What do I do now??

[Tammy826]

After the awful ordeal at the E/r & fabricated report from the 2nd neuro (I have a new one now) I don't know how to proceed. Now that the crazy label has been stuck on my forehead how do I combat that? Its in my report & will follow me everywhere. I'm more than willing to talk to a counselor or pshcologist if I can find a free or low cost one but will it help? I have the whole community & my church ticked off at the hospital after seeing the bruises on my arms that the E/R doctor put there plus they've known me me whole life & know that somethings wrong & its not any sort of mental issue although if this keeps up it will be. I feel like going bonkers & blowing up the hospital but I know that won't solve anything. Now I'm scared to death to go back to the Dr. but also scared not to. Any advice??? Thanks & God bless!

[thyroidian]

dear tammy just reading your post,and being new to this forum, i am just wondering on what is going on. im writing this as i feel you may be in the same boat as me, but i just dont understand your full story, maybe you could shed some light on what as been going on and maybe i could help you?  as for phycologists they are for mental issues and not health issues if you are having health issues you need them addressing before considering the mind games they play with you? trust me i know...... i hope you give me some light on your symptoms and i might be able to help.... ps. once you get a mental issue it never leaves you and doctors dont take you serious......good luck hope to  hear off you soon.

[saveone]

Tammy I have to respectfully disagree in regards to the counselor.  Having a counselor has helped me with my health issues in immediately cutting off the last ms specialist who mentioned psychiatric issues.  You may read my journal entry     http://www.medhelp.org/user_journals/show/84693?personal_page_id=261903 for a more detailed description of how it helped.

Also counselors are not there to "stick a label on you".  I have read several posts on this site where members have posted that their counselor did not believe their health issues where "in their head".  Just having someone tell you that it isn't can boost your confidence.  It seems to me it is the neuros who like that excuse not the psychologist, counselor etc.

Besides it is good to have someone who is impartial to help with processing all the emotions that go with the stress of finding/fighting for a dx  and girlfriend if anyone is under stress it has to be you.  You have been through so much on this journey, sacrificed so much and we all know that no one in their right mind would want to go through the losses and such that you have.  Thank God you have that wonderful husband to support you.

Hang in there and remember it is not all in your head and being able to tell a neuro sorry you already have a counselor and he/she doesn't agree is empowering...at least in my opinion.  terry

[Sarahsmom46]

I had a conversion disorder suggested in my case too by a neonate know-nothing just 2 years board certified general neurologist who probably had me labeled before he even walked into my hospital room when he was called in for a consult.  Worst part was that he had no qualms in writing this up and sending his "diagnosis" to my PCP.  When I went to my PCP after my hospitalization, she walked in and asked if I had seen the psychiatrist yet.  How atbout that for wanting to cram my fist down that guys throat.  

But, there is hope.  And, what I suggest you to do is get that label off the table.  Oooh I like it when things rhyme.  :)  If you can find a low cost or even free counseling service in your area - hey you might even call that neuro and ask him to help you find someone, then I think it is very worthwhile to go see someone.  Several others here have gone this route and have all come out with a clean mental health report.  

Please don't let this silly suggested diagnosis keep you from doing what you need to do to take care of yoru health.   See it for what it is, a snap judgement by a doctor who doesn't even know you well enough to put such a diagnosis in writing in the first place.  You might even want to talk to him about how he came to that conculsion.  I did.  I asked my neuro what he was basing that on as I was genuinely concerned if this could be the case for me.  He said it was because my husband was about to deploy to a war zone.  I aslmost started laughing in his face as my husband had been in much worse places in the past than where he was headed so ha!  I knew he was full of it at that moment.

Again, please don't be deterred by this ridiculous notion of his and waste your valuable energy on it.  There are better doctors out there for you to go to and you will find one as we have all found one eventually.  

Hang in there and keep moving forward in this journey.

Julie

[Quixotic1]

I agree that getting a counselor or a psychologist to evaluate you may be your greatest help in all of this.  Several of our members, including Momzilla, were able to remove the stigma of "It's all in her head," by getting a strong opinion from a mental health professional.  And it will make you feel better, too.

You can overcome this kind of nonsense.  Julie and Terry have given you great advice.  It's too bad that such a thing has become necessary, but you need to take steps to counteract the damage done by these doctors.

