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Multiple Sclerosis Community
Limbolanders - Count Off!
by Quixotic1, Nov 27, 2008 02:11PM
, Nov 27, 2008 02:11PM
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
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
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
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.
MRI lesions; Yes
LP : Negative
How many Neuros so far: # 2
Diagnosed with Transverse Myelitis, but still lurking.
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.
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
Chrisy
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.
MRI lesions: C spine and Brain are clear (2 in 6 years); I go for my 1st thorasic and lumbar this week
LP : Negative from 6 years ago; doc wants another done in the near future :(
VEP Normal- (past bout with optis neuritis)
Nerve condution- loss of sensation in both legs; loss of sensation and weekness in rt arm and face.
How many Neuros so far: 2, but they are in the same group (I 'fired' both)
MRI lesion, 1 on brain, waiting on results of Thoracic and Cervical MRI. Showed LOTS of spine issues, but awaiting neuro to read them.
LP: Didn't have not recommended
VEP: Didn't have, not recommended
2 neuros so far, sticking with the 2nd. She is great. I "should" have a diagnosis within 2 weeks.
Thanks,
Michelle
Yes, I usually have two really bad attack per year and I have to take the
Solu Medrol Iv for 2x for 4 days.
2) MRI lesions; Yes, My neuro said I have so many she wouldn't tell me how
many I have.
3) LP : Positive in 1995
4.) How many Neuros so far: # 4 -
The first Dr. was a jerk, the second Dr. was wonderful. I then moved out of state for my job. The third Dr. canceled 5 appt's in a row while I was in a severe attack. He also miss diagnosed a problem with C2, C3, & C4...so I had surgery because my brain was not getting enough blood and spinal fluid and the disk was cutting my nerve. I think he was on drugs. My current Dr. is a MS specialist and I love her. She takes excellent care of me and she and her nurse call to check on me.
5.) Diagnosed in 1995 - 1996 started Avonex- I have failed all the CRAB medications, so I am now on Tysabri and it has show slight improvement.
6.) What MS has given me : Narcolepsy, Graves Disease, Vision loss, loss of feeling in hands and both legs