who wouldn't feel depressed with such debilitating symptoms!!!!!  There are still really good, passionate about their profession, Doctors.  Just keep looking until you find one who cares, listens, and asks questions.  You have to be your own advocate who is like a tick on a hound until someone takes note and listens.  trust your instincts!!!  I finally found a great Doc.  Ask others who are in your area who they like and try them out.

[LisaJF]

I spoke with my MS Specialist today and asked him (due to my boyfriend's disbelief I have any disease whatsoever) if he felt I am experiencing a conversion disorder or that some of my symptoms are psychogenic.  I told him that I would be more than happy to be evaluated and would sincerely be grateful if I was diagnosed with that.  At least you can fix that $hit. You know?  I wont mind two days a week visiting a psychologist or psychiatric MD with some antidepressants on board instead of daily injections and feeling my body deteriorate before my very eyes.

I realize it sounds pathetic, but it is actually how I feel.  

He told me "no" he doesnt think that is the case and did not think that initially either during my 2.5 hour exam.  However, I did have a sense of panic wondering if he did feel that way after my boyfriend stated the next day that its "all in your head" comment.  

Well, yeah it is. :D  I am just not sure if its physiologic or psychologic and I'd prefer the latter :)

Hugs to you.

Lisa

[jensequitur]

Thanks, guys - making me feel better!  This was when I was tested as an adult - as a kid, I was at 128.  I think that's pretty typical - as you get older, you test better.

And I feel like I've been smart at times, and other times my brain just doesn't work right.  It looks like I've had MS for a long time, so maybe I've had relapses with cog fog and just didn't realize it.

If the neuro tries to tell you it's conversion disorder, then you should talk to your therapist about a workup.  I only got my neuro-psych after my diagnosis, so I wasn't branded as crazy - although my medical records from my old neuro say "unspecified mental problems due to disease!"

[MissLauraI]

Addi, JJ, Jumpin jimny-

i found out the difference yesterday when i had a phone consult with the psyc dept. at Kaiser and it is like JJ said. The therapist  is there to help with mental issues of depression and anxiety...things like that.

He did reveal that the nuero psych exam would determine if a person has "Conversion Disorder". This is where you turn an emotional problem into a physical symptom...hence you "convert" it. The neuro exam takes hours and has to do with evaluating cognitive issues.

After talking with the therapist for about 20 minutes and giving him a run down on my symptoms, he advised me NOT to request a neuro exam, however. Here is why:

He said that once you are a patient of psych, when a medical dr. looks at your chart and then sees you have been to psych, they will likely STOP looking any further for medical issues, especially when there is difficulty in assessing the diagnosis (in things like MS). he encouraged me to let the neuro run their battery of tests, be patient, and aggressive in my pursuit.

He said none of the things I told him indicated a mental health issue...I could have kissed him!! I was relieved. Of course he said he could not make it definative without a full work up, but he felt I would be looking in the wrong direction unless I wanted to talk about my emotional feelings of being looked at for MS.

So I told him I would not ask for a Neuro exam.

Jumping Jimny this is probably what has happened to you. The therapist said it is really common for a medical dr. to blame EVERYTHING on mental issues without EVER stopping to think that the mental issues are a reaction to what IS going on medically.

So what that tells me is you do get branded in a way by some institutions for seeking mental health help. And my friends that is just WRONG.

After all that is like saying, "Oh your sad and it is making you sick". Not, "Oh your sick and this is making you sad."

It is discouraging to hear that the medical field is so stupid not to recognize that poor health can cause mental reactions.

jensequitur - I am glad that your experience was good. I will ask for one after i have a solid diagnosis (if it is MS) for the same reason. I want to have a baseline too. But I don't want to do it before (like I thought I should) the diagnosis because Kaiser dr.s will just blow me off.

IQ 135- impressive :D
Ever joined Mensa?

Thanks you guys for all your input!! VERY VERY much appreciated. Hope your are having a great weekend...or at least a restful one :D

[supermum_ms]

Hey Jen, hate to tell you babe but if your IQ was 135 you are gifted not high average or were not sure what happen's there because gifted is more than just IQ scores, gifted begins at 130, so you are/were gifted gf!

