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

[DebDJ]

TY, Lill-

I am so sorry you have had such a similar bad experience as me.  I am happy to discuss our ongoing journeys anytime you feel the need to vent or be encouraged, as you have encouraged me to continue to be an avid advocate for myself.

Hope you have the answers you are seeking soon.

Keep looking UP!

Dee

[Guitar_grrrl]

Welcome, DebDJ, and lilly608,

Don't automatically dismiss the old school guys - my neuro is 78 years old, and has seen it all!  He diagnosed me within 6 months, with a negative LP.  his diagnosis was made by a careful history and physical (I have bilateral Babinski signs, hyperreflexia, and ataxia) and a suggestive MRI (old lesions, though some quite large).  

Some of the "old guys" are sharp!  My point?  Age of neuro doesn't matter.  Blowing you off, suggesting CD, etc., DOES!

[lilly608]

Wow - I know MS is hard to dx, but I am very sorry to hear that some neuros are treating women the same way that many ob/gyns treated me; the pain could not be coming from an ovarian cyst or the "mild" adenomyosis I had.  Obviously testing misses alot of things, but when a woman is sitting there stating her pain (must be coming from your back), her bloating (oh, you are just gaining weight), her awful feelings of malaise (you are depressed), and the horrific monthly cycles that required all sorts of absorption - every 10 days (you must be approaching menopause - at 41!!!), why don't they listen?!  Every TV commercial, every article, every study, etc. tells women to go right to the doctor with symptoms of any sort of disease, cancer; yet when we do, we are passed off!  Yes, when my doctor finally did the surgery, I was a mass of disease, cysts (everywhere, including my tubes), etc.  He was then very nervous for me (and his (mal)practice).  Good for him that I turned out to be fine once it was all taken out!

Now, however, with the neuros and the MS dx's of women (have not read enough to know if men are getting the run-around too) makes me very saddened that this occurs in many specialties of our bodies.  

I persist, I am my own advocate (my pain doc loves this, really), and I will not ever again let them tell me I am "depressed" or this is the cause of all my problems.  It is rather a condition of my very real health problems.  So make me well, doc, and I won't be depressed anymore; come on - just try doing the opposite of what you always have done!!

Oya!  I have a very long road ahead of me, but I really do feel fortunate that I believe I have found a neuro that believes in me and that he is referring my treatment options to another neuro that will believe in me.

I feel so bad for all of you that get the run-around; as I have stated, I have been there/done that and it is not a pretty site!  So please, please, ask me any questions you like regarding how to be an advocate and get past the old-school docs.  I actually was going to start a blog/book on this, along with my advocation (word? - don't know) from my own disability experience (SSDI), which I won.

I am in no way at all saying that any of you have not been your own advocate, or that you haven't gone through your own bad experiences; I am merely offering to discuss this junk with you because I truly know how awful doctors can make you feel (hmm.... funny sentence - not really)!

All I need help with (yeah - "all") is my old-school supposed family who all think I am nuts for being such a strong advocate; they don't think I should challenge so strongly, I guess; who knows!  But they just don't get that I have not made up all of these things that are wrong or have been wrong.  I am miffed!

God speed and peace to all!

Lilly

[Alderica]

Ooo those words "conversion disorder" are a red rag to a bull! I've been having MS symptoms since I was 27 (I'm now 42), and yes, the MALE neurologists decided it was conversion disorder. I was finally vindicated as far as my so-called "psychogenic vertigo" was concerned because an ENT doctor who was rather more observant than most finally diagnosed me with vestibular neuropathy (only took 15 years....). I even spent 10 weeks in a psychiatric clinic with this stupid diagnosis. I still need answers, because the vestibular neuopathy does not explain the tingling, numbness, fatigue, weakness etc.
Thankfully I have a new (young female) GP who has reopened my case, as it were, because she says I am "just not the psycho type". However, the neuro she sent me to is one of the old school - as I posted elsewhere on here, my neuro tests were "normal" (despite nearly kicking him in the groin because my patellar tendon reflexes were so hyper - must try harder next time *grin*), and the periventricular lesions on my brain are also "normal, everyone has them"). Just awaiting the results of a LP now,then I'm off back to the hospital to find a younger neuro who actually manages to think outside the box.
I sincerely hope you get a proper diagnosis very soon...

[DebDJ]

Thanks for sharing your experience w/me, Kelly.  I will let you know what my results are when I get them on the 7th. Hope all is well w/you!
Dee

[anon07072023]

You can still have MS without the extra oligoclonal bands in you CSF compared to your blood serum based on your LP & the blood draw that they did.  I don't have extra o-bands in my CSF, but I still have a definitive diagnosis of MS. So....that means your LP can be NEGATIVE, yet, you could still have MS.

-Kelly