According to my MS Specialist

[LisaJF]

Today was the "big" day to see what he thought of what was going on with me with the lessening of symptoms.

He said he didn't know.  He had Movement Disorder specialist, a Neuro-opth and a urologist look at me and they can't come up with nothing.  

The only thing left he said is, "Conversion Disorder".  

I asked him after our first initial visit, does he remember when I called him about an hour later to ask some questions and one of them was, "Do you think this is psychogenic or a conversion disorder?"  He said, "No I don't remember".  I said, when I asked you, you said "No".  I also told him that if I truly felt that this is what I was going through, I would of seen a psychiatrist long before seeing him.  In fact, if I thought by now if I had a conversion disorder, I'd be seeing one today or making an appointment to see one soon.  I told him that I would rather have something that is "fixable" and go on medications and participate in therapy to get this all squared away.

I know in my heart and with my knowledge base in the medical field, that this is not the case.

I think he had given up on me himself.  

So now what.

Lisa

[17o_bandslater]

What a rat fink ferfidious f-wit excuse for a neurobot. I don't know why, but they've really latched on to conversion disorder; yet they refuse to follow the DSM's diagnostic criteria for it.

Here's some perspective: Psychiatrists are getting pissed at neurobots over this conversion disorder thing, because the criteria for conversion is that there can be no biological explanation for the symptom. Neurobots do a short psychiatry rotation and consider themselves qualified to assess mental health, without using any of the standard tools, in a 15 minute appointment.

Well here's the kicker: Psychiatrists get essentially the same training as neurologists. I've spoken with multiple psychiatrists who all say the same three things: 1) They're finding conversion disorder to be increasingly rare; 2) They're constantly getting referrals for people who do not  meet the criteria for converson; and lastly, 3) "I don't practice neurology, so what makes this neurologist think he can practice psychiatry?"

I've decided to be blunt with all future docs, before I even let them see my file: "Dr. X, I am looking to hire a neurologist. I have a mental health team in place and they are watching out for symptoms of conversion, depression, etc. Therefore, I will not need your opinion on this, nor will I accept its entrance onto my chart or DDx. I will view any mention of conversion (or any other psychiatric disorder) as a failure to Dx and treat. If we work together, I will expect you to practice neurology. Period. Will you be able to accept and work within these parameters?"

I figure this will scare the bad ones away, or at least ID them PDQ so I don't have to waste my time.

You should send this f-wit Neurobot my definition of conversion disorder. I'm so sorry you had this experience. It is just exhausting, isn't it? Trust yourself. You are the expert on you.

[LisaJF]

I can't thank you enough for you time to respond and the unfailing support in this matter that feels so devastatingly unreal to me.

However, I can not rule out my MS Specialist's diagnosis.  There ARE people who can have conversion disorder, malingering, dissociative symptoms, etc.  I could be "one" of those people?

Yes, I have doubts of what I have been experiencing is actually "there" and wonder during my neurological exam, if I have "helped" along the hyperactive DTR's or exaggerate my gait to display the seriousness of what I'm going through.  It makes me second guess. I can't help it.  

You don't take an educated man who's experience is above reproach, diagnosis lightly.  Even if he is an @$$hole.  There's a reason why he came to that conclusion.  I must find out if it is viable.

I feel, that if what I have is of the "mind" it would be like any other disease out there ie: Diabetes, Hypertension, etc.  It's a health problem and there are therapeutic modalities (pharmacological, psychological, etc) that can help and treat me to get better.  I would not be ashamed if it were so and I'd do anything to make myself "functional" again.

Again, my MS Specialist reminds me at every visit my symptoms do not match up with my lesions.  That he "doesn't" understand why I am having what I am having.  Long ago back in 2006, I had just a positive Rhomberg sign discovered by a PA during a physical examination I needed to go to my new job.  I had no other neurological issues at the time.  I did not believe that this finding was of a conversion or dissociative disorder.  It was real then as it is real now.  Does it affect the way I operate? No.  Who walks around with their feet together, eyes closed and arms outstretched? No one.  

I am also very stressed now since my office visit yesterday.  Emotionally stressed.  My symptoms are not "worse" nor did any new "symptoms" arose either during this 24 hour period.  

Yes, this makes me wonder if what he concludes has some validity to it.  I think anyone in my shoes would feel the same way.  I would have to go and get evaluated.  Was my fatigue at the time of onset in June of 2010 real? Yes, I had "mono".  My EBV titers were very high.  I can't make those numbers jump from normal range to high range.  But, those titers went down when she retested me and that is when my left leg had paresthesias.  That is when I had nausea 24/7 (for 10 months) and went to a Gastroenterologist for EGD and colonoscopy to find out that I had moderate gastritis.  