LOL After I stopped impersonating a gold fish, neuro twit asked if i had changed at all in my temprement, he'd just asked endless mental health q's then said that pearler and i answered yes I have very high tollerance and it takes a lot to get me annoyed but stupidity now pisses me off. Ha he then asked how i was feeling at the moment and i said really pissed off, some how i dont think he got it!

BTW Jumpinjiminny have you ever wondered if you've been type cast because you have a special needs child? What type of assessments have you had to be placed on the medications you take? Dont forget the common side affects and the additional interaction of any additional drugs you take, do they play nice together, are they helping or making things worse? My DS took a drug for anxiety, he started having so called panic attacks but it turned out to be an adverse reaction to the drug, so instead of helping it made things worse. I recommend checking out any medications and their combined affects.

MissLaural the difference is that one is evaluating your mental health and the other is evaluating the function of your brain, IQ etc When i had neuro-psych exam it was no where near as detailed as Jen's, it was only the mini version that took 2 hours, the tester was a neuro-psychologist. Your mental health should be assessed by a psychologist or psychiatrist though you can get a really basic mental health assessment from your GP, i wouldn't recommend the one a GP can do because it doesn't delve far enough.

Cheers.......JJ

[jumpinjiminy]

This question is near and dear to my heart right now because it was during my last flare up this issue came up again. But this time with my GP and therapist. They blamed anxiety, despite the fact I take Cymbalta for that, and baclofen which also helps anxiety. I was heartbroken. I couldn't believe they would even go there.

This was a horrible flare up that affected my breathing, level of consciousness, memory, cog function was horrible. It lasted four to five days solid, then started waxing and waning for another six weeks or better. I'm still having some residual symptoms, but thank God the hypoventilation is over with. I've never been so tired in my life. It was the most disabling flare up I've ever had, and now everyone thinks I'm crazy because of it. Including professionals I've worked with and depended on for two to six years.

I have been through this before. Had a doc that told me he hadn't ruled out bipolar yet after I snapped at him because he kept insisting I was depressed when I kept insisting I was not even close to depressed, merely fatigued. It was THE last time I talked to a doc about my fatigue until this last year, and LO, guess what I'm going through again?

I told my doc I'm ready to give up looking for answers. They cause more stress with their mental health misdiagnoses than I get raising a special needs child. Compared to stress of dealing with the professional misjudgments of my mental health status, my personal life is a walk in the park.

I'm at the point now that I am not even mentioning any of these neuro symptoms to my docs anymore. What good does it do? It just makes them all think I'm crazy. Then my therapist (who is friends with my doctor) got pissed when I insisted this wasn't anxiety but something else. Trust me, an anti-anxiety med at that point in time would have likely knocked me out for 24 hours, or possibly worse. I was already sleeping a good 18 hours a day. WTH did I need an anti-anxiety med for? I wasn't awake long enough to get worked up over anything!

I wasn't even close to depressed before this happened. But over the course of the last several weeks since this event, I've been sinking lower and lower to the point I have to take a xanax or I will cry for hours. Those two were my safe haven. And now I have nobody on my side in the medical world. All of that time and money invested and I get to start over again.

Like I said, I'm absolutely heart broken and just don't care anymore.

[jensequitur]

Hey, chica...  As far as I know, a neuro-psych exam is the battery of tests they give you for Alzheimer's patients and other patients with cognitive problems.  I think I was given the MMPI (Minnesota Multiphasic Personality Inventory) which is a pretty comprehensive test.  It takes about four to six hours.  

Before I took the test, i met with the psychologist, and we talked about why I wanted the neuro-psych exam.  She and I agreed that we needed a baseline for future progression, and I personally was interested in specific cognitive deficits that I'd noticed.  That might have been the psychological examination.  It's just to check and make sure you aren't crazy, you're tracking events normally, and you aren't hunting for symptoms.  But if you're talking to the psychologist, and if they're doing their job, they'll suggest the neuro-psych exam themselves.

If your neurologist even suggests that psychologists aren't good at finding psychological problems, run away VERY quickly.  (Or stumble, or stagger, or crawl!)  

