I want to cross my Ps and Qs

[Jack Burton]

I hope this okay to post here.

I have conversion disorder. I had an abdominal surgery and 2 days later I began trembling head to toe and stuttering, when it didn't stop I was hospitalized. My neck and my left arm kept spasming, I couldn't talk without stuttering, and walking felt like I was moving in jello. I felt fine, no pain, no numbness or tingling. I just couldn't control my body when I tried to anything other than lay quietly.

It was worse when someone would talk to me or I tried to do something, like walk. My eyes weren't dilating together. I even had the classic "hysterical gait" where my torso would wildly rock back and forth while I walked.

I did notice the symptoms were inconsistent, like I could move my legs easily in bed but had trouble lifting them when asked on command. I did have an MRI and an EEG and they were negative. Everyone agreed it was conversion disorder.

My sticking point is that I am not depressed, anxious, or stressed. I have a history of postpartum depression which is handled quite nicely with antidepressants. I have a history of sexual abuse but I went to therapy, and I can think about it and it doesn't upset me. I don't seek attention from doctors, and the whole time I was hospitalized I was quite eager to go home because overall that was my most stressful experience so far in life.

I have nothing to gain by having conversion disorder, and when I try to talk about this with my doctor she tells me denial is normal. I am a bit frustrated. I have no issue going to therapy and working on any issues, I look at it as a great opportunity.

The reason I am posting here is that it has been suggested I may be in the early stages of MS, and being a 30something white woman makes it easier to dismiss me. I am torn, I would say 90% believes and accepts the conversion diagnosis, but 10% thinks it would be prudent to consider the alternatives.

Once I was discharged, almost all the symptoms went away except for some fatigue and occasional stumbling over words. I thought it was gone for good, but last week when it got warm again my neck spasming, walking in jello, and stuttering came back in full force and lasted for a couple days. And my left hand went numb. Once again, I have no idea.

I am seeing a neurologist at the end of the month. Would it be a good idea to request a full cervical and spinal MRI and EP testing to be done? The other odd symptoms that have been going on is my vision dims, and I have frequent migraines.

Would it also be a good idea to track symptoms? My PCP is absolutely convinced I have conversion disorder and will not let me voice any doubts, so I am feeling somewhat defeated.

Thanks in advance. You seem like a great supportive group.

[KoKo]

Hello Jack

Sounds like you have many symptoms that come and go. Sorry for what you're going through with the conversion disorder dx.

It would be a good idea to write down your symptoms - when they appear, how long they last, how often, etc. Take the list to your neuro appointment. This will give the neuro a better picture of what has been going on with you.

Hopefully he will order tests so you can get the answers you need.

Let us know what the neuro finds. We're here for you

Take care,
KoKo

[CasinoKathy]

Hello and welcome to MSWorld!!

Sorry for all your going through- very frustrating I know.

By all means make a list of symptoms to take along with you when you see the neuro. I would think he/she would want to order MRIs and a full blood panel too. Maybe a LP also?

Good luck with your appt, and please let us know what you find out! Blessings, Kathy

[Kj]

Wanted to clarify something...

Conversion disorder is not something that you control for the purposes of obtaining some benefit. It is simply a physical manifestation, beyond conscious awareness, of psychological symptoms. You do not need to be consciously depressed or anxious to experience it because it is like the physical symptoms are taking the place of psychological symptoms.

This is not to say that you do or do not have a conversion disorder. I cannot speak to that. I am just a psychology student and wanted to try to clarify what it is and means. Thanks,

Kj

[Jack Burton]

Thank you everyone.

I think my main issue that my life is good. There were rough times, but for the past couple years things have been wonderful. I just find it hard to believe that I am having a psychological issue out of the blue, especially when in the past I have sought mental health treatment during the rough times. It seems so backwards to me.

I think I will keep the log, follow up with the neurologist, and go from there. If he says it is conversion disorder, I won't push it unless my symptoms stay or increase with psychological treatment. As I told my husband, no matter what happens I have to live and cope with these symptoms until I go through treatment for conversion disorder, and I am not going to frustrate myself further by all the "what ifs." If it's something more, time will tell.

[TNchickadee]

I'm so sorry you are going through this. I have been through this and somewhat still am. I was hospitalized for extreme shortness of breath, extreme weakness, and muscle fatigue in late March. I have a rare autoimmune disease and thought I was having a flare. Labs ruled this out and after a lot of tests, one of the differential dx's was conversion disorder.

This made me so mad I wanted to slap some docs. I inappropriately laughed at their suggestion, which probably only fueled their suspicion. In talking with a counselor I see regularly after the event, she pointed out that my reaction to their suggested diagnosis was inflated by history with my family discounting symptoms of depression as "wanting attention."

I now see how they could come to this conclusion and will be more matter-of-fact when responding that in fact my symptoms are here for the long haul, are transient in nature, and were not precipitated by a traumatic or depressive episode. I do believe that depression and stress can worsen symptoms and I also believe that conversion disorder is a valid diagnosis; however, I think sometimes docs jump to this when they can't explain things and the patient has a history of mental disorder.

All of this is to say that sometimes we fuel their diagnosis by our outraged reaction to such a suggestion because we feel like they are saying, "It's all in your head. Get over it." As stated above, a true conversion disorder is a physiologic response.

I would find a PCP who is more open to other possibilities. From what I have read, conversion disorder usually corrects itself in a few weeks, doesn't hang around long, though I may be wrong.

Good luck and keep us posted.

Danni

[kiragrace]

I've been thinking about your post for a few days now so I decided to reply.

I just wanted to say that I probably would not accept a diagnosis of "conversion disorder" from a pcp.

I just think that this disorder is a little "outdated" and may have been given out to a lot of people who, in fact, had a physical problem that was not yet diagnosed...but since it could not be explained, may have been improperly diagnoses as conversion disorder.

It's probably quite rare to find a person with true "conversion disorder" and its diagnosis can be tricky.....and probably more properly diagnosed by a psychiatrist, who specifically specialized in diagnosing and distinguishing physical and/or psychological symptoms.

[jamilea]

Hi Jack and welcome to MS World!

I felt your pain deeply when I read your post. Of course you can post here, all day long every day if you need to. We are here for you and you are not alone.

I don't know how to answer your questions but I hope you feel better really soon.

Prayers for you mister!

Jami Lea

[jamilea]

I also wanted to mention that your honesty is really refreshing. Keep being that way and remember, you don't have to explain yourself. You know your body better than anyone else and don't let anyone tell you that you're fine. Be your own advocate. I would suggest getting in touch with your local MS chapter for more support. Read and educate yourself as much as you can. http://www.nationalmssociety.org/index.aspx


Hang in there buddy. It will get better