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Posted 5/19/2009 5:16 PM (GMT 0)
Hello all! I'm typically on the Crohn's forums because i've had that for 8 years now. Currently in remission :)
I started having focusing trouble a few months ago and my eyesight has just been deteriating quickly. Went to the eye doc and found nothing wrong, just needed new lenses. Well, I've been having these 'episodes' i wanted to get someone's opinion on. Comes on quickly and my eyes go all bonkers, can't focus anything, everything moves like i'm on a boat. My face and arms get all tingley and my arms get really heavy. Seems to last a few hours then go away. After that my eyesight is worse for a few days. sometimes so bad that i can't focus enough to read my email.

I'm 32 years old. I went to my GP and he gave me stuff for high blood pressure and vertigo. (i've been sooo dizzy i can hardly walk at times). BP wasn't crazy high but i was elevated enough to cause headaches at least (150/110).
So 4 days have gone by, i've had a CT that showed nothing, normal blood work and my blood pressure is back to normal. None of the symptoms have gone away, they are just getting worse and i keep adding more things to the list. I have compiled a list below. I'm going to see a Neurologist on Friday and hopefully get an MRI before the appointment so we can not prolong this anymore.
Here are some of my most annoying symptoms.

Eyes refocusing all the time/blurry vision
constant traveling headaches that do not get better with meds.
vision problem - everything appears like it's swaying back and forth like i'm on a boat.
can't hardly concentrate sometimes, trouble forming sentences and remembering things.
fatigue
dizziness, so bad sometimes i can't even open my eyes or walk.
light headed, when the dizziness comes on strong, i feel like i'm going to pass out.
i've recently started feeling like i'm sitting in a giant pool of molassus, it's so hard to make my limbs move.
weird jerking all over my body during the night, can't sleep because of it.

So, is this a common list for people that get dx'ed with MS? What questions should I ask the Neuro when i see him? any tests i should get? anyone had that EPV test?

Thanks everyone for listening, i appreciate it!

-Jeny
Posted 5/19/2009 5:23 PM (GMT 0)
i just wanted to add, that I understand no one can give me a DX on here, i just would like to know opinions about it. I like to prepare myself for the worst usually. :) I was all prepared for Brain Tumor, but they ruled it out...so now we are looking at Neurological problems.
Posted 5/19/2009 5:56 PM (GMT 0)
Hi Jeny
My eye sight gets worse throughout the day, everything starts to get blurry. I suffer terribly from migraines. I also have vertigo and dizziness problems, like you said sometimes it feels like the room is rocking like i'm on a boat and that usually brings on a headache. I also have fatigue and at times i'm so tired my limbs feel too heavy to lift and when i lie in a bed at night my calf muscles twitch sometimes so badly i can't get comfortable enough to sleep.
I think most people with MS have some if not all the symptoms you've said you have. I also have trouble with my memory and articulating words.
I hope this helps you. I think the MRI is going to be the best test you can have to see if you have MS.
I have read in the past though that MS is so hard to diagnose because it mimics so many other illnesses even anxiety.
Good luck
Posted 5/20/2009 12:48 AM (GMT 0)
Jeny!!  150/110 is crazy high!!!!  Man, make sure that is all taken care of. 

Your list of symptoms does match MS type symptoms.  I am glad you are having an MRI.  Do remember that MS shares symptoms with many other diseases.  Also, you have crohn's which is also auto-immune.  The bummer is that if you have one auto-immune disease, you are more likely to be diagnosed with another.  There seems to be some of us that are susceptable to those darn auto-immune diseases. 

I am not familiar with EPV.  Is there another name for that test?  I had a VEP, which is a visual evoked potentials test.  That is an excellent test for determining nerve function in the central nervous system.  It tests the speed by which visual stimulation travels to the brain.  If this is the test you are taking, it is totally painless.  I flunked mine horribly and that along with lesions on the MRI and a positive spinal tap pretty much got me the diagnosis of MS.