Personally my neuro-psych found that I'd lost 30 IQ points.  Since I was on the high average side (135) before the cognitive problems, this made me about average, so yeah, like other people here have mentioned, it didn't send up any red flags.  But the psychologist noted that I'd mentioned a 'high premorbid IQ' - at least I think that was the phrase - and that I exhibited mild cognitive impairment.

The psychologist may suggest ways of learning and retaining information that will help you on a day to day basis.

[addicted2harleys]

MissL-

Funny, you asking the difference between reg psych exam and neuro-psych exam.  I don't have a clue.  :)   I just know that everyone here says to get the neuro one, so that's what I did.  

So, I hope someone answers that question for both of us.  :)   And I will let you know how mine goes next week.

Hugs,
Addi

[MissLauraI]

cainer- thanks for that. Hormone problems at 30???really? I don't want go all crazy on men or anything, but I wonder how many women were told by male neuros it was hormones or in their head. How can you be borderline MS?

[cainer]

hi--  yeh  i was told hormones- when my eyes were acting up-i was in my early 30s -but that was a eye dr- and i didnt know!1
then neuro-acted like ??? and sent me home - i go back  he goes do you want to have ms?? urgg yeh a lot of us have been through crap!!
i forgot one--do you do drugs??  yeh  then finally one told me i was on borderline for ms- whatever that meant?
im very sorry you are taking this road- but find a good one you be alright!!!  hugs  cainer

[MissLauraI]

Ren- thanks for the link. Wow that is an eye opener. I have requested a psych examine to get this out of the way. It makes me mad that people get a label that is stuck on them witout truly investigating the accuracy.

Addi- I will be very interested to hear how your psych examine goes. I am going too. The only thing I am unsure of is the difference between a neuro psych and plain ole psych examine. Are they different?

[rendean]

MissLaurel,

I missed your post intially somehow  but I just answered a very similar question by rls. I directed her to our Health Pages in the upper right hand corner of the page next to the yellow icon.  There is a page on conversion disorder, actually 2 . Below is the link to the MS and conversion disorder:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36

There is also a Health Page on MS and depression.  Like I told rls, MY personal opinion and it's my opinion, not one written in stone, I would schedule a psych exam just to take the issue off the table. Please read my answer to rls in case I forgot to tell you something. It's been a long day.

Hang in there,
Ren

[addicted2harleys]

Being dismissed by the doctors that are suppose to be helping people obviously happens far, far to often as we all can see with the posts that always crop up here on the forum.  And the most gross part of it is that many of these same people go on to be dx'ed with something totally unrelated to mental health.  

It is so wrong on so many levels.  And it beats peole down by hearing it and experiencing it.  It is just plain wrong...and unfortunate.  :(

I, too, have experienced it myself as is one of two reasons I have a neuro-psych exam set to happen next week.  The other reason I am having it done is because I want to know how, whatever is happening with my body and mind, my cognitive function has been affected.  This neuro psych exam will cover both aspects.

I encourage you to set it up, too, like JJ says.  It is most empowering for yourself to know that this is "not in your head" and will give you proof to contradict any doctor that tries to hit you with the anxiety and/oe depression card.  And, it will give you a baseline to help you track your cog issues, which is just as important.  

Hugs,
Addi

[MissLauraI]

Suman- that is kind of how I feel. I mean I feel upset that my body is having these symptoms. Two years ago when my leg went weak, I just kept thinking it was a pinched nerve and they just couldn't find it. I thought it would work itself out. So when MS was mentioned...wow how the H are you supposed to respond? Throw a party?

JJ- I appreciate the long explanation. It just goes to show how arrogant and prideful some of these doctors are. That is incredibly painful to have a doctor dismiss you like that. I would be angry too. I hope that isn't the end of the story for you.

[supermum_ms]

Yes and i'm still really really pissed off about it, first neuro found clinical sx, found lesions in white matter and deep white matter but told me I didn't have any, then said the cognitive issues was probably senile dementia (45 is senile lol) and the physical issue was probably psychological. I did all the right things, I had no history of ever having a mental health issue but still I had the psych assessment and no mental health issue was found, so i'm sane and always was lol

I even had the neuro-psych mini battery of tests and that test found a loss of 30+ IQ points but but but but BUT because my IQ was originally in the highly gifted range that loss only put me into the normal range and normal isn't classed as abnormal! To make the point of how stupid this situation was/is, if a person with normal range IQ lost 2 or more standard deviations (15 points = 1 std deviation) or 30+ of their IQ, they would be close to or in the retarded range, which is <=70.