I have lost track of how you are feeling now.  What is happening with the symptoms that you went to the ER with?

Quix

[Tammy826]

Hello & thanks for your advice! You all are my shelter in the storm right now. Quix, to answer your question about my sx now, I'm still dragging my leg(L) , can't grip at all with my L hand & barely with my right, still have a headache, my whole spine feels like its a combination of tingling & burning, twitching is a whole lot worse, now I have a weird tremor in my R hand, I'm noticing alot of brain fog, my whole body feels like I have concrete all over & this may sound strange but my muscles are moving in my L leg & you can see & feel them like waves under my skin & its very un-nerving, I also have like electric shoks going everywhere & feels like chills sometimes in my legs but I'm not cold. I plan to call my GP tomorrow morning & try to talk to the nurse & I'm gonna tell them I can't afford to come in for Tuesdays appt, what happened wednesday, & what should I do. I talked with my hubby & I think we're both gonna seek counseling (he was traumatised by this too) but what would be my best option, a counselor or psychologist, or a shrink? Thank you again & God bless you! I'll go rest some more (seems like this episode has made me more fatigued).

[saveone]

I would go with a clinical psychologist or an LCSW as my second choice.  I have worked with many psychiatrist and I find they are more DSM and medication oriented.

AS you are here in KY, I don't know much about other states, we have a Comprehensive Care System that provides mental health services.  I can't remember what area you would fall in but if you would like I can find it and the number for you.  PM me if you need to look it up for you.  The comp cares work on a sliding fee scale, meaning you pay based upon your income.

We also have the Community Action Program and the Christian Appalachian Project in this area that does the same.   The Christian Appalachian Project  (CAP) I believe is state wide.

I hope you get to feeling better soon.  terry

[Wobbly]

Hi there, I have been going through tests for a few years now and one of the first things they told me was see a psyciatrist...which I did and we talked for quite awhile, she said this is not in my head and I have it to show or let the specialist know... seems like once I got this done...that subject hasn't come up since....

I hope you can find someone that can help and if I was you...I would still contact the head person at that hospital...and put in a complaint or at least...ask them if this is the practise they use...and then let the media know if it is...

I know when your not feeling well, it's difficult to start something up.. you have friends and family that know you and it's not right the way the medical staff treat you.

take care and don't stop searching... I'm still trying to find more answers
Wobbly
undx...

[Quixotic1]

If it is at all possible try to get a video of the muscles writhing under the skin.  This is probably a condition known as "myokymia."  Anything that can be video'd will be added evidence that can't be easily dismissed by a lazy mind.

Q

[Charley123]

Several years ago I was told I had conversion disorder by my 1st neuro. I was really angry about that.  I did go to see a nurse who had worked with conversion disorder for over 20 years and she told me I definitely did not have it.  However, I didn't get anything in writing from her.  I fired that neuro.  I wondered if my new neuro, who I saw a few months ago would pick up on it when he read my history.  I didn't bring it up, but he did.  He said, "When a doctor does not know what is going on with his/her patients, the patient will be told that they either have a virus or that they have mental problems. I apologize on behalf of my profession for what that has done to you". Please find someone who 'can' help you.  

[ShadowsSister]

Hi, I just wanted to share with you that I went into counseling for 8 years to help me learn how to face and deal with MS and how it was effecting my life in so many different areas. I had many Dr. who disagreed with the DX of MS, because I wasn't so called "Text Book" , Even a short time( 23 years,) ago that so called "Text Book" was rather a short read. I have YET TO MEET anyone who is "a TEXT BOOK" Pefect case of MS.  
Tammy, Quix and the others have all made some very good suggestions to you, Please don't give up on yourself, don't let my 8 years of counseling put you off, but I do believe it takes as long as it takes and everyone is different, even though we share a  lot of the same symptoms.Don't let any Dr. lable you with out a fight if you know they are Wrong. and Don't you ever GIVE UP ON YOU !! This just makes me so angry, we have enough to contend with with out some Doctors who think they are "Gods"  That being said, I STILL Believe there are far more Good Doctors, than there are bad ones.
I do hope you'll stay in touch and allow our Group to be a part of your support system, speaking for myself, I would be lost if it weren't for this Group supporting me... I'll keep you in my Prayers... {{{~!~}}}