A wee update

[LisaJF]

Not much going on with me and pretty much like Guitargrl, I like to go out and do as much as I can, when I can and if my fatigue allows me to do so.

Some of you probably have no idea who the heck I am but eventually I'll seep into your lives LOL.  I do not have a purple flower though :D

Today I have a MRI of brain scheduled by my primary MD.  I went to her last week due to confusion issues.  I have a hard time following GPS or mapquest printouts with 6 liners to get to destination or recognizing anatomical landmarks of places I have driven to for years or over a decade.  Sometimes I can get there to where I'm going, but on the way home, I'm like totally lost wondering where do I go? LOL.  

The MD did not order a cspine or tspine because I lack a diagnosis of MS, so therefore she writes on the RX:  MRI of head:  white matter lesions, elevated anticardiolipin and confusion.

At first I thought this was an age related process since I'm 49 years of age.  There's always a possibility right?  Well, that's going on today so think of me at 12 noon EST. LOL.


Another thing I'm battling with is the shortness of breath issues.  It comes and goes but along with the fatigue, sometimes makes my day like p00p.  Muscle weakness in legs sometimes inhibits me to do much around the house or go out photographing.

A good thing though, pain does not seem to be an issue anymore (let's not jinx that one).  

I still get occasional blurred vision with my eyeglasses on (corrective ones) with one eye.

I'm trying to think of anything else but pretty much that's it other than balance issues at times.

Just thought I'd put in a whine or two or three. LOL

Lisa

[Cann1980]

Ah ha... So my star shows my addiction... :)

[LisaJF]

Thank you for your words of comfort and support.

Purple flowers next to a person's name means they are moderators. I am not one was the point I was trying to make :)

The stars indicate the amount of posts you have I believe.  I can be wrong.  If you go away from forum awhile, they tend to shrink. LOL.

Lisa

[Cann1980]

Hi lisa... I am new here.. But I recognize your name :)
I will be thinking of you on Monday. I hope you get all your answers... Seems like you have had a long journey.

Ps... What do the purple flowers mean? I have a star and don't even know how I got that. Lol

[LisaJF]

To Ren, JB, Dagun, thank you for the time and kind words.  Your emotional support is greatly appreciated.

I'm hanging.


I got the report today and it mentions that I have a new lesion of the inferior aspect of the corpus callosum.  Unfortunately, the radiologists did not compare the T2 Sagittal Flair of 6/21/13 (where at least definitively 6 more new lesions appeared on different slices and one bright UBO disappeared) to the 7/29/11 T2 Sagittal Flair (its the only Sag Flair I have out of all the MRIs I've had since 2007 -- can you get over that?)

I tried to call the radiologist today who read the report and was going to ask him to compare those two sequences and ask for him to write an addendum, but he wasnt in today.  

Guess I'll have to wait until Monday.  

Anyways, I thank those who came to my aid in the time of need.

Lisa

[rendean]

To LisaJF,

SO sorry to hear about your MRI results! I now you have been battling with wishy-washy(I'm trying to be nice) docs and perhaps starting a DMD 2 years ago when symptoms, though minor, first appeared along with brain lesions would put you in a better state of health now.

I had to wait 4 years and wonder if I would have as many symptoms had the first 4 neuros hadn't been squared headed enough to believe that MS only has oval lesions not he rounded ones I have.

One never knows and it is something that is hard to let go of, even though my neuro I have now and adore, says there is no way to say what my course would have been like. Some people respond to certain DMDs and others to different ones. I seem to be doing ok on Tysabri after moving on from Copaxone. I DO understand your "what-ifs"!!!

JB: Teh same for you. I know you wonder everyday , "what-if" and for the life of me I don't understand why they cannot start you on Copaxone since it is now indicated for Clinically Isolated Sydrome (CIS) events.

Both of you hang in there!!!

Hugs,
Ren

[johnniebear]

I'm in the same boat no  DX - I also feel if I was DMD Early on
My lesion maybe wouldn't have increased. Even had one lesion that
enhanced

Over the years I've gone from 2 brain lesion to
6-  no spinal cord lesions , I now have 2 spinal cord lesions.

And my Ms Dr  says its still RIS -  see my reports I've posted

I've thought the best research has shown early is
treatment opportunity to slow the monster down

Wish you the best with appointment

Take care
JB

[Dagun]

I am sorry about this increase on your MRI Lisa. I really hope that you will get your diagnoses now so you can start treatment and I sure hope he can count!!

My best wishes,
Dagun  

[LisaJF]

Thanks Kyle and immiseo!

Got back from my MRI...got the cd afterward, popped it into my cdrom to take a peek and there's no doubt there's an increase in lesion load in cc and some touching upper cortex areas, like they grew.  

I'm going to call the Neuroradiologist on Mon and have him compare this one to the July 2011 and he'll see for himself.  Can't mistake white circular or oblong lesions once the Neuro's point them out to you and I know how to count.  

I'm pretty darn upset right now.  IF I was treated, perhaps this wouldnt happen.  Perhaps I would have been the same.  

[immisceo]

Thanks for the update. Hope the appointments went smoothly. I'm so sorry to hear about the confusion issues. But delighted about the pain going away!   (and thanks for the giggle ref: p00p)

[kwarendorf]

I meant at 49...

[kwarendorf]

Thank you for whining Lisa. At 53, I do not consider anything that happens at 40 to be age related, unless it's lack of age that is the culprit :-)

Kyle