Do I think in my heart of hearts he is right? No...not really.  But do I think there's a possibility? Sure.  I can not dismiss this. Would you?

I dont think there is a reason to follow up with this "MS Specialist" due to the fact that I was asking for blood tests that were sound suggestions of causes of my symptoms.  He dismissed them.  Not once since I started seeing this MS Specialist order any blood work or diagnostic testing.  Not once.

As to where I begin from here on in? I do not know.

I placed a call to my Primary doctor who promised me from the very beginning that she will diligently find out what is wrong with me.  A tireless attempt to figure out what is going on.  She has always returned my phone calls when I left messages.  Yesterday was the first day she did not. I now feel that I am up against a wall.

I may sound like I know what I'm doing and perhaps since I was a practicing medical professional that I should know the path to take.  But I am at a loss.

Thank you again for your kind words, support and time to respond to me.

Lisa

[anon07072023]

You definitely need a new neurologist...one that's not a dumb a$$.  How can he say possible or probably MS, then go to this????  If he doesn't know what it is...why does he automatically jump to conversion disorder?  I would be so upset if I were you.  He seems like he doesn't even want to help now.  You're asking him about taking these other tests and it seems like he just wants to wash his hands of you.  

He's downgrading everything that you have going on.  And what about those lesions in your brain that we can all plainly see in your MRI scan?  Hello?  Those are NOT normal.  Those are not due to age or anything like that. What has caused those lesions?

I'd say, never go see that neuro again.

I wish you all the best,
Hugs,
Kelly

[tingletingle]

Sounds like a very difficult day at the office would be an understatement - and you had to pay for the pleasure. I am sorry for all you are going through.

Blessings
Alex

[Karen99]

I should have proofed what I had written before I posted it.  I meant that he doesn't need to be specialized in referrals to send you to a specialist.  Though it does seem he likes to send you to others to make a diagnosis for him.

[Karen99]

Hi Lisa.  I've been following your posts since you joined the forum.  I'm no expert by any means, but I believe what you are saying and don't for a second think you have conversion disorder.

Ditto to what Alex said "Conversion Disorder means I do not know and I am embarassed to say so."  That and they are either too busy, not motivated, not interested, or don't have enough brain power to want to figure out what is going on.  No one and I mean NO ONE should slap that label on a patient except for a practicing psychiatrist.  All that neuro gave you was a lousy opinion.  Take it for what is it - an opinion.

The neuro told you to clear your name "No I don't know of anyone and frankly that's not our office's specialty".    Fine, he doesn't know any psychiatrist to refer you to.  If he believes you to have conversion order he should be suggesting you go to one even if he can't refer you out.  It's not a specialty for goodness sake.  If he had some ba!!s and brains he wouldn't need to send you to these other specialists.  You need a neurologist to fit the pieces together!  Duh!

You may not have MS.  The problem with your medical evaluation from the onset is that you have been told stuff that do not ring true or make any sense.  Your BS detector is highly developed.  It becomes very difficult to trust or believe a physician when so much nonsense is thrown your way.

Don't feel all alone in this.  Even Quix was suspected of malingering.  When I began my journey I had fabulous medical insurance.  All the doctors were more than happy to listen to my sad tale.  They didn't have much to offer and often I was making requests for this test and that test.  I was obliged because I was a cash cow.   I'm sure many thought I was imagining things.  A few along the way pointed me in the right direction because they LISTENED to me.  

I got myself very stressed out and had to take a break.  It was all so frustrating. For now, go get your forehead stamped "Not Conversion Disorder."  

When I developed double vision, left sided numbness/tingling and the feeling of my hands and feet in gloves the doctor I had been seeing for 1 1/2 years told me it was due to anxiety.  Hell yes I was anxious.  So what?  She prescribed me Flonase.  Thanks doc.

A diagnosis of conversion order should be struck down.  Check to see if there is an MS group in your area - they can tell you all about the neurologists and other doctors. A fibro group or autoimmune groups often deal with neurologists too.  Keep your appointment with your current neuro but replace him if you can.

There are brilliant neurologists out there and then there are some really weird freaks.  I once worked for one of the freaks.  He was neurotic, egotistical, mean, crude and off his rocker, frankly.

Your particular problems interest me.  You need to find a neurologist that finds you of interest.  I am praying that he or she is around the corner for you.