MS

Question

It started about 18 months ago with vision loss in my right eye and the whole right side of my body felt like it was asleep. it felt like pins and needles with pain upon movement. I ended up at a neuro-opthamologist two months later and was diagnosed with optic neuritis. I was treated with solumedrol infusion which helped to some extent.My vision in my right eye settled at 2200/20. I was whisked around between a bunch of doctors and had numerous tests. I had an MRI of the brain which was "normal". I had a spinal tap with the same result. Blood tests were all normal. I went to see a neurologist in the hospital that humiliated me by poking me with a plastic fork saying, "can you feel this?" He said it was probably depression. I had a couple of other more minor "relapses" where I had to use my cane due to numbness and balance problems along with fatigue. I went to see another neurologist at MUSC during a time when I didnt have pronounced symptoms and they did a "more powerful MRI" which was normal as well. He said there was nothing he could do. Again I had a couple of more episodes with decreased feeling and movement with shooting pain. I never fully recovered, always had less sensation and a pretty constant "dull ache" Then about two weeks ago I started to lose feeling and mobility in both my legs. I started off on just my cane and progressed into a wheelchair. I woke up last Tuesday with vision loss in my left eye and panicked. I went to see my neuro-opthamologist and she did some tests and sent me to the ER for "faster results".I had three MRIs (brain, spine, optic nerve) which were normal. The neurologist there told me some BS about "conversion disorder". I then went to the MS center in Augusta GA and was basically told the same garbage.I have hyperflexia, pins and needles, tingling, numbness, pain, slurred speech, I am in a wheelchair and am legally blonde but I guess I "conjured it all up in my sub-conscious mind"

This discussion is related to Do I have MS?.

supermum_ms · Answer

Well this one takes the prize, to now think ON can cause conversion disorder, what a load of %$#%, scuse the language but WTF!

I am not in your shoes but i do know what its like to have a neuro dismiss clinical evidence of disease when the MRI (which didn't use MS protocol) didn't support, wild leap to mental health, though no one has said conversion disorder out loud, its the only mental health issue with neurological sx, so wasn't hard to work out lol. I also have a psych clearance, i dont and have not (ever!) experienced any type of mental health issue, so that leaves me playing piggie in the middle. Neuro saying psychalogical issue, psych saying neurological issue, me still going down hill.

I have a problem with conversion disorder being thrown up here, if you did in fact have conversion disorder, then you would need the appropriate assessments and then ultimately if you did have CD, appropriate treatment, and you've done that so there is no evidence of CD, which should mean that ones been crossed off, not kept because its convenient!!

Even if i ignore all the wrong thinking, the simple act of telling you that "you can walk with a little encouragement" and you needed physical assistance (which is not encouragement lol) to get out a shuffle, then i would say you need to shuffle out the door and find a neuro with an ounce of brain matter!!!! If you stick with this twit, the only way the CD will get crossed off is if you do get committed and the psych dept cant cure you, and even then i'm not sure it would make a difference.

I've been side lined trying to get help, so i get the reluctance to go through it all again, though you really do need to see a new neurologist or you'll not find the help you need and deserve. Think of it this way, you are suffering with life altering sx, 1 Dr dx ON, 1 Dr  (couldn't find his brain) suspected CD so you've had 1 Dr rule that out and now you've got more evidence that its neurological in nature. 

Cheers.......JJ

breb2 · Answer

I am 34 years old and I used to be a medical technologist running samples for some of the doctors who are now treating me like an idiot. My husband takes care of me for the most part and usually types for me. I can see a little bit and can even barely see the computer screen with some software that the commision for the blind installed for me. I have a physchiatrist that actually laughed about conversion disorder. I did have a VEP but the test or the results were never really explained to me. I have not had a PET scan? or a SSEP?  The last neurologist I saw in Augusta did not discount the ON, she just said it was seperate from the other symptoms. She said maybe the ON caused me to have the conversion disorder?!? I did have less severe episodes between the two incidents of ON. I am not really sure how to proceed at this point. She prescribed physical therapy for me but the pain is severe and I cant support my own weight. The neuro asked me to try and walk and two students held me up while I shuffled my feet a little bit. She then said "see, you can walk with a little encouragement" I have mainly been a stay at home mom since my twins were born 3 and a half years ago. I also do web design and worked as an asistant for an attorney. Yesterday and today I have worsened a little bit. I am having speech trouble and it feels like the room is spinning sometimes. I dont know if I can handle any more doctors telling me the same thing. I would be willing to go wherever if I had knowledge of a doctor who would help me!

Quixotic1 · Answer

Hi, and welcome to the forum.  I am so sorry to hear of your horrific problems.  I am even more horrified that the doctors are writing it off to conversion disorder.  There are ways to determine if the person is receiving light or not.  There are ways of measuring whether the signals are slowed coming from the limbs with sensory problems.

This is horrible.

Hyperreflexia can't be faked.  You can try, but it is always pretty obvious.

I hope you have people to read this to you.  How do you work the computer?

Have they performed Evoked Responses - such as the VEP and the SSEP?  Have they done a PET Scan?

Who did they refer you to to deal with this "conversion" disorder?  It would take an in-patient stay as you as "so involved."  I can't imagine the conversion disorder that would progress in this manner.  It is true that optic neuritis very rarely ends in bilateral blindness from the first two episodes, but it is not impossible.

So, what is the plan?

Would you tell us about yourself?  How old are you?  What is your background?  Who is taking care of you?

Quix, MD