Got my MRI results from yesterday....

[6-paq]

.... and I guess I'm still in LIMBO!!!!!  :-(

My first MRI was 13.5 months ago.  Of the three scenarios that I was thinking of, I guess it was the "better" of the three.

CEREBRUM: Again seen is the 1.5 x 0.9 cm focus of high T2 sign intensity (yeah, I know that's a big spot) within the posterior right periventricular white matter.  No enhancement or significant interval change.

Again seen are the two punctate foci in the left corona radiata which are stable.

CONCLUSION:  Compared to the previous exam there is no significant interval change with again nonspecific white matter lesions.  Cannot rule out Multiple Sclerosis.

Soooo.....   No change in the 3 old lesions, no new lesions and no enhancment.  But, we can't rule out MS.

I didn't hear from my neuro yet (I went by my facility and picked up the report) and wonder if I will before my next appt?   My next appt is June.  Hmmm.....

I guess I'm ok with that.  I am feeling well (although I know that I could be accumulating lesions) and I feel that my neuro is following things.  Although he's not a specialist, he has a large number of MS patients and is a Tysabri doc.  I'm getting treatment for other identified issues, so I am getting some relief.

With all other testing being normal and not showing any abnormalities on exam, I can understand why he can't Dx me at this time.

However, I still have that bag of uncertainty that I'm dragging around....  :-(

Take care everyone, Pat :)

[young at heart]

AT ONE POINT I DID TAKE A BREAK FROM DRS.I JUST NEEDED A REST,SO I CAN RELATE AND UNDERSTAND.

THE NEXT NEURO I WENT TO,DX'D ME THAT APPOINTMENT.MY VEP IN 2006 WAS NORMAL,2007 ABNORMAL 2007 IN BOTH EYES.THINGS CAN CHANGE THAT QUICK.

WE GET EXHAUSTED AND DISGUSTED WITH DRS. AT ONE POINT.

T-LYNN

[6-paq]

Thanks so much for the support everyone!!  You all are such a great group!!  ((hugs))

To answer some questions:

My neuro had said that the lesions could be old scarring.  From what, I have no clue.  My mom did recently tell me that I had a traumatic birth (she wasn't attended to properly during labor and went into shock. I was delivered by forceps), but I really don't think that could be a cause for the lesions.

I won't let my neuro wait until June.  He can't get out of that so easy.  I do think he'll call before then.  I'll give him a week and then I'll call him if he doesn't call me first.  

My MRI wasn't done on a T3.  I also haven't sought out an MS specialist at this point.  I've been very wishy-washy on that.  While I do want to have a Dx, I'm afraid of actually getting one.  I know it's better to treat early.   Although,  I think Heather mentioned in another thread that I probably wouldn't get an MS Dx if I'm not showing any abnormalities on a neuro exam and I haven't as of yet.  

I have been through all of the testing (EVPs, LP, NCV/EMG, Visual Field Tests, numerous bloodwork), which of course, was "normal", and I do see my neuro frequently.  Is there further testing that an MS specialist would do that I haven't had already?  

My symptoms (and Dx's so far are):

Tingling on bottom of both feet (3 middle toes), tingling on inner thigh, tingling down side of leg, sore left hip, mild sensation of weakness in both legs ~ moderate lumbar stenosis, hip arthritis Dx (much improved with with PT)

Tingling on outer 2 fingers bilateral ~ ulnar nerve entrapment

Tingling on thumb,middle,forefingers bilateral~ Disc spur in neck (C5-C6), Carpal Tunnel

Brief periods of dizziness, fullness in ears, constant headache in forehead, tinnitus (both pulsatile and ringing) ~ Pansinusitis (surgery last year) and recent TMJ Dx (to start PT)

VNG showed dizziness was peripheral.  Dizziness much improved with Vestibular PT and Trifocal glasses.

I do have a couple of Sx that haven't been "explained" ~ a fine bilateral hand tremor that I've had over a year and a recent one week period of unilateral galactorrhea.  

I can see why, in some cases, it is difficult to Dx.  Other people's Sx and testing scream "MS", but the person can't get the Dx. My lesions found with the brain MRI say "MS", but the other testing doesn't.  

So, I just don't know what to think anymore.  I'm so burned out right now with docs and appointments.  Perhaps maybe I should just lay low for a bit??   I think I'll just forget about me right now and concentrate on being a source of support for those of you here.  That way I can give back what you all have given to me.  ((hugs))

So sorry some of you are going through the same limbo experience right now too and have gone through it for much longer.  I so hope that you can get some answers soon!

Take care!  Pat :)

[young at heart]

PAT,

HAVE YOU GOTTEN A SECOND OPINION,MAYBE FROM A MS SPECIALIST?

HANG IN THERE.WAS YOUR MRI DONE ON A T3 MRI MACHINE? THAT CAN MAKE A WORLD OF DIFFERENCE.

WE ARE HERE FOR YOU

T-LYNN

[santana8]

I am in the same boat too, and have been for two years. My dx for now is ADEM, but like you my neuro says it could still end up being MS. I also had a negative LP and the repeat MRI's done every six months for the last two years have showed no change in the lesions. I have 6 to 10 of them. Also no enhancement or no new lesions. This is consistant with ADEM, but still they watch me to see. It is the worst but I don't know what else to do except keep insisting that they keep ruling out all the mimics. I don't know how long they will monitor me, maybe forever it seems like at this point. Just wanted you to know I understand and you are not alone in this!

Santana8

[Want to feel well!!!]

All I can say is hang in there sweeite.  Hopefully you will be able to talk to neuro before JUNE.  Would be be out of line to call the office and ask to talk with him?

Your statement "I still have that bag of uncertainty that I'm dragging around' is so aprops and descriptive.

(((HUGS))))
Wanna

[Arijana]

Does your Neuro suggest what else these lesions could be attributed to?  I think you mentioned earlier your LP was negative??

What are your symptoms?

Thanks
Deb

[Wobbly]

Yeh, it's the pits when that happens and you still have too wait.I know that feeling..

it's a good thing you are getting treatment for other issues and feel not too bad...

take care

andie