Conversion Disorder or something else?

[Kayetlyn]

I am going to write a lot of information. A few months ago, I was having on and off stiffness in my right arm while I was at work. There was a time that I had double vision while working. I knew my blood pressure was high (177/122). I have had high blood pressure since I was 17, I am now 20, and I have been to numerous doctors that say they do not know why I have high blood pressure. Because of this I did not see anything out of the "norm", i.e. high blood pressure and blurred vision at times/"seeing stars". When I was driving home, I found it hard to operate my car normally. Turning the wheel was hard and I just felt "off". When I got home, I told my mom what was going on and she took me to the ER. On the way there, my arm was flexed at a right angle and I was unable to get it out of this position. It took about 35 minutes to get to the ER. I walked into the building just fine, but while waiting in line to check in, my other arm also locked up along with my neck. My neck was locked tilted to the right where I was looking at the left. The paralysis went into my jaw. By this time, I was talking as if I had down syndrome and I was not able to figure out words that I wanted to say. I was able to understand EVERYTHING that people were saying, I just could not figure out the words to answer long questions. When the nurse asked me the normal cognitive questions (where are you, who is the president, what is the date, etc.) I answered all of them correctly and in a timely manner, but when the doctor came in, I had to have my mom tell him what was going on. Luckily, I told my mom everything that had happened on the way to the ER just in case I was not able to. When the doctor had me push on him, my left leg would not lift up or push. This would happen all over my body at different times. While waiting on testing, my mom looked at my pupils (she is a nurse) and they were not responding correctly to the light. My left pupil was a 3-4 and my right was a 5-6 (for those medical people out there) and reacted slowly. They did a CT that came back normal and then did an MRI. The MRI shows many lesions and came to the conclusion that I have MS. I was referred to a neurologist who I went to that following week. The neurologist said that it is not MS, that it could be my medicine (low dose birth control and Paxil). She told me to stop taking them, wean off the Paxil (I was currently taking 40mg). I started both medications about 2 months prior to all of this happening. I have been on birth control on and off for 8 years and I have taken different medication for depression when I was a young teenager with no issues. That night I was lying in bed in extreme pain (in my side and lower back on the left side). It was so bad that I was crying. By the time that I got up to get a Kleenex, I was having a hard time walking. I was very slow and weak. I called my mom to tell her what was going on and we ended up going to a different hospital. When I was walking into the hospital I was having drop foot on my right side and it took me a little while to fill out my information. By the time, I got back in the ED, that doctor asked me to walk and saw the problems I was having walking and then my right leg started shaking uncontrollably. They tested my sensitivity on my legs and I had normal feeling on my right leg, but my left leg on top felt different. I could feel the cold on my right leg but not my left. That ER doctor said that I was WAY past a ER doctor from the beginning. He admitted me to the hospital where they did another MRI that morning. They did it of my brain and cervical and theoretic spine. Everything came back normal except the lesions in my brain that they had saw before. I ended up having a panic attack where they administered .5 Xanax, but within less than 30 minutes I started convulsing. I believe that it was a seizure (I have some video of this too). That neurologist in that hospital said that it is definitely not MS (so I have 1 MS diagnosis and 2 not MS). He released me on a B12 deficiency (insert WTF here). When I was in the hospital, the only person who saw my problems walking was the ER doctor. Because of that, we started recording me walking when I have problems. It was so hard to walk. It took everything I had to walk. Fast forward a few weeks, I went to another neurologist and he said it is not MS (1 yes 3 no) and that it is textbook Conversion Disorder. We showed him the videos and he said, "oh yes this is defiantly conversion disorder".  He has ordered me to go to a neurological psychologist in November, keep in mind that I saw him at the beginning of May. I have been taking hydroxyzine pam 25mg twice a day for a few weeks and I have been able to walk. Not being able to walk was off and on before the medication, and so far I have not had problems walking. I have had pain daily, headaches daily, occasional problems breathing (as if my lungs are stuck and can hardly move), when I wake up I am stiff and in pain, I have been still having occasional twitching, and I have had some difficulty with shaking.
What I want to know is if I should agree with this Conversion disorder diagnosis or keep looking for other answers. Is there anyone who has had the same issues? I am new here so if there is a way to post the videos of what has been happening to my profile I will! If I have Conversion Disorder, great, but if it is something more serious, I want to know so I can start treating it now. If you have any questions, PLEASE ask. I am sure I left out something. Thank you everyone!

[supermum_ms]

Continued....

From my understanding I think you are highly likely to be mistaken in the belief you have "1 yes 3 no", you have never actually been officially diagnosed with MS....

First ER, first MRI, first neurological opinion: "I was referred to a neurologist who I went to that following week. The neurologist said that it is not MS"

Second ER, second MRI, second neurological opinion: "ER doctor ...admitted me to the hospital where they did another MRI that morning. They did it of my brain and cervical and theoretic spine.....Everything came back normal except the lesions in my brain that they had saw before.....That neurologist in that hospital said that it is definitely not MS"

Third neurological opinion: "Fast forward a few weeks, I went to another neurologist and he said it is not MS"

All 3 of the neurologists you have mentioned seeing, have been of the same opinion that you don't have MS.

It's possible you have made the assumption of being dx with MS from yourself misinterpreting the differential suggested within your original MRI report...

"The MRI shows many lesions and came to the conclusion that I have MS"

It's also possible the misunderstanding could stem from MS being mentioned at some stage by an ER related physician but to be clear in why i'm of the mind that it's highly likely you're mistaken in believing you were ever diagnosed with MS.....you've not mentioned anything within your detailed post, of you ever seeing a neurologist in the time frame 'before' seeing the first neurologist you were referred too.

