Multiple Sclerosis Community
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147426 tn?1317269232

Limbolanders - Count Off!

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!


212 Responses
Avatar universal

History of distinct attacks? Yes
MRI lesions;  Only had brain MRI, so far, and no lesions
LP : not had one yet
How many Neuros so far: 1st neuro appt Jan. 14th

Avatar universal

History of attacks:  Yes
Abnormal neuro exam
Lumbar Puncture:  Normal
MRI Scans: 5 Normal/awaiting results on latest will know in 10 days.
VEP. Abnormal, pale optic discs ophmologist said optic neuritis?
Time frame of 13 years!!!
Neuro 1.  Said 99% certain I had MS but then changed his mind when I went so long without further attacks but still believed it was neurological.

Neuro 2. current one that I seeked for second opinion is quite definate that I have Transverse Myelitis.

I have a clear sensory line below the thoracic and other things that make him believe it's TM. This is still just his opinion I still have no diagnosis unless you count that as a diagnosis.

Just had a full spinal MRI will see him soon.  On Gabapentin 3 times a day for the burning and parathesias that I get. Believe I am getting worse and it scares me. Want an answer (I think)

Limbo Lander, Udkas.
359574 tn?1328364024
History of distinct attacks? Yes
MRI lesions;  Yes
LP : Negative
How many Neuros so far: # 2

Diagnosed with Transverse Myelitis, but still lurking.
281565 tn?1295986283
#4 of the undiagnosed

History of distinct attacks? Yes
MRI lesions; Yes
LP: Haven't had one yet
How many Neuros so far: 3, going to back to #2.
620877 tn?1282767697
History of distinct attacks? I think so - I have "episodes"
MRI lesions: one UBO on corpus callosum
LP: Haven't had one yet
VNG/ENG: "normal range" with the exception of bilateral weakness to caloric testing
How many Neuros so far: 1, seeing #2 Jan. 8th

428506 tn?1296560999
I'm not sure I count, but I keep haunting this place so I may as well sound off!

History of distinct attacks? Not really.  Some ups and downs, but mostly steady accumulation of symptoms starting Summer '07.

MRI lesions: ~8 on brain, they don't enhance, 1/2 are tiny (punctuate), other half concerning, 1 involved in corpus callosum.  Unchanged between Feb and July '08.

LP : Negative!

How many Neuros so far: (blush) 3, and also a neuro-ophtha.

Various non-specific positive blood tests.

Please note that over time, my symptoms changed and spread.  As such I don't think my condition is neurological.  I have been through the work up and share a lot of common symptoms and experiences with the forum.  So while my path is diverging, I'm still here for support and to share anything I may learn that I may be able to pass on to other Limbo Landers.
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