okie doke... : /

[Erin65]

Hi, everyone.  I've been a long (long) time lurker and have really appreciated (highlighte/underscore) being able to read everyone's input toward others' situations.  It makes me feel better when I'm not feeling so great!  

So now here's my situation:  after an initial loss of an ankle reflex (6 weeks) followed by many years of leg weakness, vertigo, one bout of optic neuritis, and various other things, (though not so many years that I was followed by drs., the entire time), my current neuro and I recently decided that the last 2 months I've spent on crutches haven't been my best, and so after an MRI came back with just one lesion, he ordered a second LP (the first was done in 1989, at the start of all of this, and was inconclusive).  

Monday he called me at work and told me I have 5 csf bands, saying "looks like it's MS"; ok.  But since then...he's rethought it all...as have I, and today we decided to have me undergo cervical/thoracic mri(s) -- T3 ---which showed: nothing. (well, I do have a spine).  I was (of course) hoping (expecting?) a firm diagnosis.  Hmmm.  Should know that by now.

So....I'm back to: "possible/probable"...with a referral to a local MS clinic, etc.  And, except for this forum, which I peruse often but rarely post to (because, after all, I wasn't "diagnosed" until Monday...but wait...I'm not diagnosed now. Dang..you get the picture!!), I haven't any real support group, (or need of one? arrrghhh!!).

I am really (almost) at my wits' ends with this.  : (

Anyway, thanks for letting me vent. : )  Hope everyone enjoys a nice long weekend!!

[rendean]

Hi Erin,

Welcome to the forum, officially!  We don't mind lurkers at all, in fact some of regulars now were once lurkers.

Sorry to hear about the indecision you are facing, especially since this has been going on almost 21 years. Perhaps the MS clinic will see enough to allow them to give you a definitive diagnosis.

You are always welcome to lurk, vent, share or comment here.

Again, welcome and we hope to hear more from you especially after the MS clinic.

Best wishes,
Ren

[Sparkysarah]

Hiya, we have not met before but it is good to hear from you on the forum and as you say a great way to seek support.I think there is nothing worse than uncertainty and I really feel for you after all this time that you still seem to be just hanging in there.

It sounds as if the neuro is sticking with the "probable"  dx as you are going to the MS clinic. No-one wants a dx of MS but on the other hand if there is a dx to be found, it is easier to deal with what we know than what we don't know. So all you can do is actually listen to your body and be guided by that. Best of luck and hope your visit goes OK.

Love Sarah x

[lovemy6monkeys]

Welcome to the forum!

I was just diagnosed on Wednesday, using only the vertigo I had last month (which cleared up with a course of IV steroids/prednisone taper) andI went in this past Wednesday with burning/stinging in my feet that has moved up my leg to my knee and also started on my right hand/arm to my elbow. He asked about my bathroom habits, and I admitted some constipation issues for years, but never bad enough to use meds. After a bit of a physical exam, he said I'm showing classic MS, and that spinal lesions are extremely difficult to see on MRI.

I hope the MS Clinic will be willing to diagnose without relying completely on MRI images. I'm a classic example that they do not pick up everything.

Good luck and welcome to the forum! It has been suck a comfort for me here. I hope you stick around too!
~Jess

[lovemy6monkeys]

Um, that should read "such" a comfort for me, LOL. I guess my fingers are still asleep even if my brain has been awake for the last hour :-)
~Jess

[Lulu54]

Erin, welcome to the forum here, officially.  If you've been lurking for a while then you know this is a pretty smart and compassionate group of people.  

Perhaps now is the time to arm yourself with some knowledge about CIS - clinically isolated syndrome - and be prepared to argue for treatment based on the clinical evidence you have already shown.  


Of course, if you get a neuro with some extra smarts, you may very well get that MS dx - about 5% or so of people with MS don't show lesions on their MRI's.  there are always exceptions for this disease, and that is one of them!

take care and I'll watch for you around here!
Lulu

[Mike_Shuswap]

Erin, but you DO have a real support group when you need one..right here!

We've got un-dx'd to dx'd and everything in between in here.

We've got looky-loo's, lurker's, limbo-lander's, and loony-toons....and they are all warmly welcome in here.

That's what makes this forrum work.

So we're very happy to have you here as part of the most functional disfuntional diverse group on the net.

Vent away my friend, and stick around, lurk or post, whatever works for you.

Mike

[Erin65]

Hi, Everyone,

A very big thank you for your responses. I realize the dx is mainly for my own peace of mind, because obviously support exists everywhere no matter the outcome (take a look around here, for instance!).  I'm sorry to not address each of you in kind, but I'm having trouble with my right hand (nerve issue from using forearm crutches I think). But it means a lot to me to read all of your advice, and I may even take some of it ;).

As for next steps, I start an infusion of Solumedrol on Tuesday; hopefully it will fight off the weakness/numbness in my legs.  

I really appreciate your taking the time to sit down and address a stranger's concerns; it's hard enough to have to go through these things solo.  For all of you to reach out and say "hey..been there!" is really pulling double duty! : )

Oh - one last thing... although I chose "Erin" as part of my screen name (only because I have a thing for Ireland) my name is Deborah. Just don't want to confuse people down the road...! Maybe I should switch the name : /

take care,  
Deborah : )