Now what?
 

Hi, I'm a newby here. I've been experiencing a variety of symptoms for a few months and saw a neuro a month ago. He instantly felt it was MS and ordered an MRI. It was clear, except for one small brain stem lesion. Did the VEP, it was within normal limits.

Had my follow up exam yesterday and again, per the in-office exam and my sx, the doc is still fairly certain I have MS. But since all of the tests have been negative, there's nothing he can do to treat it. I'm to have a LP done, nerve conduction studies of my hands and start vestibular rehab next week to give some relief from the vertigo, and just wait. We'll do another MRI in 3 months, then another in 6 unless all of my symptoms vanish.

I don't really know what to make of this. I'm a mom of 3 little kids, I'm looking at going back to teaching and to finish my EdD and I can't imagine how I'm going to get it all together to do all of that in the fall. Right now if we get dressed, eat and have clean laundry it's exhausting and all I can do. I have all but stopped driving, I can hardly use my right hand and more.

Is there anything more I can do to feel better right now? I'm not OK with the 'sit and wait' approach - but there's nothing else to do besides the rehab and to try and live healthy, right?

hi kristin,

i'm sorry for what you're going thru. it sounds like you have a full plate.
i commend you for your goals. they sound terrific.

it sounds like your dr is doing all the logical things. he can't make a dx unless more of the tests are +. the nerve conduction studies should yield some good info. it can take some time for MS to really declare itself.

in the meantime i'd ask if any of your sx's could be tx'd with some meds.
like provigil for fatigue.

BTW, welcome to NT. we're here for you during the process your'e going thru.
try to take one thing at a time. if your body says stop try not to push past your limits without a rest. with 3 kids it will be hard but it's a strategy.

please let us know how you are.

Hello Kristin and first off ~welcome to NeuroTalk. I too, am sorry to hear about your problems and the frustration of not knowing what's truly going on. Sometimes Dr's have to go through the elimination process, so they can figure out just what it is you have. Like Nurse Nancy (Judy) said, there is a criteria that Dr's must follow for an MS dx.

Hope you get to feeling better soon; being a Mom is such a rewarding job, but one that doesn't allow time for exhaustion. Take care and please make yourself at home here. Glad you found us, as you'll find a warm, helpful community here.
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Thank you both for your kind words.
Went yesterday for nerve EMG and another test involving a long needle that I'd rather forget - both were normal. The sweet doctor is still stumped and the LP is scheduled for two weeks from now, so he drew more blood for more labs in the hope that something will pop up. The PT doesn't think anything I can do in physical therapy will really help the vertigo either. I'm supposed to give it a shot for a few weeks to see if it lessens the vertigo a little. I suppose it's all well enough, the numbness/tingling are less and most days the vertigo is far less than it was at its worst.

Anyway, thank you for your support. :)

Hugs to you and yours!

I am so sorry for all you are going through. Its hard not to have a NAME for all you suffer.. again.. I know!!

But what I did..after many tests and years of monitoring is to see a specialized nutritionist as I was so weak I could not hold up my head at work..hardly work..hardly walk.

It seems the finally ruled out MS..but I do have a neuro problem.. and now with an astute PCP was referred to an autonomic specialist.

BUT in the meantime this nutritionist.. did an amazing eval..showed not only where I was deficient..but where I was TOXIC..did a safe detox..built up my sytems and many many systems..including balance problems..fatigue and dizziness went away.

So I am glad now that I do not have the DX I fought so hard to have as it was probably wrong.

Hang in there.. if you believe.. try looking up ART or NRT=Nutritional Response Testing and ART is Autonomic response testing. Its amazing. Some chiropractors have this training..and like me.. this nutritionist. There are few but they are out there.

No matter what.. you'll feel better and maybe some of your symptoms WILL dissapate. I was desperate..had to work.. and wow glad I did.

Good luck

Jan

Welcome Kristen. I also have only one lesion, and it's in the brainstem. But my spinal tap was positive and I had enough symptoms that my neuro was confident enough to diagnose me as probable MS. I was started on Avonex right away and I am treated just like I have MS. Only difference is that I only have one lesion. and if I am treated with the same respect as one with a full diagnosis I hope I can always keep it probable because it means just the one lesion.

Kristin!

Kristinkristinkristin!

One big, warm, tight, hug, handshake and howdy, moose size welcome to the site. This place is amazing!

I got the MS 5 years ago and I've met people on the web who went a year or more before they got a concrete diagnosis. I was one of the lucky ones. It only took 3 months of tests and whatnot after that first episode.

After it yanked the wind from my sails, MS taught me many things including patience.

Just hang in there and keep posting here because;

You are not alone.:D
You are one of us.:hug:
And we are here to help.:grouphug:

I am the MonSter MS fears.