Good luck.  Welcome to the MS board.  I hope you feel free to ask questions and share as much as you would like. 

Posted 5/20/2009 12:03 PM (GMT 0)
lol...yes VEP is what i meant...those darn Ghost Hunters shows have me confused with the EVP (Electronic Voice Phenomon) LOL
well..i guess my point on the BP being 150/110 was that when i was 9 mons preggers with my first child, they induced me because my BP was 190/130, talk about high right!? At the time tho, I didn't feel any of these symtoms, just light headed and a nasty headache. My vision and mobility was fine..for a hugely pregnant woman.
I'm doing really bad today....hard to walk and my arms and hands are so clumsy, it's been a huge struggle to type today. But, i'm going to try to be at work today...need money!

Is it inevitable that people with MS stop working and go on disability?

Ugg, hoping to avoid the spinal tap!! Doesn't that hurt? Is it like getting an epidural?

This all helps me prepare, I really appreciate the comments!

Thanks a lot!
-Jeny
Posted 5/20/2009 1:46 PM (GMT 0)
Hey Jeny,

I did the same thing with my first child!!  I was the same way 190ish/130-140.  It was crazy.  They took my first born three weeks early. 

I am not diagnosing you of course, but you really do have my same symptoms.  I don't have the arm thing but my presenting symptom was vertigo and balance problems.  I have had the vertigo ever since although to varying degrees.  As long as I am not nauseous I can function with it.  You get your "sea legs" after a while.  Weird. 

No, not everyone is doomed to go on disability with MS.  I am not really sure but I have heard that the numbers are right around 50 percent.  I am still working full time.  We have other member that also work full time. 

The lumbar puncture is not a lot of fun but if the doctor recommends it, I would go ahead with that.  It is a really good indicator.  As that they use real time flouroscopy so that they can see exactly what they are doing.  Just talk them through it.  Don't try to tough it out.  Ask about the blood patch too which can help with pain management after.  I did not have any problems after it was over, the procedure itself was a bit painful but I did get through it.  My doc was slow and patient and listened to me. 

Jeny, feel free to ask as many questions as you would like.  I understand that need to know what is possibly up around the bend.  You must be a bit of a control freak like me.  I wanted to know everything!!!

Posted 5/20/2009 5:27 PM (GMT 0)
lol Gretchen, yes i'm a bit of a control freak...sometimes i go into the doctor and just tell them what tests i want run..hehe. if i test positive for MS or Epilepsy or whatever, i will research the hell out of it and go into the doc office with a list of medications i want to try...hehe.
sometimes can get hard to find a doc that is ok with that :) but i've been lucky so far.

Today my 'dizzy' spells have made me feel like i'm going to loose conscience. My head goes back and to one side and my eyes roll but then *snap* i'm fine. very frustrating.
Posted 5/21/2009 5:13 PM (GMT 0)
ok, well MRI came back normal. Now what?
Posted 5/21/2009 8:26 PM (GMT 0)
Well the good news is you probably don't have MS.  That bad news is you don't have answers to what is causing all this.  Keep asking what they think it is, what tests should be run next, what treatments might ease symptoms and go from there.  Good luck!  I hope you feel better soon.  You are always welcome here.
Posted 8/8/2009 6:35 PM (GMT 0)
I totally understand where you are.  You sound like me 4 yrs ago.  Neuro eye Dr said no MS, MRI said no MS  LP was only a "little" +.  Four years later the MRI is +, have been on prednisone for 6 weeks and have not been able to come off due to the pain.  Eye sight seems to be getting worse everyday.  I am finally being sent to UAB in September.  My Neuro will still not start any MS medications and I do not understand why.  I am a RN like you and did not push it because the MD's did make me feel like I was trying to daignosis myself and that I was just anither depressed women.   So my advice is to stick to your guns, us nurses know our bodies better than anyone else.  I now have to ask myself the question if I had pushed how much of the symptoms I am feeling now my have been at least postponed if I had stood up for myself.  Lots of luck to you.
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