Conversion Disorder-Seriously???

[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

[marylou63]

Thank you, I was beginning to give up the will to fight on but now with renewed vigour I will fight on but will take my very supportive new husband with me!  If he vents what he feels about my diagnosis we should be in for an entertaining consultants appointment.
Thanks once again Kelly 97

[marylou63]

Thanks for that ....but I hasten to add I'm not alone in all this. I have a wonderful supportive new husband and family. My family have always supported me and never believed the diagnosis. It's just on the day I went to the Neurologist I wasn't expecting a diagnosis just a review of my symptoms and where to go next. So Accordingly did not take anyone with me. The diagnosis for someone who has never had any mental health issues and a past managing a very stressful job competently. All my relapses follow viral or bacterial infections or surgery. my symptoms are worsened considerably by eating wheat dairy and highly processed foods. I also have optic neuritis.  Everything that I read about  CD or as my diagnosis read functional neurological disorder does not apply to me. When I went to see my Dentist recently he openly laughed at the diagnosis and said 'you are the most grounded and level headed person I know'. I am not intending to offend anyone that genuinely has CD but I know for definite that this diagnosis is wrong for me. If anyone who was an MS specialist read my medical history  (2 volumes of) and put the pieces together with the MRI scan and Optic neuritis it wouldn't take them long I'm guessing.

[marylou63]

Thank you, I was beginning to give up the will to fight on but now with renewed vigour I will fight on but will take my very supportive new husband with me!  If he vents what he feels about my diagnosis we should be in for an entertaining consultants appointment.
Thanks once again Kelly 97

[immisceo]

Unfortunately, I think it takes a lot more stamina to get a proper look-in in the UK due to the nature of the NHS and its funding constraints. You have not been well served by the professionals who have seen you.

I wouldn't get too tied to a certain diagnosis. Many physical issues and diseases mimic MS, and it may not be what's ultimately causing your collection of symptoms.  But at the young age of 50, you deserve to have your severe symptoms comprehensively examined.

It is unfortunate that you are in the position of having to fight these battles alone, but if you can summon the inner strength, please consider pushing for a fresh neuro consult, preferably with an MS specialist if at all possible.  

[anon07072023]

What the heck is wrong with these doctors??? It's not all in your head. It makes me so mad when I hear stories like this. I initially presented with lesions in my spine & they said no lesions in my brain. I continued to have symptoms, worsening of symptoms, & new symptoms. No one listened. I ended up leaving & traveling to an MS Center. The neuro there looked at my MRI & said they missed seeing 6 lesions in my brain & 3 T1 black holes. I was then given the diagnosis of MS. Don't give up.

[marylou63]

I have read your post with tears rolling down my face. I too am a teacher or rather was. I have had very clear and scary relapsing remitting MS symptoms for 17 years and have an aunt who suffered in exactly the same way who was diagnosed with RRMS. After a really bad relapse that ultimately ended in divorce .. and I hasten to add it was in that chronological order I was finally diagnosed with Mixed dissociative ( conversion) disorders. I have 3 clear lesions on my spine from my MRI. I am presently unable to walk unaided, have poor vision, tremors, numbness, pins and needles, lack of bladder and bowel control and poor memory etc. My GP has never heard of the condition so I decided to read up on it. It is soooo far removed from what I am going through and what is occurring with me it has now made me question everything. I may be being sceptical but does anyone think it could be to do with funding as apart from CBT and taking Gabapentin for the spasms I have no support or help to get better. I am just left in Limbo... and they wonder why I feel just a little fed up. The Local Neuro thought I was just a time waster and as I went on my own I had no family to back me up. He wrote to the neuro at Kings and the report said that the 3 lesions were not connected with my symptoms and he felt it was psychological. Where do I go now ? I know what is wrong with me and so does my family but I have been labelled as some dysfunctional depressive malingerer. I know exactly how you feel believe me. marylou63