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[aura3]

I am a 31 year old female.  3 months ago I started experiencing a numbing feeling over the left side of my face.  This started about mid day. The next day the numbing felt more intense and I began to become concerned.  I called my Dr. to only to be told to go to the Urgent care.  While in the urgent care my right eye began to twitch uncontrollably. I was given some medication and released. As the day went on I began to fell worse.  My face became more heavy and a Severe head ache began on the left side of my head. The next morning I went to the ER only to have the Doctor stare at me as if I had lost it, (or perhaps she had) I was given a CT scan and released to a neurologist to get an MRI.  Not to the ER Doc's Help it would take 3 weeks before I could even get in to see the Neurologist. For the next to day I sat it out. The numbing was intense on the left side of my face and the eye twitching at time was unbearable because of the lack of control.  Needing answers I went to another ER This time the admitted me, did blood test, MRI of the brain, EKG you name it.  I was then released the following day with the diagnosis of Bell's Palsy.  These was by the Neurologist that check my taste-buds to find that on the left side of my tongue I was unable to taste. By now the right side of my face was droopy. The only question he had to the diagnosis was that I could wrinkle my forehead on both sides which is not normal with Bell's at all. Needless to say I was sent back to the ER for a Spinal tap a couple of days latter at the Request of the Neurologist.  So far all test have come up negative and still no answers to how I am feeling.  This all started Mid Feb. and now it is mid May.  Two weeks ago on a Friday about 10:30 in the AM I started to have a strange Numbing sensation on the left side of my body.  My Foot, leg, arm, and hand were now tingly.  I had just seen a new neurologist for a 2ND Opinion the day before and called the office with the new symptoms.  I did so to be sent back to the ER encase of a stroke.  I know I am not having a stroke but I went. The new neurologist ordered an MRI, MRA, MRV, of the Brain and Spine. I had not yet been able to set the Appointment with the imaging center.  So when I was at the ER they went ahead and performed and MRI, MRA, MRV of my Brain (Note: not my neck) as well CT scan, EKG, and X Ray of my chest.  No findings still unknown what it is that I have.  So I went back to see the 2ND Neurologist with a numb week left side and same facial issues that I have been having.  Except at times I get this sporadic nerve spasm that cascades across my left cheek.  as well as my left eye twitches at times.  I have been put on Lyrica, for the numbing that turned in to a burning sensation at times.  Also He stated that I have a vain that showed up on the MRI (similar to a Vacuous vain) that he felt the only thing it could ever cause would be a mild seizure.  He stated that he didn't want to give me anything to mask the problem but hopes it just goes away.  I want it all to go away to.  But I want answers as to Why I have spent the most part of 2008 feeling like this.  I had my first visit with my 3rd Nero. He is a lead Doc at Barrows Neurological Institute .Neurologist in I am in hopes he could shed some light on the situation.  I has issued several test including an MRI of my Neck and Spine. He has also sent me to do a sleep deprivation test as well as a Angiogram. He has also scheduled me to have another LP do to the amount of fluid they took in the first one was not near enough to rule out ms.  I go back to find out all the results on the 24Th of June.  My New Neurologist  is confident he will find the answers and have some kind of Diagnosis on my next visit. I have my fingers crossed!  Oh and one more thing, My Younger Brother has MS.

Thanks for the vent,
Aura

[aura3]

Thanks for the comments! :)

I did have the western blot lest come out neg.  When I first came down with my symptoms Lyme disease one of the first things they looked at.  I don't know how many times I was asked, "Have you been in any wooded areas?"  At which I hadn't gone any where and I live in the desert.

My Neuro should have my Spinal tap results by today.  I am hoping I will hear from him, but I probably won't.  

I am sure this isn't the last of my test that I will have done. As I will keep fighting to find out what this is that is making my life to difficult.

Thanks for the input,
Aura

[SOONERMOM]

Sorry to hear about all that you are going through!  I had some similar symptoms as you and it turned out to be Lyme disease.  It is probably not likely for you since you are in AZ and you have a brother with MS, but make sure that you get a western blot (blood test) to rule it out.  My screening test was negative but the WB was positive.  I ended up seeing 4 neurologists and not one of them got it right.

I hope you get some answers.  I know how frustrating all this is!!

Stacey

[sllowe]

Hey again,

I'm thrilled you have all the test results.  You know, that is why these Docs get paid the big bucks - to figure all this out!  Although some have experienced some real slackers to say the least.

I hope your Neuro is going to be able to tell you what's going on by your next visit.  But, don't be shocked or disappointed if some of the tests he added on lead to more tests, this happens ALOT.  Not saying that will happen to you, but this does take time.

Just hold him and the office staff to shorter intervals inbetween appointments.  This I absolutely would do.

You can go on, you've made it this far.  I've felt this way too, it's horrible.  Just do what you can do each day.  THIS is all you can do for now.  

I'm sure we have lots of folks w/symptoms like yours, sure they will chime in.  But, again, there are so many disease and syndromes that have overlapping symptoms - so very difficult and frustrating!

ttys,
SL

[aura3]

I am bumping this up and adding a question.

Does any one have symptoms that are close if not the same as mine?

MS is the only thing makes sense to me.  It is also the only thing that I know much about.  My Brother was dx in 2002 and I had done a lot of research for him.  Never thought I would need any of it for my self!

Don't get me wrong, I have check just about everything out there that I can find and tryed to match up my symptoms.

I just don't know if I am prepared to go on for months and or years not knowing.  My Neuro says by my next visit he will tell me what is wrong.  I just hope that is true!

Thanks to all that have listened!
Aura

[aura3]

Thanks, for the response,

I have been lucky enough to keep copies of every test that has been done.  The New Neuro was even able to point out that some of the past test were not completed enough to rule out a few things.  Right now he is looking at it being MS or/in combination with cerebral vasculitis.  So we will wait and see.

Thank you so much for the encouragement!

Aura

[sllowe]

WOW Aura I'm so proud of you to have kept going to the ER! Not many would of kept pursuing! By doing this, you have many, many tests and studies that have put you far out ahead of the race!

Hope they get you in soon.  Try to get copies of all of the bloodwork and work ups that were completed at the ER's.  That way, when you go see the Neuro, you will be armed with lots of results for them to review.  A thorough check up will be in order from here.  Check out our health pages to see what they may be looking for.

Welcome to our group! Hang tough, you are doing well.  It's going to be hard to get through the symptoms, but just do your best.

Thanks for joining us,
-SL

[aura3]

Thank you for the Neurontin info.  With the Lyrica some days are good and some are just the way they were before I started taking it.  If I continue to have up and down days I very well will ask my Neuro about Neurontin. Thank you for your concern.

Thanks,
Aura

[Tahiri_Veila]

I am sorry about everything.  I hate the fact that you cannot seem to get into a neurologist when you need to.  I can never get into a good one.  I have tried Lyrica.  Be careful.  It is a rather dangerous drug.  I am on Neurontin.  If Lyrica does not work you could try it.  I am sorry about everything hope it gets better.
Tahiri