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

[doni54]

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

[Udkas]

UDKAS

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.

[hbananas]

History of distinct attacks? Yes
MRI lesions;  Yes
LP : Negative
How many Neuros so far: # 2

Diagnosed with Transverse Myelitis, but still lurking.

[mokibear]

#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.

[goofysmom1]

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

Chrisy

[wonko]

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.

[crswin]

History of distinct attacks? Yes (currently in my 4th in 6 years)
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)

[michelleric]

HIstory of distinct attacks? Yes, had a 3 week episode of dizziness, blurred vision, numb/tingling in July.  End of Sept. diagnosed with Optic Neuritis, and dealing with numb/tingling, foot drop, dizzy, lightheaded, Leg cramps(severe)

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

[lbradley35]

1) History of distinct attacks?
    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, drop foot (so I wear a brace), I'm deaf in my left ear due to the lesions damaging my 8th cranial nerve lots of pain, burning,numbness,bowel and bladder problems and now I'm waiting to find out if I have cancer.  So If I were a gambler I would be rich because I keep winning all these disease's.

Multiple Sclerosis has made me appreciate all the people and gifts in my life, so I am grateful to GOD for all HIS blessings. I know he has a plan for my life.....and I'm trying to learn to not question why, but what can I do to trust HIM more, what can I do to help others and how can I be a better person.  

Lori

[Sailorsong]

1) History of attacks: Yes for about 20 years, didn't start checking into this until 2-3 years ago.

2) MRI lesions: Not sure,

3) LP:  None done yet

4): How many Neuros:  4 so far

[Wobbly]

#11 Limblolander

1) History of attacks: Yes

2) MRI lesions: Yes

3) LP: Neg

4) How many Neuros: 5

[spitfire989]

History: Been having episodes for years, more pronounce within last year.       MRI lesions----yes,----multiple lesions(moderately extensive changes of white matter disease in the periventricular region. Additionalperiventricular changes are identified.---Some of the white matter are in the range of 6-7mm.-----A linear area of white matter focus involves the posterior horn of the Left ventricle measuring 4x20mm....Spimal MRI------c2-3----broadband disk spurs,----c4-5 broadband disk osteophyte complex; with additional disk hernination/protrusion in posterior central location, measuring 5mm..---c5-6---4mm soft disk protrusion w/ slight cord decompression w/o stenosis.--C6-7---moderately large right paracentral bone spur measuring 5mm in its AP and 8-10mm in its transverse dimension.--Moderate cord compression but w/o stenosis---------LP- scheduled for December 3rd.------How many neuro's 4.-----Scheduled for Evoked Tests every Tuesday in December.    ------Meds to date:-----Inderol(40mg)--Vicodin(5/500mg)----Fiorcet (PRN)----Neurontin 600mg-------Prednisone(20mg)-----Flexeril-----Ultram------multi Vit,---Vit D,----Iron----BAspirin.                    

[Sarahsmom46]

I'm not sure where I fit in for sure so I posted to the limboland thread.  I do have a clinical diagnosis of MS at this time.

Distinct Attacks # - 2, May and November 2008

MRI Lesions:  7 lesions in the white matter, neuro suspected gray matter involvement.

LP - 2 ologoclonal bands, slightly elevated protein

How many neuros - 2

Meds - Treated recently for the 2nd time with IV steroids and prednisone taper.  Neurontin.

Neurologist said I am a "probably " MS case and will treat as MS patient for now  without DMDs unti the dissemination in time criteria is met with a new lesion or additional o-bands.

[tot_teacher]

History of distinct attacks? Yes
MRI lesions;  Yes (at least 2) more may show w/ latest 11/2008 contrast MRI,
                     no thorasic MRI done yet
LP : not done yet
How many Neuros so far: 2    1st-1996 and 2nd-2008

[nette573]

History of distinct attacks?  yes
MRI lesions; Yes, 2 havent had a full spine mri yet
Lp have not had one yet
Neuros - 2
Lynette

[doni54]

Wow, Quix, this was a fantastic idea!!

[saveone]

History of distinct attacks? Yes, although not originally recognized as such.  Always blamed them on something else.

MRI lesions;  Yes,  Report; Demylination plaques involving the right cerebral peduncle and surrounding the frontal horns of the lateral ventricles, consider MS

LP : Not at this time

VEP: mild prolonged central somatosensory conduction after left tibial nerve stimulation.  Auditory and Visual were normal.

Neuro/psych eval: waiting on results

How many Neuros so far: # 1

[slightlybroken]

1) History of attacks: Yes

2) MRI Lesions: 4-5 nonspecific in my brain and "something" that has showed up in 2 different MRIs of the c-spine in the same place (that runs between C5 & C6).

3) LP: Negative

4) How many Neuros so far: 5...I still see neuro #4 but she sent me to neuro #5, a MS specialist.

[ambrosiawind]

History of distinct attacks? Yes.

MRI lesions;  MRI to be done in january

LP : Not done yet

How many Neuros so far: going to see my second

finally just got a dx of neuropathic origin going on in nether regions, peripheral neuropathy,  and nether region spasms.

celebrex 100mg + 2 tylenol 2's every 4-6 hours(dr thought it was my back) march 2008
Nortriptyline 10mg, july 2008 after months of pain
after a flare up i was put on lyrica 450mg,early october 2008
after another flare up put back on nortriptyline 10mg last week
after recent dx nortriptyline dose upped to 20mg or more if still not enough yesturday

[ginak]

History of distinct attacks? Yes
MRI lesions;  No -brain w/o contrast in Sept 2008 brain w/contrast 2008, cervical spine with and without in Sept 2008, bone scan October 2008- All negative. No thoracic spine MRI done as of yet.
LP : Negative for oligoclonal bands but + for myelin basic protein, dx with Epstein Barr Virus
How many Neuros so far: # 2. Neuro #1

[Tahiri_Veila]

History of Attacks? Yes many more than 2.
MRI? Clean
LP? haven't had one
Neuro's: 2 given up on neuros as my PCP has done so much more. Split Diagnosis must wait for confirmation.  MS or Fibro.

Tahiri

[Super_sally888]

History of Attacks: Probably.  Not clear what cause was.
MRI: not clean. findings not typical.
LP: none
Neuros: 2 + neuroopthamologist, then gave up.

Pregnant now and doing great, and long may it continue...

[julia111]

History of Attacks: YES

Oct 2007, Open MRI .25 Tesla, Brain without contrast - Normal

Oct 2008, Closed MRI 1.5 Tesla, Brain without contrast - ?? Seeing Neuro #3 in January 2009

LP: not ordered

Neuro's: I have an appointment to see #3 in January 2009

Current Dx. - Fibromyalgia

Reasons for seeking another opinion:  
- Right sided facial numbness
- Slurred speech
- Balance problems

. . . there's more, but those are the main symptoms that don't seem to correlate w/ Fibro.

[JulesL5S1]

History of distinct attacks? Yes
MRI lesions;  No - but have only had 1.5T MRIs
LP :  not yet
How many Neuros so far: 1st neuro dismissed idea; 2nd neuro not convinced of MS but isn't giving up the search for what is wrong.

Cheers, Jules