"Conversion Disorder," not MS???

[DebDJ]

Hi to everyone! I am so happy to have found this forum-just maybe I'm not crazy afterall! I have been experiencing many sign/symptoms of MS since my early 20's (I'm now in my 50's.) My symptoms would come and go, and although they puzzled me, I did not worry about them: migraines; slurred speech; severe fatigue; pain in my legs (muscle cramps); pain in my right arm that feels like I am being stabbed w/a hot poker, which would sometimes put me on the ground, along w/weakness in the same arm and more I will not bore you all w/now. Although I would mention these various symptoms to my doc at he time, there was always a logical answer: leg cramps-I was a jogger; migraines-I was a young teacher w/stress, etc.  I did not mention the slurred speech to the doc.
In the past 5-7 years, all the above symptoms and more have become so severe, I can no longer teach-my life's passion! I have been to every genre of doc in the world and I hear comments such as: I think it could be MS; I don't believe you've had a stroke; you have a lot of stress, but I don't believe you have any psychological problems; etc....However, the neuros I've seen say I don't meet all the "criteria" bc the "spots" on my brain may not be MS and w/out "lesions" I cannot be dx w/MS. I have inflammation on my spinal cord (thoracic) and had a LP a few weeks ago-still waiting for the results. The doc who did my neuropsychology test said I may have "Conversion Disorder" but was NOT SURE! When I was tested, I spent the day at the clinic and then was handed the Min.Personality test (to complete at 5:00 that same day), which was sooooo long, I nodded off three times while trying to concentrate-impossible! Told the doc I just filled in the last 50 or so questions. AM I CRAZY?!? I read about the CD and think it is the most ridiculous thing I've heard-serioulsy??? Freud??? A cocaine addicted sex maniac??? Is my uterus "floating into my brain!!!???"
I am really an upbeat, positive person and believe myself to be a VERY strong woman, but I am at my wits end!!! I do NOT believe I'm crazy, but this CD crap IS!!! (sorry for my "French") Please, would someone tell me they have experience something similar while trying to discover what in the world is going on w/ our bodies?
Hope you all are well
Dee

[sarahw244]

Welcome to the forum!  I am really sorry you are going through this right now!  How horrible!

Conversion disorder seems to be a "diagnosis" that the doctors slap on you when they can't figure out what IS wrong.  I have taken a few mental health classes in college and we have talked about conversion disorder extensively.  From what I learned, it is very rare.  I remember saying to my teacher, "well that's funny; I know a few people that have been told they have it".  She said that she has been a mental health nurse for 20+years and has never once encountered anyone with conversion disorder.

It is good that you did go through with the neuro-psych testing, but it sounds like a crock that they couldn't tell you yes you have it or no you don't!  Either you do or you don't.  Probably wasn't a very good doctor, IMO.

Have you been to a MS specialist at all?  They do make a difference!  I first started seeing one about a month ago and have gotten further with them in one visit than I have in the last year.  They know a lot more about MS and the diagnosing of it than a regular neuro, and they seem to be more "willing" to give you the diagnosis when perhaps the evidence isn't 100% conclusive.

The LP results do take awhile to get back, I think mine was like 3 weeks or so.  Do you have a follow-up appt scheduled with the doctor who did the test?  Have you had any other tests done other than the LP and MRI?  Like a EEG or evoked potentials or nerve conduction study?  Those 3 things would also be in order, I would think.

You are NOT crazy!!!  I think we all feel that way sometimes!  It's hard not to.  All of us here are in this together and we all try to help each other through the rough spots.  You will get through this!
Take care,
Sarah

[ErnBird]

The other thing that doctors (not psychiatrists or psychologists) say when they have no idea is "psychosomatic". Psych doctors know about this.

There's an article about this:http://www.psychologytoday.com/blog/emerging-diseases/200910/chronic-fatigue-lyme-medically-unexplained-no-more

[illinwithoutacause]

dear deb,

one of our former members drafted a beautifully researched health page for the MS forum on conversion disorder.  you can view it at:

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

it's a 2-part piece.

blessings to you.  you are not alone.

IWC

[DebDJ]

Thank you, IWC-I read the article and it was very helpful.  I hope you are doing well today.
Keep looking UP!
Dee

[chefaid90]

another thing they like to throw out at ppl is fibromayalgia when they dont know what is wrong with you.

