Conversion Disorder Skeptic

[Lizzybrown]

Let me start with my backstory of symptoms. Since about age 20 any time I walk more than 3/4 of a mile I start to feel tingling, itching and burning in my lower extremities. It's so intense I've stopped walking to scratch the flesh nearly
Off. I've also frequently gotten pins and needles feelings in both legs and more so my right arm than left. As I'm typing my right arm wants to go numb or "fall asleep" I've often been poorly balanced/coordinated and lost control of my step. So I don't dance or do anything that would allow others to see my poor coordination. All of this including torso tingling and itching I've had on and off since 20-21 but the symptoms hide when I'm pregnant.

Within the last month I haven't been pregnant or breastfeeding. I had full torso itching and burning, loss of coordination and finally left side weakness, tingling, numbness etc.

I was falling straight to the pavement and even bruised my knee up really bad. I continued to forego the er because I would rather deal with my primary figuring even though it was awful that the ER would do the same work ups my primary could do and send me home. Well then the speech was gone. I couldn't find words. I slurred like a drunk. I don't drink. That progressed into full on stuttering. So my husband said enough. He brought me to the ER where they assumed stroke or tumor. I couldn't feel the whole left side of my face. Anyway they did a cat scan, clean. Before doing an MRI I was admitted. The attending said "no disorder or disease looks at all like stuttering and gait issues so this probably isn't anything I hate to tell ya" so they did the  brain MRI with and without contrast and said it was clean. The next day the doctor says "This is probably conversion disorder"  the neuro comes up and says its conversion disorder and possibly my right leg twitching uncontrollably was related to a sleep condition they think I have. The neuro made me cry so of course it was concluded I have conversion because I was crying.

I had a full psych work up the next day and the psychiatrist said I do not have conversion. He said based on my mental health history (I've never been diagnosed with mental illness, neuroses, anxiety or depression) and based on the fact that I've never been admitted for psychological disorders and because after a long eval he could find no reason to call this conversion...he' says its not conversion.

I don't want ms. In fact I don't have loss of bladder, bowel or complete loss of my reflexes so it's probably not MS. I just want an answer besides "ah you're mental!" Because I have no major stressors, I'm not depressed etc.

Since leaving the hospital most of my symptoms seem to have cleared up. I still have buckling occasionally and I walk like I'm on a roughed up boat because I sway back and forth to keep my balance sometimes.

I also have fatigue like nobody's business.

So anyway even though I'm thinking NOT ms the ms forum seems to be where all us CD folks end up. Mind, my "cd" symptoms cleared up without antidepressants or psychology. I just got up and got discharged.  I was fine. I have read a lot about cd and I don't see how anyone can have CD just because. I have 4 kids. I'm married (happily) and haven't had or witnessed any trauma.

Some other insight:
I have sleep paralysis (not confirmed by sleep analysis yet but doctor thinks so based on my description)
I had epilepsy as a child from age 3-7 I had seizures. The seizures stopped and by 9 I was weaned off of Tegratol. By 13 I was dealing with Alice In wonderland syndrome which my parents somewhat ignored thinking it was a hallucination from having a weird nightmare. It wasn't until 15 my mom talked to my primary who was going to do a sleep study but never did. I was 16 when it stopped. When Alice in wonderland stopped it was replaced with sleep paralysis which I now have with the come and go symptoms previously mentioned.
As far as my reflexes go my legs *sonetimes* reacted to being hit. Many doctors checked my reflex of my legs and one had to do a lot of moving to make it finally "Bounce" and I mean a lot. But when he tickled my foot by scraping the instrument up the foot it was fine. I was giggling like a child.
Anyway I don't have optic neuritis and I have mostly good reflexes and full control of my bowels. That was another reason the neuro said cd.
But I don't know. I'm skeptical. Can you have CD just because? For no apparent reason? And it go dormant or away on its own? No meds, just "bye" or at least they seem to have slowed down...

Sorry this is so long
My name Lizzy
My age 29
Marital status happily married to my guy for 9 years on May 15!
Mother of 4. Two have epilepsy and special needs but are champs about it!
Recently Dx "possibly conversion" the psych disagrees though and didn't rx any drugs so that's good.
Part time student studying resp. Therapy

And that's all. Feel free to ask for more details.

[Lizzybrown]

So I'm frustrated now. My gait improved after a few nights in the hospital and then I came home and did fine for a bit over a week. Just a little issue with my gait here and there but nothing noticeable.
Today I was having a good time with my husband and kids at a local festival and started having spinal pain near my tail bone that radiated to my hips. Ignored it because either way I have no diagnosis that's concrete yet so I figured IF its CD like they said then I can "ignore it" away. Then as I'm walking my legs give out and buckle now its BOTH legs taking turns buckling under me.
Continued to ignore it and have fun but I walk like a drunk and its annoying. The pain in my hips got more severe so I took a break. After we came home from the festival we were at I went to lie down. The pain was still there and was sharp but I used distraction technique to think it away. I got up after a half hour because I had to do something. Even with all my positive thoughts, ignoring the symptoms etc they hadn't gone away and I can't be one to just chill in bed and not do life....the pain was still there. I take extra strength tylenol but it doesn't work anymore. But I don't have anything else besides motrin and I was told to stop taking naproxen because I have an issue with a renal mass the size of a baseball. But they said its benign and not affecting my health at all.


I am still highly skeptical its CD because I have a pretty good life. Do I have it easy or is it perfect? Heck no but its not that bad. I have great kids, I get along with them well, I have a wonderful husband. Its not like  I suspect he wants to leave me or anything like that. He's a fantastic guy. Next weekend we take a break from the day to day to celebrate our 9th anniversary. We have a fun filled day planned with lots of romance sprinkled in.

