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

[sperry77]

Well, I'm new here but have been luking for awhile. This will be my first post! :) I will do an intro about myself soon. When I get some quiet time :)

Attacks: More than a few over many years.

MRI lesions: 2003-a few tiny non-specific lesions
                     2011-Aug- More than 9, done without contrast. Radiologist wants to do another with and without contrast. Waiting for my appointment.
They also found a syrinx at my C5-7.

LP: 2003 negative

Neuros: Been to a couple way back when symptoms started. Went to MS clinic then as well. They said if another symptom appears to go back. Never did, plus my neuro moved. should have gone as I have gotten worse with more symptoms over the years. Currently doc. put in a referral for a neruo, so I'm still waiting for my first appointment in years.  

[jibjen]

History of Attacks: At least 1 that can be defined (mostly sensory), DX. with TN in May 2011 and now spatacity in hands October 2011
MRI: Yes,  (20 lesions) Next MRI Nov.
LP: Yes, though inconclusive, hospital screwed up and did not submit correct specimen
# of Neuros: 2, First Nuero said Migraine and age related lesions,  On #2 (second opinion since May 2011 who said MS on 1st appt. and diagnosed my facial issues as TN)

JibJen

[emmyvera]

History of attacks: 1
MRI: Yes, waiting on results (tested for MS with/without contrast)
LP: No
# of Neuros: 1 (thinking of getting a second opinion at some point)

[sllowe]

Suma - I used a bad word - Sorry, I'll be more careful.

BeachC - it is so sad to have so many undx'd. Your so right about the field - while many things advance, others falter.

To get this discussion back to it's initial intent:

Limbolanders:

Attacks:
MRI lesions:
LP:
Neuros:

[Sidesteps]

History of distinct attacks? Yes - 3

1st - INO, abnormal rhomberg's, ON sx but no latency, right leg lag, banding sensation at waist)

2nd - Facial pain

3rd - Hearing fluctuations, tinnitis and palatal myclonus

Last examination proved: right foot drop and decreased sensation on left leg and other patchy areas and hyper-reflexes on left knee.

Assorted typical sx with all three "atacks"; parathesia, weakness, fatigue, balance/coordination issues, visual disturbances - double vision (ongoing), blurring, decreased visual acuity, color saturation differences, eye pain on movement, scotoma -  sharp pains, hug around waist, right foot drop, unexplained spasticity in right side now right side weakness.

MRI lesions;  Yes
(Radiologist missed on the report but 1 visible perventricular lesion)

LP : Negative

How many Neuros so far: 4th - I'm now under the care of a MSologist whom I love.

[jumpinjiminy]

Well, since it's here, I'll add mine.

Attacks: 5 since last year.
MRI lesions: None
LP: Negative
Neuros: 3 and advised to go up a level to find a fourth.