I don't know where to start. I have been to the ER twice with what feels like a band around my chest smothering me. They sent me home. This past Friday I felt my right arm go weak and I was nauseated. I went to the ER and they sent me home. Then Sunday I started having these episodes that I can only describe as a seizure. It started in my lower face and went down to my legs. It was paralyzing. I could not communicate during the episodes. They came in waves flowing over me, squeezing me. One after the other after the other lasting for 30 hours straight. Once it subsided I had dysarthria and aphasia. After several hours it began again and it affected my left side. My left foot went numb. I was weak and so tired. I then could not walk on my left leg. I read i had sensory ataxia. MRI and CT scans were ok. So I was diagnosed with conversion disorder and sent home. BEFORE this happened I had several signs over the last year. I had 30 hours to think about it. I can read a book and not be able to tell you what it is about. I could go to a new movie and forget the name of the movie. I have electric shocks in my neck, spine, and my head. Tension like feeling on the right side of my head that causes me so much discomfort. Then Going to do something and forget what I was going to do. Dropping my words when speaking lasted for several weeks. I have voice/ word scanning. I also get this feeling in my shoulders. I could never describe it until I read up on MS. It feels like a cape on my shoulders. Like Superman! This vibration I get in my head that goes down into my left leg. Someone on U Tube has that with their MS. I thought I was going nuts. I am home unable to drive or go to work. The waves are now affecting my left side. I noticed my hand clinches into a tight fist when these waves happen to me. I am walking better. My neuro will see me in 2 months?! I don't think so. One thing that worries me is the band around my chest that I feel so often. Another thing. I started developing UTI's a year and a half ago. I was developing urinary retention all of a sudden. Oh yea, when I touch my face it sets off the shock sensations and exaggerates them. I have dysphonic speech and scanning speech. I take cool showers because I can not stand the heat. That has been going on for several years now. At work i had to write simple medical paragraphs. Someone brought it to my attention about mispelled words, run on words, and sentences. Then i started slowing way down and proof reading them. Guess what? It continued. Please help me feel better about myself. I am afraid, so afraid of the chest squeezing. I am also an RN and I know the neuro is wrong. I am not on any medicine except the anti anxiety medicine they put me on and it makes the fatigue worse. I appreciate anything you have to offer. Jamie
Welcome to the forums where you will find continuous support emotionally and educationally.
I am sorry you're going through all of this and to have the stigma of "conversion disorder" placed upon you must be infuriating when you know it is something other than that. I'm not saying that "no one" ever gets conversion disorders, malingering, psychogenic or somatoform disorders, but I am saying that when they have nothing to go on ie: blood work or diagnostic tests such as MRIs and lumbar punctures, the doctors tend to hold onto the psych aspects.
On one hand, you can understand and you're compliant by taking the anxiolytics even though they contribute to your fatigue.
You know when something is wrong with your body and I assume as you're a RN, that you would admit if there was anything psychological going on and would do something about it. Why not right? Mental illness is a disease too just as diabetes, thyroid conditions,etc.
My thoughts on this is to go and get a second opinion.
I do have a question, when they did the MRI, was it only of the brain or did they do cervical and thoracic too?
Again, welcome to the forums and please let us know how your appointment goes in two months, and if you make a new appointment with a new Neuro, let us know about that too.
I second LisaJF's suggestion to get a second opinion from a different neurologist. Some folks around here have been to multiple neurologists to get a diagnosis of some sort. And remember, MS has many mimics. It may be something different than MS, but you at least deserve a diagnosis of SOME kind!
Hello Lisa..Its so funny everything that you wrote about fits me to the tee.Before being Dx.i was haveing problem for three years and i was just dx Nov,2012. I was also told in 2010 that i had converion disorder but i was like you on that note i new that something was really wrong and it was not conversion disorder.my system were really bad and had to be amitted to the hospital because i was haveing a relapes a d believe me it was'nt pretty. The ms had attack eyes, my speech and i could not walk my balance was off andi had another bladder infection this was my third infection ln a year.I am now takeing pysical therapy,and speech therapy and occ therapy at home.Im starti g to feel a lot better thank God.I have startec on copaxion 20 mg injection once a day .I will take it one day at a time and one step at a time.Praying that you have gotten your dx. About now and you are doing well. Praying that it wjll work out.
Hi Jamie and welcome to our little MS community, others have brought up mimics, our health pages etc but i would like to mention the importance of getting your mental health fully assessed, now that the CD card has been thrown down.
I look at it this way, until the CD card is taken off the 'possible' list, it will stick to you like glue and getting anyone to look beyond it will be difficult and may cause you even more unnesesary frustration. So its a lot better for 'you' overall, if you have the diagnostic evidence to prove, that mental health is not the issue.
General anxiety or Depression is not the same as Heath Anxiety, and Healthy Anxiety is not the same as Conversion Disorder but its become surprisingly easy for alternate causes to be more readily dismissed, if a person is already dx with one of the more common mental health conditions. It seems really strange to me, when a person doesn't even have a history of mental health, that CD even comes up at all. CD is quite rare so why it even gets mentioned half the time, is just mind boggling imho.
So my advice to you and anyone else in a similar situation, is to get the proof in writing that its 'not' mental health, get it fully investigated just like you'd do for any other possible causation. It wont hurt anyone to do this and in the long run, it may actually prove to be rather helpful.
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