Hi Dee and welcome to the crowd here. It takes a lot of nerve for a doc to suggest conversion disorder, since it is a fairly rare psychological problem, if it exists at all.
We have an excellent health page written on this subject and we also have a great HP on negative MRI's. You might check those out.
There is a large number of women here who were told their disorder was in their head, only to be vindiated years later with an MS diagnosis.
I hope we'll see you around here some more - we're a very safe place to hang out and vent.
Hi Deb, I know how you feel. That's what I was told too. I finally was diagnosed though. If you gut tells you that your symptoms are organic- find another specialist to go over things. Make sure you have a copy of your MRI--both the radiologist's report, and the disc. They will be very helpful to compare with a new one. If the new Neuro is reluctant to order an MRI, I would insist. Afterall, it's your health, and your money!
Good Luck, and hang in there.
Oh boy, another person with conversion disorder. And I thought it was rare...how can all these people have conversion disorders? And why is it mainly women who supposedly have this - and they're being told this by their male doctors? These doctors are so freaking lazy it's pathetic. It sounds like you're getting the run-around to me.
I really hope you can find a good neurologist that knows what they're doing.
Good luck with everything,
Hi All - I am new here too to this particular forum. A few years ago, the women on the ovarian cancer forum were some of the best people I have ever met!! I did not end up having it, but did experience many, many of the same symptoms and ended up with a total hysterectomy - with a very frightened doctor when he finally got in there and saw all of the benign disease that I had been "complaining" about!
Anyway, I really hope that neurologists are not dissing women too! I have recently been dx'd with MS - first opinion, but I really like this neurologist. Now I go to NW in Chicago for confirmation and treatment by a University hospital (he felt it would be best being at a bigger hospital that he trained at, which I am good with).
So I am waiting, waiting. I do have SO many comments/questions and will be asking away very soon so I hope that you all are "patient" with me. One thing for now: I do have the PPMS - it seems per the first neurologist - type of MS, but probably had the RRMS several years ago - gone undetected. However, at this time, there is only one lesion in the brain; this neuro says that the placement and size are exactly that of a MS lesion and since our visit was about 1.5 hours (at least) long, I feel he took a very, very good history of me and feels quite confident.
So what do you think about just the one lesion? I also have questions of going all of this alone - doc visits, treatments, driving, etc. My husband - well - never mind. Although I have many things going on physically and mentally with the MS, the optic neuritis is very bad; I lost the center vision in my left eye permanently 18 years ago (no one knew why of course), but two years ago the eye became very tender, sore and the vision is bad and blurred now.
I look forward to lots of discussion!
Sorry - I will post as a new thread....... :)
Oh yes Dee, the majority of people here have heard this by word or implication. Those who haven't are mainly members with 'classic' MRI presentations or a penis. Notable exemptions to this general rule (which is entirely my personal opinion) are those seen in Veterans facilities or the UK. Government funded health care hates to diagnosis MS - period.
So, what kind of plan do you have in mind now? Do you have a decent PCP? If not, I suggest you find one a.s.a.p. Look for someone that might help you with effective treatment of your symptoms even if you never get an accurate diagnosis.
Another avenue to consider for a cause (or to eliminate one more thing from the realm of possibility) would be to investigate sleep disorders. They can cause a huge variety of symptoms.
Then, if all the docs still insist on CD you might at least insist on something pharmaceutical to make your brain believe this is a happy state of affairs that should be of no concern to you!
Sorry if this comes across as negative. I do mean to be supportive but I think my inhibition gate was released when I read your Freudian evaluation. Love it!
Heard that before. The stupid doc told me it was either ms or depression, I.e. CD. my psychiatrist was pissed. H said that are very few "real" cases of conversion disorder.
A few months later diagnosed with MS.
hang in there and don't let anyone make you think you are crazy!
Thanks for the suggestions, Lu. I read the articles you linked up and found them quite vindicating. I will definitely stick around this site to pick up as much support from you all as possible!
I hope you are doing well, Dear.
God bless and keep looking UP!
TY, Tammy. Your encouragement is greatly appreciated. I hope you are well!
TY for your kind words, Kelly. If things do not work out w/this doc, I will certainly keep going until I can find someone who will actually treat me for whatever is wrong w/me instead of just passing me off to another doc.
Stay well and keep looking UP!
Hi Lilly! I am happy to meet you so soon, as we have both just joined this forum. I am wishing you all the best, and, I too, am looking forward to much discussion about all our conditions and lives.
God bless you and keep looking UP!
Thank you, Mary! Your note made me smile-something I have not done too much as of late. I do have a WONDERFUL PCP who says I DO have MS, but wanted me to be seen by a "specialist." I have been sent to one after the other to rule out this and that. So far about half of the docs say MS and the rest say they are not sure yet-what a CRAZY ride this is! I will have my next app. w/the MS "specialist" on Dec. 7 to follow up and receive the LP test results. But this doc already told me that 15% or more of MS patients do not have a positive LP, whatever that means? If I am not satisfied w/the way this doc treats (or does NOT treat me-lol), then I am prepared to move on after reading about how many of you on this site have had very similar experiences. I KNOW the perfect doc for me must be out there somewhere-maybe Freud reincarnated! NOT-LOL!!!
Keep looking UP!
Thanks-I hear you loud and clear. I AM NOT CRAZY!
God bless you and keep looking UP!
"15% or more of MS patients do not have a positive LP, whatever that means?"
What they primarily looking for is the presence of oligoclonal bands in you CSF and the absence of those bands in you blood (serum). the bands are a pattern of protein organization. If you have them in your CSF but not in your serum it can be an MS confirmation. I've read that as many as 90% of people with MS have oligoclonal bands.
Current Newsweek article on conversion disorder:
TY for your answer, Kwarendorf. So...if I do NOT have these bands and proteins, but still have inflammation showing on my MRI (thoracic), does that mean I DO or DO NOT met the "criteria" for MS? Sorry, I am still a bit confused by all this, what seems to me as "double-talk", I am trying so hard to make sense of this all. I only know, I can feel the pain in myself and in you all.
Stay well and keep looking UP!
TY, Nancy-I'm going to read the article you suggested right now : )
Stay well, Dear!
Keep looking UP,
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.
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!
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...
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!
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!
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!
TY for your encouragement. I will keep hoping to find that "one special doc" who will make "All This" just GO AWAY!
Hope you are doing well : )