He made a point of telling me it was probably just stress, he even called my psychologist because he didn't believe i could of had that high an IQ before, they even argued about the mental health tests she did. My psychologist told me she had never been so angry, she did investigate with her mentor the dreaded conversion disorder option, and they could not find anything in my tests or history that would support that or any other mental health issue, their collective belief is that my problem is neurological and not psychological.

It took over a year for me to face going to see another neuro, GP is convinced its MS and sent me to see a local neuro because he could get an appointment for me within a week, it would of been better to wait a year to see an MS specialist. This neuro wow it still hurts thinking about what he put me through, clinical sx found prior are now worse and didn't alter no matter how many times he tested it ( it felt like i was being tazered), I fell twice landing really hard and this guy only asked questions that were all about mental health.

All my no answers didn't satisfy him, he still asked, all the no answers from my husband didn't satisfy him, even the testing that proved i didn't have a mental health issue didn't satisfy him. He didnt technically say mental health but its not hard to work out "sometimes psychologists dont recognise psychological problems" was his response to being told i'd been psychologically tested and cleared for all mental health issues. WTH! Lol he even told me my eyesight had nothing to do with MS (double vision & uni nystigmas) which are common for MS. lol

He said from the moment he first saw me, the way i walked reminded him of a patient he had over 20 years ago, now i have to wonder what that girl was dx with and if it had any baring to why he totally ignored the clinical sx and MRI lesions and my lack of mental health problem, notice I said ignored cause thats exactly what he did. My GP was not impressed at all, gave stricked instructions on what to do, where to go but darn it being treated like this sort of puts you off a bit, so the last episode i just didn't have the strength to go through it again.

Sorry i've gone on and on, just shows how much it still boths me, I probably should of just posted the word YES but regardless of my experience i still highly recommend getting your self assessed for mental health and if you can, to also get neuro-psych testings done. Its important for you to know if it is a mental health issue or not, i'm not thinking about setting the record straight, it should actually do that but i'm thinking of the empowerment it will give YOU!

Cheers...........JJ  

  

[Sumanadevii]

Here was my answer to my first neuro that dxed MS as a pinched nerve.

"Yes, oh yes, I am depressed.  My body is failing me more and more each day.  Wouldn't that cause you to be depressed?  You find out what is wrong with me and the depression will lift.  This is a "situational" depression and I am NOT going on medications to mask what you can't find."

End of conversation.

[MissLauraI]

Starryeyes- I think that being stressed when you know something is wrong and you are not getting any support is a normal reaction. I mean who wouldn't feel stress in that situation. I am happy to know you got the answer you needed. It is encouraging to me.

Risfms- Good for you! Even if a person is depressed, how does that change anything anyway? Isn't depression common in MS? I am going to get a second opinion too. I want to find an MS specialist to check things out. It is something that I have to wait for however. The Neuro I have right now has to finish his tests first before I can ask for it. That is looking like sometime this summer.

jensequitur- I sent an email making the request. One question. Is there a difference between a reg. psych and a neuro psych?

Thanks for the answers. I had my suspicions that this is a common complaint based on some of the other threads I read.

Hugs to all of you for your help!

[jensequitur]

I would definitely push for a neuro-psych if your neurologist wants to push this off on conversion disorder.  It's not his job to decide you're faking it - that's the job of the psychologist/psychiatrist.

[rlsFMS]

Hi!
I wasn't "initially" told this - but after two years with this neuro and many, many tests... Today he said I am "Depressed".

I will be seeking a second opinion... I hope you will too!

rls

[Starryeyes2]

I was told I am over stressed, hysterical and needed counseling. I was dx shortly afterward by an MS spec in another state who dx me within 10 min of examining me.

He read the MRI's and discovered 4 lesions when the other guy only saw 1. I still have anger over the way I was treated and the fact that I went without medication to slow this down..

Keep fighting.
Kristi