[MrsAristotle]

Hi, well they either give you the label of CD or Fibromyalgia, or ME LOL. Dont you just love these neuros..........tee hee. (you say the same lol)

Conversion Disorder is the need to be ill and often triggered after a lot of surgery...the thinking is I suppose that whilst one is sick or having bits removed that they get lots of attention, and over the years it manifests itself as a long illness with no apparent cause...or it is triggered with things going wrong in the persons life and stress etc. It goes alongside hypochondria and  Munchausen syndrome.

I just sigh and say OH THAT OLD CHESTNUT "YAWN".

Sometimes I think the neuros think we are all stupid and thick and dont have brains or something...they deal with us patronizingly as though they are the superior beings lol...but not so superior really because if they were superior to us minions, there would not be thousands of us in limbo land trying to find out what is wrong with us.

I am soooooooo cynical now. Bad me lol.

Even with positive VEP test proving i had optical neuritis in BOTH EYES (I knew exactly when this started but it was ignored), lesions on my MRI both in the brain and the spinal cord, and a lumbur puncture which showed lots of O BANDS, but sadly for me the blood test that i had at the same time had inflammation in it so my LP was deemed negative for MS.

Just because of inflammation in my blood which could have been there as a pure coincidence. If no inflammation then i would have been diagnosed with MS. I was offered at the time intravenous steroids which is what someone with MS would have been given...go figure i refused as I dont want my bones brittle as well....because of my age and I do have first stage osteo...

So I just muddle through now, i find the doctors far too stressful, trying to get a diagnosis wearing me out, so now i care not.

I think my doctor did sit up on my last visit about 4 months ago when i fell over in front of her and landed on the floor....well at least she saw it happen for herself and that when i have told her I stumble and loose balance i sometimes think she thinks i am just saying it lol.  But landing near her feet in an ungainly fashion was the best thing that could have happened to me, as from that she has been treating me with more respect. She actually more or less said to me at the time that she does think i have MS, but it is so frustrating when the tests although having some positives are not 100per cent there.

By the time they are I expect i will be gone with the daisys lol....

Anyway take no heed about CD its pants and they know it.

Go out and enjoy your life and live it to the full. MS can wait if that is what it is, and one day it will reveal itself and then you can blow raspberries at the neuro and say NAH NAH lol.

Hugs. The mad women.

[DebDJ]

Dearest "Madwoman,"

I so enjoyed reading your post.  It's humorous contents brought many smiles to my worry furrowed face!

I do feel badly that you have gone (are going) through such a difficult journey.  I do hope you will not give up, though-you are worth whatever it takes to discover the truth.  Tell you what, if you don't give up, then neither will I-DEAL???

KEEP LOOKING UP!

Dee

[MrsAristotle]

hi dee glad i made someone smile for a change lol.

I will endeavor not to give up because I cant now as we have a deal lol.

Laughter is the best medicine for all of us...and I just go onto google and look for neuro jokes lol...there is so much out there...so many of us in limbo land.....

 
Neurology

Your brain is a masterpiece,divided into two parts, left and right. In the left nothing is right and in the right nothing is left.

[DebDJ]

Dear Ari-

LOL-YES, LAUGHTER IS THE BEST MEDICINE!!

Have a great week!

Dee

[Londres70]

Yes, I would agree with all the above posters.  I find Neurologists and Neurosurgeons a breed of (you fill in the blank).  They do tend to have this "superhuman/godlike" attitude towards their patients which I find appalling.  Perhaps they NEED to become very ill and someone give them the same attitude they have given out to their patients just to see how it feels.  

The wonderful bag of labels:  "Psychosomatic"  "Conversion Disorder"  "Stress" and lets not forget "Fibromyagia."   I am not saying these diagnoses doesn't fit a "handful" of patients, however, just seems way TOO many people are being diagnosed with the above and dismissed.  What is worse, some patients are NOT getting properly tested/assessed.

As a nurse and a patient I can say this.  In 2009 I started having some serious health issues that NO ONE could tell me EXACTLY what the hell they were.  The treatment I received as a patients went from mediocre-horrifying.  I just couldn't believe these people who took an oath to help people WEREN'T helping me, in fact, could care LESS.  Then, they reach into their label bag and choose one and place it on and scribbled this nonsense into your chart.  Just love it when they say if you have anymore problems come back; well some of them did.  Some of them just basically throw you out their office as if they would like to tell you "Don't ever return; you wasted my time."  Pffff!!!!

