Back and still confused in limbo

[tinkernurse]

Well I have been gone, mostly, since the old boards in 2006 or something....I used to post under Califlagirl (I think)....I tried to post last night but must have done something wrong sooo I'm going to try again.

Hi everyone! I'm "Tinker"...a nurse and limbolander who just got the results of my first positive MRI of my brain (I spent a bunch of the past years in only small flares and without insurance..soooo now I'm trying to get things done.

Since my story is too long to digest all at once, I will begin with the most recent (the MRI report that has me baffled) and some of my most current "issues"

First, my previous MRI showed only a sinus infection..it was without contrast (but the contrast didn't make a difference on this recent one anyway)...the old was on a 1 and 2T...the recent on a 2T and 3T machine.

This one showed 3 lesions....1 in the anterior left frontal lobe...another in the left subcortical white matter of the frontal lobe and another at the right junction of the external capsule and claustrum.....It also mentioned scattered hyperintensive foci in the periventricular and subcortical white matter of both cerebral hemispheres.

The impression was "Atleast 3 punctate, nonspecific gliotic foci in the subcortical white matter...'Could be'...gliotic changes related to perivascular spaces....also consider early microangiopathic ischemic sequelae (I've never had hypertension, hypercholesterolemia or diabetes)...sequeale of migraine headaches, (these are generally temporary and my last MRI didnt show any of it and I haven't had a migraine since early 2006) and sequelae of demylenation in the appropriate clinical setting.

I'm sort of confused...but I know my history...my presentation and my pattern and what seems to influence my condition....I'm still thinking its the MonSter...because at least that I get (as much as you can get something so bizarre)

Anyway..I've ruled out all of the typical MS Mimics...I've had my blood, lungs, sleep, ENT, heart, breasts, cervix et al all checked in the past year (some many many times)....now I finally have something to dig my teeth into and I'm still confused...maybe I'm scared (which is soo not how I thought I'd react at this point when I saw 3 new white matter lesions)

So that is the start of my story....any thoughts would be helpful..please forgive me if I seem disconnected at this point....I'm not myself cognitively (at least NOW I know why...frontal lobe and all)...I can generally write flowing and with a personality but its sort of all I can do to semi organize any of it right now.


Nice to meet you all...some of you again....HAPPY NEW YEAR!!

Hugs~ Tinker (trying to keep a smile until my appointment on 1-21-2013

[22cyclist]

Hi Tinker: Hopefully you will have some answers soon. Have you ever had a spinal tap? They might do one since your lesions are punctate. However, you do have some white matter changes in some of the right places for MS, so maybe not.

Anyway, happy to meet another fellow nurse, sorry for the reason why though. Glad you are here.

My advice is to try not to worry too much until you see your neuro. Its terrible to wait, but hang around here for a while and pass the time.

Take care
Lisa

[tinkernurse]

Nice to meet you Lisa...and yes..the reason is not the greatest...but I know this place gave me much solace years ago when all of this first began.

I haven't had a LP (accept in childhood)...hoping that it won't be needed as I do have documented at least 2 other flares (and then I quit going to neuro since my funds were low and I had no insurance)

Just quickly....my symptom check list has been...=drumroll=

fatigue (waaay worse over the past couple of months-for 2.5 months straight in the midst of summer)

Lately the majority of the time I cannot move the toes on my left foot (when this happened during the first flare it lasted 2 days and the last two toes remained stuck for years)

Pins and needles and tingling (oh my)

Of course the cog issues I mentioned (drives me nuts cause I am a wordy person)

Balance issues (mostly to the right)

Choking frequently (most days at some point on thin liquids)

VISION has become HORRIFIC

There are others...right now I haven't woken up enough to recall.

Gotta jump to work but wanted to respond.

Have a great day!

