QUIX or anyone

[Melissa072]

Hi all,

I posted the other day, but for some reason can't see my post on here at all?????????????????????/

Anyway the same questions again..LOLS

June 2007 I had

6 weeks bilateral 24/7 dull, aching, burning face pain
about 6 months 24/7 tingling in hands and feet
mild dizziness
couple weeks bad twitching
numbish feel under both feet
burning patches all over

July I had mri of brain and spine without contrast on a 1.5 telsa, then a repeat in December 2007.  (all clear)
Then January 2008 had mri with contrast but only a few pictures as the last was only done a month before hand (clear)
January 2008 Lumbar Punctar was negative


My first neuro dismissed ms due to normal brain mri

2nd neuro says ms less than 3% and ran several other blood tests etc

Now second neuro says ms a possibility and even if I have clear mri on 3 telsa and evoked (not sure of the name) if they both clear ms still can't be ruled out.

I'm to go for repeat mri, will book one after kids go back to school, if its clear, can I rule ms out then????????????

I have read a few of Dr Kantors posts and it seems he believes that with repeated clear mri's on a 3 telsa and neg lumbar ms is almost unheard of????????????????????

How many mri's do we have to get, when do we stop, I don't want to spend the rest of my life searching........

It's too worrisome and depressing,  any thoughts much appreciated.

[doni54]

Hi Melissa,

I found your other post, here's what I answered:

As for your no dx situation.  I'm there with you, but I can't offer any great answers other than to hang in there and get those mri's done on that 3T, with and without contrast.

I know how frustrating it gets when you know something is wrong and you can't get the answers.  I've been years dealing with symptoms and here I still sit in limboland.  And to be sure, all of us limbolanders have to be tough and keep pursuing our answers.

Don't ever hesitate to talk to us about how you are feeling.  Everyone here, whether dx or undx, get frustrated at times.  Having each other to vent to, has kept me sane (well, saner than I would have been without all of you.....hahaha).

Take care and keep talking to us Melissa, it really does help.  

Hugs,
doni

[Melissa072]

I forgot, part of me being so confused about this whole subject is the face my first neuro told me I don't have ms due to brain mri............................

Second and current neuro told me you can never rule ms out.

He told me to keep getting 6 monthly mri's and if anything appeared he wants me to get the evoked .............(don't know name)
He told me if I had normal mri and normal evoked I still can't rule ms out, he told me it can never be ruled out.

I asked him in his 20 years of working with ms patients how may people has he dealt with that had ms symptons and clear tests who later went on to develop ms and he told me 2.

One lady had ms symptons for 2 years before tests came positive and the other lady had a 20 year wait until something showed.

I think every neuro should do an update of their date and people who come to them with symptons and have clear tests then who go on to develop ms.

It would make our lives a lot easier (us who are in limbo), the stress of this has put a strain on my whole life, my marriage and even relationship with family.

I'm moody, sad, happy, depressed, have ms on my mind all the time, some days I don't know if I should laugh or cry.........................

[Melissa072]

What can I say, thank you, thank you , thank you........................

[Quixotic1]

I want to discuss this question.  I have reasked a similar question to Dr. Kantor, though I am losing hope that he will take my questions seriously.

I'll be on tomorrow.

You can go to your profile and see a listing of all the posts you've made on MedHelp and see if your post was somewhere else.

You bring up a very important thing to discuss.

Quix

[Lulu54]

Hi Melissa,
perhaps your original post is on the MS Expert Forum?

If something is very wrong with you, why would you want to stop looking for answers?  If you can live with your  symptoms then by all means you may want to consider dropping the search.  But I know I would really want to know .......  I hope that makes sense.  

Sorry its late, and I'm tired. I'll try to answer more tomorrow or someone elsewill come along and help.
Lulu

[Melissa072]

Sorry I forgot one thing.

I chat to many on here with similar symptons to me, and they are all ms symptons.

Many others have also had normal mri's or neg L.P.'s so shouldn't it be time for neuros to all redo the % of clear tests and people that go on to have ms?????????

Or is there something else out there similar to ms and just doesn't have a name yet?

There just seems to be a lot of us with ms symptons and clear tests????????????

Wouldn't the 5% with clear tests and ms be a bit old and wrong, wouldn't or shouldn't the percent be a lot higher????????????

Just a thought.

Even Dr Kantor wrote negative L.P. and clear mri is almost unheard of with ms.