Limbolanders - Count Off!

[Quixotic1]

Because this forum is so inclusive we have as many or more people still in Limbo than diagnosed.  But, we haven't taken stock of them for several months.  I need a good listing of you so that when we answer we don't have to remake the wheel.  Also, I would apreciate all who haven't done it yet, to write up a summary of your story so far and put it on your Journal in your Profile.  That way any of us can come up to speed when we talk to you.

ALL of you who post or might post please help with this:

History of distinct attacks? Yes/ No
MRI lesions;  Yes/No
LP : Positive/Negative
How many Neuros so far: #

Let's keep this bumped up and try to reap the whole forum!

Thanks,

quix

[ack65]

History of distinct attacks? Yes over the last 6 years for sure but could be longer.
MRI lesions;  UBO's in brain MRI, none in c-spine
LP : not done so far
How many Neuros so far: # 1 said Migraines 5 years ago, am on #2 waiting to see him about MRI results done 3 weeks ago

[stella213]

History of Distinct Attacks : YES
MRI : HAVEN'T HAD ONE YET
LP : DIDDO
#of Neuros : 0

Quix I'm working on my story over in my journal. It's locked right now because it's nowhere near finished. I can't begin to describe how much it wears me out working on anything more than a few paragraphs and know it must be hard on you doing health pages and taking care of all of us the way you do.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Just say the word and I'll unlock it. I just want to make sure you know it's not done.

OH! Listen I've made some progress and you may remember I knew nothing when I got here rt? I had a bout of optic neuritis in '04-got the records to prove it. Also got my other records and they show two visits to the er a yr. and a half apart when I couldn't breathe, felt like someone was squeezing around my ribs, and a sharp,stabbing pain in my abdomed-sounds like something I've heard about here involving an anaconda. ??

Shocking really. I didn't even remember until I saw the records. Can't wait to have my tests done so I can finally have an answer.

Stella

[Celery47]

Well hey everybody!  Count me in as a limbolander (awesome name, btw).

History of distinct attacks? Yes - maybe 3?  Five weeks of ascending numbness, feet, legs, hands, face up to my eyelids; several months with a numb piece of the sole of my left foot; about two months of a cold patch on my left calf.

MRI lesions: None!  I've had 3 brain MRIs and they look totally clean - and totally awesome!!!  How cool is that, we get to see our own brains?  You guys should request a CD of the images if you haven't already, because it's WILD.  Haha, sorry, I'm just really into brains :P

LP: Positive - 10 OCBs unique to CSF, 9 white cells, but everything else good (protein, IGG ratio, glucose, and no syphilis, hehehe - sorry I shouldn't laugh at syphilis).

How many Neuros so far: Three!  One of them a one-time specialist, and two regular neuros.  I like the one I have now.  He seems extremely rational.  My mom once laughed at his kid, though, and unfortunately, he DEFINITELY overheard it... hahaha, ohhhh mom.  Yeah, that was not a happy appointment.

I just want to say, it is so, so, SO good to be able to read all of yall's stories.  This limboland drives me straight up the wall sometimes and, well, as horrible as it is that all of you all are going through this monkey business too, it's just so good to know I'm not alone!  So, I just wanted to say - thank you for sharing.  

[twist330]

Hi all,
Thought I would let you know a bit about me.
Back in September 2009 my fingers on my left hand started to go numb, I was seeing an elbow specailist at the time as I had badly injured my elbow a few weeks earlier. He was convinced that I had carpel tunnel syndrome even though all the tests came back negative and it was all my fingers going numb and by now so was my arm he was still pushing to do CTS op.  When I refused he suggested a steriod injection then if it was CTS it would resolve the problem in the short term and we would know I definitley needed the op. I did the steriod injection it did nothing.

In the mean time I had been to see my GP as I was upset that the specailist was being so single minded. By now it was mid-November and the feeling of pressure/numbness was not only in my arm and hand but was going over my head. He referred me to a Neurologist.

The Neurologist examined me and arranged an MRI of the brain and cervical spine. He felt that I had brisk reflexes.
The results of the MRI showed a solitary T2 Hyperintense focus in the right parietal subcortical white matter which is non specific and by no means diagnostic of demyelination.

By now I was having a problem with my right eye, not the sight but pain around it and moving it and it is a real problem to look up or straight a head for any length of time. I was now getting pins and needles down my legs. I also have spasms in my limbs.

My Neurologist arranged for brainstem potentails, EEG and a lumbar punture. and all of these have come back normal.
He has also arranged another MRI with contrast which I have not had the results of yet.

It has been 7 months that my symptoms have gradually been getting worse I am not taking any medication and my neurologist has suggested I have a second opinion as he does not know what is causing my problems.

So that's me for the moment.

[unmaestro]

History of distinct attacks: Yes, For about 2 years I've had weird, extreme symptoms. Since the L'Hermitte's Sign first arrived around 6-9 months ago, plus tingling and burning, I've been going to doctors.
Lesions: none have been picked up on yet
LP: haven't had one yet
How many neuros have I had?: On my first one but seeing a specialist in April

[mrswillie]

History of attacks: At least 2-3 "episodes"
MRI: no, normal
LP: never had one
# of Neuros: 1 so far