The time between having the first MRI and then seeing the first Neurologist who told you you don't have MS is very short, and IF what you were experiencing was caused by neurological conditions like MS, you would be expected, especially with a very short time frame of days, to of had some clinical signs of neurological abnormality and you don't mention anything about your neurological assessments actually being abnormal.

IF the 3 neurologists who have clinically assessed you didn't find anything neurological abnormal and both your brain MRI's and spinal MRI didn't have any of the suggestive or consistent MS lesion locations, size, shape, demyelination etc etc etc then neurological conditions like MS are very low on your list of potential causations, with all the alternative causation a lot more likely.  

Whether Conversion disorder is correct or not, honestly requires the expertise of someone like the neurological psychologist you've been referred to see in November. CD may be completely wrong even with the traumatic history you've mentioned in another community but IF after your psych testing and assessment, something like CD does turn out to be the correct diagnosis, please keep in mind that IF it is a mental health condition your dealing with, whilst it may not be the same type of medical condition as MS, it is still serious and there are various medication treatment options available, behavioral therapy, specific condition education etc etc to help you....  

Hope that helps......JJ

[supermum_ms]

Hi and welcome,

I am re-posting your question with spaces, people with MS commonly have visual and or cognitive issues which makes reading large blocks of text very difficult if not impossible to read......

"I am going to write a lot of information. A few months ago, I was having on and off stiffness in my right arm while I was at work. There was a time that I had double vision while working. I knew my blood pressure was high (177/122). I have had high blood pressure since I was 17, I am now 20, and I have been to numerous doctors that say they do not know why I have high blood pressure. Because of this I did not see anything out of the "norm", i.e. high blood pressure and blurred vision at times/"seeing stars".

When I was driving home, I found it hard to operate my car normally. Turning the wheel was hard and I just felt "off". When I got home, I told my mom what was going on and she took me to the ER. On the way there, my arm was flexed at a right angle and I was unable to get it out of this position. It took about 35 minutes to get to the ER.

I walked into the building just fine, but while waiting in line to check in, my other arm also locked up along with my neck. My neck was locked tilted to the right where I was looking at the left. The paralysis went into my jaw. By this time, I was talking as if I had down syndrome and I was not able to figure out words that I wanted to say. I was able to understand EVERYTHING that people were saying, I just could not figure out the words to answer long questions.

When the nurse asked me the normal cognitive questions (where are you, who is the president, what is the date, etc.) I answered all of them correctly and in a timely manner, but when the doctor came in, I had to have my mom tell him what was going on. Luckily, I told my mom everything that had happened on the way to the ER just in case I was not able to.

When the doctor had me push on him, my left leg would not lift up or push. This would happen all over my body at different times. While waiting on testing, my mom looked at my pupils (she is a nurse) and they were not responding correctly to the light. My left pupil was a 3-4 and my right was a 5-6 (for those medical people out there) and reacted slowly.

They did a CT that came back normal and then did an MRI. The MRI shows many lesions and came to the conclusion that I have MS. I was referred to a neurologist who I went to that following week. The neurologist said that it is not MS, that it could be my medicine (low dose birth control and Paxil).

She told me to stop taking them, wean off the Paxil (I was currently taking 40mg). I started both medications about 2 months prior to all of this happening. I have been on birth control on and off for 8 years and I have taken different medication for depression when I was a young teenager with no issues.

That night I was lying in bed in extreme pain (in my side and lower back on the left side). It was so bad that I was crying. By the time that I got up to get a Kleenex, I was having a hard time walking. I was very slow and weak. I called my mom to tell her what was going on and we ended up going to a different hospital.

When I was walking into the hospital I was having drop foot on my right side and it took me a little while to fill out my information. By the time, I got back in the ED, that doctor asked me to walk and saw the problems I was having walking and then my right leg started shaking uncontrollably.

They tested my sensitivity on my legs and I had normal feeling on my right leg, but my left leg on top felt different. I could feel the cold on my right leg but not my left. That ER doctor said that I was WAY past a ER doctor from the beginning. He admitted me to the hospital where they did another MRI that morning. They did it of my brain and cervical and theoretic spine.

Everything came back normal except the lesions in my brain that they had saw before. I ended up having a panic attack where they administered .5 Xanax, but within less than 30 minutes I started convulsing. I believe that it was a seizure (I have some video of this too).

That neurologist in that hospital said that it is definitely not MS (so I have 1 MS diagnosis and 2 not MS). He released me on a B12 deficiency (insert WTF here). When I was in the hospital, the only person who saw my problems walking was the ER doctor. Because of that, we started recording me walking when I have problems. It was so hard to walk. It took everything I had to walk.

Fast forward a few weeks, I went to another neurologist and he said it is not MS (1 yes 3 no) and that it is textbook Conversion Disorder. We showed him the videos and he said, "oh yes this is defiantly conversion disorder".  He has ordered me to go to a neurological psychologist in November, keep in mind that I saw him at the beginning of May.

I have been taking hydroxyzine pam 25mg twice a day for a few weeks and I have been able to walk. Not being able to walk was off and on before the medication, and so far I have not had problems walking. I have had pain daily, headaches daily, occasional problems breathing (as if my lungs are stuck and can hardly move), when I wake up I am stiff and in pain, I have been still having occasional twitching, and I have had some difficulty with shaking.

What I want to know is if I should agree with this Conversion disorder diagnosis or keep looking for other answers. Is there anyone who has had the same issues? I am new here so if there is a way to post the videos of what has been happening to my profile I will!

If I have Conversion Disorder, great, but if it is something more serious, I want to know so I can start treating it now. If you have any questions, PLEASE ask. I am sure I left out something. Thank you everyone!"