I haven't even been really focused on this illness, whatever it is.

I know I said its not MS. I can hold my bowels, I can hold my urine. I don't get constipated. I'm regular.

But I'm just venting. I have severe chronic itching in my thighs. ITs not everyday its a symptom, like my others, that come and go at will. When its here its painfully itchy if that makes sense. I feel like I could claw through my skin. If its not my thighs and legs (usually it is) its my trunk and torso.

I hope they figure it out but the neuro won't see me until September 26th and I KNOW once they think you have CD even if YOU have zero reason to have it...you're just a nobody. A blip on the radar. Even though, like I said, they didn't run all the other tests to rule out organic causes they just made that assumption based on a brain mri and cat scan. No spinal mri, no lp, no eeg. Two tests and I'm labeled as crazy, seems legit.

They also mentioned migraines. Which can make sense. Not only do I get spinal pain in my lower back but also in the neck area that radiates down the the middle of my back but mostly located where the spine is at it doesn't travel to my muscles in my back. If that makes sense? It feels like my spine is going to crack especially at my neck.

When the pain is in my neck I can hear a grinding and then my ears ring all day!

I WISH I knew what this was because for it to even be considered psychosomatic like CD doesn't ring true to me.

/Vent over.

So that's a pretty comprehensive break down of symptoms. Leg itchiness/leg burning and numbness has been going on since 21 ish so I never considered it anything until now. And maybe it is nothing. Its just a pain in the *** amount of nothing.

[Lizzybrown]

Thank you. Yes that's what I meant lol. Sleep study.  I haven't had one yet. I keep getting pushed back on that. I see my primary next week. I definitely think I have an undiagnosed sleep disorder. Certainly would make more sense than a mental illness that I have no reason to have.
My legs keep falling asleep and my arms so hopefully it's just a sleep issue.

Thanks for the conversation and chit chat! I know misdiagnosis of cd is getting slimmer and slimmer but there seems to be too many docs saying "cd" when they get done with a few tests.

[aspen2]

Hi Lizzy!  In the early part of my diagnostic process, I finally saw a psychiatrist.  At the end of our appointment, he clearly told me to remember the date of our consult, and if any future physicians (ER, referrals, etc.) tried to blame my symptoms on anxiety/CD/MH to kindly direct them to his note on my EMR.  He was very frustrated hearing about all the armchair psychiatrists I'd met along the way lol.  Apparently you've met one as well.

I'm glad you saw the psych -- I encourage you to carry his notes with you to future visits in lieu of an EMR.

Have you had a sleep study?  I'm guessing no, and that's what you mean by a sleep analysis.  It will likely be very helpful to you.  I've had sleep paralysis once -- (medication reaction) -- wow that is really scary.  I can't imagine doing it regularly.  I had severe sleep apnea during REM sleep, and waking during REM is, I understand, the cause of sleep paralysis.

Much of your current sx could be due to sleep deprivation so hopefully you are getting closer to answers!!

Best wishes.

[supermum_ms]

Hmmm well i really like a psych who is prepared to call a spade a spade, and duffus neuro a duffus neuro :D, i think you're probably on the right track or at least have somewhere to start, let us know how you get on please but feel free to stick around, we may or may not be able to help much more than to listen and give you support, lol but we're good at that....

Cheers........JJ  

[Lizzybrown]

Thanks for replying! Like i said I doubt it's ms but there is no cd forum here at medhelp and it seems like all of the cd folks come here. Probably because CD is famous for copying MS.
But I don't even think it's MS. Ms doesn't present with sleep paralysis and waking nightmares and hallucinations.
The other night when I had a bout with sleep paralysis I woke up for real and the left side (which is my weakest side) was  experiencing sharp pain all the way from my left cheek down to my calves. Intense sharp pins pain.
So I'm investigating and sleep paralysis does present with narcolepsy. Which makes sense as that disorder also runs in my family.
My primary when I was a teen (my ped) was supposed to test for narcolepsy because that's what she suspected.
And she never did.  My new primary was supposed to do a sleep study and I got forgotten until these symptoms came on. So hopefully some light will shine on this soon.
But the psychiatrist said that he's tired of neuros passing the buck because CD (bonafide CD) is rare and almost always follows a traumatic life event or exists with someone who already has a mental health history. And I didn't fit in with anything of CD.

I mean one doctor also mentioned complex migraines. But then all the other "votes" said CD. The psychiatrist said he hopes I get more tests that they certainly didn't do everything they could before calling it CD which he said he hates when they pass the buck.

[supermum_ms]

Hi Lizzy welcome to our little MS community,

Please please give me strength.......... i'll go out on a limb and say no you don't have CD, seriously nope, nadda, zip chance, unlikely, laughable etc etc etc CD ain't the MOST likely explanation from anything you've mentioned, seriously the only thing that could of ever put CD on your possible causes list in the first place was the unfortunate luck of the draw and getting a neuro to lazy to consider anything else!

Is it MS, probably not but you have a neurological history through out the majority of your still young life and 2 of your children have epilepsy too, that neurological poka-dot elephant simply can't be ignored as a more likely 'possible' explanation than the conversion disorder idea, that even after being admitted to psych you still can't even be officially diagnosed with because it's wrong wrong wrong, errr really wrong.

Okay now i've hopefully lightened your mood :D don't be a CD skeptic, just like any potential alternative medical explanation, mental health has well and truly been ruled out, one idea that has been proven to be off your list, so now you need to find the best epilepsy neuro in your area, hmmm kids doc may be a good place to start.....talk to someone who is going to take you history into account and give you some logical directions to follow but do not let this go, be your own advocate and make it happen!

Cheers..........JJ