Neuro--another direction?

[mystical_rain]

Thank you for taking my question.  I am a 36 yr old female and in what I thought was good health. I work as a nurse. In April 2011, I woke up with a numb/tingling feeling on the left side of my body and was experiencing difficulity walking and talking.  My family took me to the ER and I where I had a negative CT scan.  The ER doctor felt strong that I had experienced a stroke, so he admitted me that day.  I had a MRI of the head and neck, which also came back negative.  The neurologist recommended a lumbar puncture, which returned clear.  It was decided at that time I might have transverse myelitis and I was given IV steroids for 3 days, and then discharged home on oral steroids.  Once the steroid dose ended, my condition seemed to get worse again. I made a follow up appt in the clinic with one of the neurologist (the one that I saw the most in the hospital only sees patients in the hosptial).  The neurologist in the clinic didn't agree at all with any of the hospital findings and felt all of my symptoms were stressed induced and diagnosed me with conversion disorder and recommneded counseling (which I have done and continue to do......if I didn't need it before, I do now).  As part of my hospital work up, the neurologist made a referral to a MS specialist.  The MS doctor has been "iffy" on whether or not he thinks this is MS.  The MS doctor did prescribe Decadron 80mg daily for 5 days and I had good relief from my symptoms for about 5 weeks but they slowly started coming back.  He did repeat my MRI in Sept and said there were some white matter changes, but no lesions.  He also said that those changes can be normal in a healthy person, but the radiologist read it as abnormal compared to my MRI from April.  

Since this, I have been diagnosed with a couple of things.  My eye doctor diagosed me with optic neuritis in my left eye.  I have problems with it twitching and drooping and blurry vision.  I am scheduled for a vision evoked potential test within 2 wks.  

Also, I was experiencing some chest pain/discomfort and shortness of breath  I had negative workup initially, so my cardiologist recommended a cardiac MRI.  I was diagnosed with microvascular dysfunction.  

I still have problems walking, talking, carrying on a conversation. It almost feels like I'm in a fog or a cloud at times.  I fall frequently, so I have to use a walker. Until April, I never had migraines and now if I without my medications, I would have them frequently.  
My question is: Is it possible for my neurological problems and the cardiac diagnosis to be related?  And Can you tell me any other direction I might go for answers? I really want to get to the bottom of this.  Thank you.

PS: Sorry I typed so much info here :)

[mystical_rain]

Thank you both for your advice.  I was tested for Lupus and Lyme disease and both came back normal.

  I do continue seeing my therapist, and he has actually been a big help in dealing with the fact we don't have a true diagnosis yet.

I have copies of my MRI's on a CD and I actually carry them in my purse at all times just in case I need them in an emergency situation.  My medical background has taught me to trust and not to trust, if that makes sense.  When my doctors use terms that I'm not sure I'm understanding correctly, I ask them to write them down.  I want to learn as much about it as possible.

I am thankful I have strong family support.  They are determined to take me where ever we need to go to get the right diagnosis.  It is just so hard at times that we don't have a diagnosis.  

I'm sorry it took me a few days to respond back.  I actually had a flare up again.  My left eye is twitching and drawn, balance is off and I'm falling, can't think cleary, and speech is messed up.  Praying for answers soon.

[Buffy1970]

I was told by a top neuro that doctors have a hard time accepting young people can be sick... .  

Keep track of things even if you're told it isn't necessary (don't expect to remember everything).  I rec a computer diary/log and the trackers this site offers.

With your medical background you are probably familiar with medical terms but make sure you know the terminology your doc uses for your symptoms.  I have found out after the fact that my doc and I were NOT talking about the same thing and it can make a big difference.

Have you had blood work for everything else; including lupus and lyme(s)?  No one tested my vit D in beginning and I've read about copper def (? can't remember the details).  A thorough workup in the beginning should help with the wait and see process neuros seem to like.

Get in the habit of reviewing your doc's notes and keep a copy of any imaging.  I have found errors in notes; tests not performed but supposedly "normal" and things mis-stated or left out entirely.  No matter how much your doc cares they will not remember your details without accurate notes and it can lead to problems down the road.

Most of all Believe in Yourself.  

You probably know that if you tell someone something enough times they begin to think it's true, ie "you're just stressed".  Docs telling you you're just stressed may be their way of trying to keep you from worrying too much, but I think it's almost more stressful that being sick.

Last, I didn't use internet to research what was happening to me b/c I didn't want docs to think I was reading symptoms and then having them.  I think this was a big mistake.  Educate yourself with reliable info.  You will be your best advocate no matter what your illness turns out to be.

Good luck!

[Lulu54]

Welcome - you typed just the right amount here for us to get started.  Conversion disorder?  Really?  Do you know how rare that really is but how often it is used?  WE have a great health page here on that very topic that deconstructs the whole theory -

http://www.medhelp.org/health_pages/Multiple-Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36

See the psych and get the all clear that you are not suffering conversion disorder so you can get on with finding answers.

Microvascular dysfunction is a topic I know because I have angina, perhaps cardiac syndrom X and had a heart attack due to unknown causes. I have NONE of the usual cardiac problems as blocked arteries, etc.   But microvascular dysfunction can also be a very quiet problem that causes little distress.  



Neuro malfunction most definitely can be connected with cardiac issues - lack of oxygen to the brain can create havoc as you know. Vascular insufficiencies can also ischemic changes i nthe brain.


That said, I definitely had a cardiac event AND I was diagnosed with MS the same year.  So don't think you can only have one problem at a time.


Optic neuritis is a clear sign that something in your system is attacking itself and you need answers to get it to be slowed or stopped. ON does NOT occur with cardiac problems and is a separate disease process entirely.

I hope you will continue talking to the therapist and get the all clear on the conversion disorder talk so you can concentrate on these other problems.

Stick with the MS doctor and don't go back to the general neuro is my advice, but I'm no doctor.  Good luck and keep us posted with your updates and feel free to ask questions.

be well, Lulu