I can understand your situation not being in the realm of a Neurologist of a Neurosurgeon, however, I don't understand the labeling nonsense and/or no testing/treatment.  

What idiot would say....."Hmmmm, I THINK you might have Conversion Disorder."  You should have said "Hmmmmmm, I THINK you don't know what you are talking about."  

Medicine is going to "hell" in a handbasket.  Finding a decent physician is becoming more and more difficult.  Maybe if they took the money equation out of it a bit we would get people who REALLY want to be physicians AND helpful to people and NOT these people sitting in their highback leather chairs playing "GOD"  and snubbing patients.  

[DebDJ]

Dear Londres,

I am so sorry you have had to suffer through the same demeaning treatment so many others of us have had to endure, seemingly, just because we seriously seek to find out what is going on w/our bodies.  

I am most puzzled by the fact that the docs are so bent on separating our brains from our bodies and our "minds" from our brains.  "Where" in my brain in my "mind"? is what I would like the docs to answer.  AND...IF my mind is a part of my brain, then if something is going awry in my mind, is that not an "organic" cause of my symptoms?!? I just do not understand why the docs want to make something that seems so simple to me, so complicated.

Oh, I could go on and on...! Can anyone possibly believe that the symptoms/signs I've been experiencing since my early twenties, somehow "appeared to mimic an organic brain disease" when I (we) do/did not even know the issues we experience were "mimicking" this or that disease until we began to have these symptoms affect our lives to the point we had to seek medical help on our own quest or at the suggestion of our doctor(s)?

About 5-6 years ago, when I showed up in my PCP's office lobby to pick up some papers,(my doc was teaching at the hospital that day, so wasn't in),  I was in the middle of experiencing acute symptoms I had been experiencing for several years, his nurse asked me what was wrong. I replied that "this" has been happening to me for years, but the neuro told me it was from my migraines.

After I left the office (yes, I was driving), the nurse called me and left several messages for me to call her, stating that the doc was very worried about me. (BTW,I love and trust this doc!) When I got home and listened to her messages, I called back.  She was so sweet to me, as always (I am treated so compassionately & respectfully by everyone in the office, especially my doc, thank God!)

She explained that the doc wanted me to go to the hospital for an MRI right away bc he was concerned I was having/had a stroke.  Of course I went right away. A report was sent to my PCP & my neuro. The neuro said the five "lesions" on my brain were something "everybody" has and said I had experienced a TIA.

I had no reason to not believe him, but whey I went to my PCP for a follow up, he appeared to be frustrated at my diagnosis and told me I was too young to have had so many "stokes" and also, he/we would have been "extremely aware" of it.  By then, I was used to have odd attacks that would come and go, bc this had been going on w/me for decades. I told him that the ophthalmologist has asked me twice, if i had been tested for MS.

At that time, I had never considered the possibility and really knew little about it, other than knowing a few people who had it w/whom I had been friends since my twenties.  I never once thought I had or could have MS.  I really thought I must be having TIAs. My PCP was persistent & said we really needed to "investigate" to get to the bottom of what was going on w/me & see if we could "rule out" MS.

And soooo....that is when this NIGHTMARE really began! Everything has been ruled out and I have had 4 docs tell me they believe I have MS. But, because my LP came back "negative" the specialist says she is not sure it is MS, although I have the lesions on my brain and inflammation in my thoracic spinal cord. Sooo...now the CD is next to be investigated. WTHECK?!?

I really do not know what to do next!!!

Thanks for "listening."  I hope we will all have the RIGHT answers soon.

God bless and keep looking UP!

Dee

[Londres70]

Are you waiting for this specialist to concur this is MS as well?  Does this specialist deal with and treat MS on a daily basis?  

Have Vascular and Infectious diagnoses been ruled out completely as well?  

It is possible to have MS with a negative LP.  

There is a possibility this could be OBS, but secondary to what is the question?  

[DebDJ]

Londres-

Yes, this neuro is an MS specialist. I was sent to her after my diagnosis bc she is a "specialist." Now, I have to start all over, I guess, if she is not sure it is MS anymore.  This is crazy!

I'm sorry, but I cannot seem to figure out what "OBS" is. Please fill me in. I see the neuro tomorrow, so I will fill you in then as well.

TY and keep looking UP!

Dee

[Londres70]

OBS=Organic Brain Syndrome or Organic Brain Disease.