Limbo stinks

[hbananas]

There's nothing to do at my one-and-only client's today, so I stayed home.  Called the neuro's office to see if they had the VEP results from yesterday yet, but they don't.  Said to call back Friday.  Even when they get it back, nothing is going to happen until after my second set of MRIs in April.

I might not have much to do until the middle of February when I start my new job (if they actually hire me--still in limbo on that, too.)  So I stew about my diagnosis and analyze every little twinge, past and present.  I was also hoping to have my LP results in the mail yesterday.  Maybe they'll come today.  I filled out a form to request them while at the neuro's last Thursday, but they were shorthanded and nobody was available to make me a copy.  Never mind that my chart was right out there being looked at.

My first MRIs show one lesion in the brain and 3 in the c-spine.  My CSF doesn't have any o-bands, but I don't remember what it was that prompted the neuro to say something indicated inflammation. I'm especially curious about the igG, because I don't remember what she said about that.  She's going with a diagnosis of transverse myelitis for now.  She re-checked all of my reflexes, did the Babinski test (I think I'm neutral) and did a great deal of wiggling my feet up and down--analyzing muscle tone/spasticity?  She didn't say.

Meanwhile, I have some continuing education self-study to work on, laundry to do, and I probably should go to the mall and do some walking.  And I have some library books waiting for me.  Or I might just take a nap.  There.  Venting accomplished.
Holly

[hbananas]

HI.  AS I UNDERSTAND IT, TRANSVERSE MYELITIS CAN BE A SYMPTOM OF MS, OR AN IDIOPATHIC DISEASE OF ITS OWN.  YES, AS QUIX PUTS IT, THE SPINAL LESIONS SCREAM MS, AND BRAIN AND SPINE SHOW DISSEMINATION IN SPACE, RIGHT?

I BELIEVE SHE'S LOOKING FOR DISSEMINATION IN TIME, SINCE I'M STILL IN MY FIRST EVENT, AT LEAST THAT ANYBODY HAS OBSERVED, SO THAT'S WHY THE REPEAT MRI SCHEDULED FOR APRIL.  AND MAYBE THE VEP WILL SOMEHOW BRING THE EYE THING FROM YEARS AGO INTO PLAY.

WE'VE ONLY BEEN AT THIS FOR A MONTH, SO I'M NOT READY TO JUMP SHIP.  SHE'S GOING THROUGH ALL THE STEPS AND COMMUNICATING WELL ABOUT THEM.  MY SYMPTOMS AREN'T BAD--I'M JUST NOT A PATIENT PATIENT.  WHEN I READ WHAT SO MANY OF YOU HAVE GONE THROUGH FOR YEARS, I FEEL REALLY FORTUNATE THAT THINGS ARE MOVING SO FAST.

[Sonaya]

I am in limbo land also and don't even know if I have MS or anything, I have a possible diagnosis of Familial Hemiplegic Migraine which just doesnt quite sit true with me.
I have to agree with Ess about letting things get out of hand and everything does seem magnified when we start thinking about it all the time so keeping busy is really a must for me otherwise I get far too frustrated and moody and start taking it out unintentionally on those around me.  Venting is good but then I need to keep active and occupied or my mind will run riot.

What I have learned, and ess put it true to words, is that my symptoms still do intrude no matter what and thats the stuff I write down and make sure I tell my doctors about.

Its only been 5mths limbo land for me.  Ive had tests done and tried my best to get results before I saw my specialist appt- which was a 4wk wait) Now I only have until this Frid and I already know that they want to right me off as FHM but I have a few new symptoms for him that don't fit in so the best I can do right now is just redo my timeline and DEMAND to see a neuro and hope that I get a good neuro because I know Im going to be in for a long wait and more limbo.

In the meantime I just have to focus as best as I can on now, live life, be there for my family and try to deal as best as I can with my symptoms that can sometimes take me down for a days on end.

But in saying all that I know how you all feel limbo sucks but thank goodness for the forums for venting.
Just my two bobs worth

[essdipity]

I can't comment on the clinical aspects of things, but I do know that sitting around and ruminating is a bad thing. You don't want to obsess, at all costs. For one thing, life's too short. You have 'now,' and now can be a pleasant time. For another thing, you could start to pay too much attention to the various twitches and pains you no doubt have always had, like everyone else, but in the past just shrugged off 90% of them as 'life.' If you start listening to yourself too hard, you'll magnify everything. Then you run the risk of losing cred. with the doctors, and even with yourself. Second-guessing isn't good.

The symptoms you have that are significant will still intrude no matter what, and that's how you can get some perspective. I'm an old hand in Limboland, so I know these things well.

There, end of pep talk. Now I myself must do some laundry and clean the kitchen!

ess

[young at heart]

I'M GONNA PLAY DEVILS ADVOCATE HERE----WHY IN THE HEY--DEY IS THIS NEURO GOING WITH TRANSVERSE MYELITIS WITH A LESION IN THE BRAIN.

MY UNDERSTANDING IS WITH TM IT'S A CONTINUOUS LESION EXPANDING AT LEAST ONE VERTABRA( SOMEONE JUMP IN AND CORRECT ME IF I'M WRONG)

BUT YOU STATED 3 LESIONS IN THE C-SPINE  AND 1 IN THE BRAIN.

WHAT HAS ME PUZZLED IS YOU DESCRIBED THESE AS LESIONS NOT 1 CONTINOUS LESION.

WITH A LP SOME SHOW O-BANDS SOME DON'T.IF THE IgG SYNTHESIS OR INDEX IS HIGH IT SHOWS INFLAMATION,IF THEY TESTED FOR THE MYELIN BASIC PROTEIN BEING HIGH,THIS SHOWS THAT MYELIN IS BEING DESTROYED.

I REALLY HOPE YOU'LL SEEK A SECOND OPINION .

JUST MY THOUGHTS

T

[CtResident]

Does being in Limbo permeate every thing? I mean, really.

I wake up in the middle of the night with it!

I had a dream that I had done the whole works on my hair: shampoo, conditioner, mousse, and hairspray and looked at the clock......I was supposed to be on the way out the door to get my EEG done. You're not supposed to have anything in your hair for that. And I don't use anything in real life beyond conditioner. Soooo, what a panic, what a fuss. Gee whiz! ROFL......

Then I am composing posts to you all while I'm waiting for the teapot, etc.

I cancelled going to WalMart today because I don't really NEED to get soap & socks & protein powder. And because I felt like a rock nailed to the couch, I could not get up for nothing. I forced myself up. My usual 20 minute power naps have become 1 hour long.

Is this what it's all come down to?

Suzanne

[biowham]

I've only been in limbo for two days, and it already sucks.

E

[AMERS389]

I agree limbo stinks..I am tired of thinking about it all..I wish I could fill my head with happy, peaceful things but the MS possibility keeps flopping to the surface. Good luck with your diagnosis..I know how hard it is to wait...Praying for you too...and all of us...Amy in Austin