Tinker

[loveisforever]

only had five wihte matter in my mri one barly in corpus thing with diegnosses

i have been haveing problumes since i was younger but knew i had it all nerolugest where saying possibule ms or ichemic .... i never had cognitive problumes till later in life but allways had pain and stiffness lol but when i got black dots and lines in my eye and changed my nerolugest i got my diegnosses still dont have wihte matter in optic nerve or cervical lol so i say stay srong and is you dont feel the neraligest is listening to u id find another one i had to go throu 5 to find the one who belived me have you had a spinal tap sometimes that helps .....

[tinkernurse]

More of my story...Loooong

Love...

I haven't gotten back to my neuro yet...waiting for my appointment on the 21st...the doc I work for ordered my MRI after I was referred to back to neuro so that I would go in armed w/ something more than signs and symptoms....as for the LP..no...I haven't had one since I was 13. (almost life long neuro issues)

Soooo...over the past year I have been tested for just about anything and everything...

It began with an abnormal blood test with high hematocrit...and macrocytosis (lg. RBCs)....they were then looking at polycythemia and ruling it out... In my mind...I wondered (since I'd had the same abnormality when all of "this" began) if my blood, and not my nerves was the reason for all of this....it has to be something that goes EVERYWHERE cause everywhere is effected.

My PCP wanted to rule out lung stuff...tried to say I had COPD cause I smoke (I do NOT have COPD)

( I was having issues with breathing...I think it might have been "the HUG" or something....comes and goes....and THEN I got MASSIVE fatigue that lasted for 2.5 months)

I went to the pulmonologist who thought it seemed autoimmune (I recently became allergic to the sun, am not on meds that are causing photosensitivity and have olive skin)...everything there came back normal...neg ANA....(pulmo thought maybe I was just too fatigued to breathe well)

She sent me for a sleep study (no apnea)....and to the hematologist....B12 Great..folic a bit high....no anemias.

The sleep doc thought it sounded like MS (HE is the ONLY one who knows my ENTIRE history)

My heart came back fine on echocardiogram....my breasts have no lumps...I had some mild lympho and monocytosis that corrected itself...I DID pop POSITIVE for past history of Epstein-Barr AND cytomegalovirus but nothing in recent past. (funny I don't recall having either of those two and mono doesn't seem like something you forget)...My hormones and cortisol are within normal limits

My blood has been taken and tested and yadda yadda....all year long....same macrocytosis but nothing else there.

I had a month or so where it seemed like I was back to normal...my fatigue vanished like it came..I started writing again....I even felt well enough to go out with my BF and BFF.....UNTIL...

The week before Thanksgiving it started rolling in like fog....by Thanksgiving day I couldn't see well...was EXHAUSTED and the cog fog was back in full force....That Saturday I had numbness on my inner calf on left...by Sunday my outer left thigh was numb.

A week and a half later my foot was feeling more weird than ever before....none of my toes would curl....that was weeks ago...it comes and goes but is never normal by any standard....The last time this thing happened it was for 48 hours and gone..this time its been weeks.

Soooo that's a lot of it....but again, I'm sure not all.

Time for sleep...thank God for this place...regardless of what "this is" I know many of you will totally get this.

Sweet dreams..
Tinker

[22cyclist]

Make sure that the doc you work for ordered the MRI to rule-out MS. That way they will get all of the correct slices in the MRI that they need and also all of the needed FLAIR images which are important in seeing MS lesions as well as SPIN echo. The protocol is specific and will point the neuroradiologist in the right direction when reading the films.

Good luck on the 21st!
Lisa

[tinkernurse]

Lisa,

He didn't order it to r/o MS...being ENT he went for HA with past hx of M/S work up...Our scheduler who ordered it let the ppl at the imaging center know my hx and they suggested I go to the closed MRI with 3T magnet so I did....Not sure about the slice sizes they used.

Funny I was looking at the sag view of my films and saw the scattered foci ALL over the place....near the ventricles...in the cerebellum....all over....they are small but many....Trying to joke things off I told my BF I have "bling on my brain".....I can't see the shapes (I'm going to put them on the light board at work on Monday)

I know these weren't there on my previous films....

How long do lesions typically remain "bright"?