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

[Akcowboy]

  History of distinct attacks----------yes
  MRI lesions------------------------------2
  LP--------------------------------------------N/A
  Neuros-------------------------------------2

  Just had more blood work done this month and I'm very low on my B12 and now taking shots daily and iron

  Cowboy

[biowham]

Here's my limbo status--

History of distinct attacks? No. Slow, gradual, progressive.
MRI lesions:  Yes--a handful over 3 mm, many more "pinpoint." "Myelopathy" in t-spine.
LP: Negative
How many Neuros so far: 3, going back to Neuro 2, maybe

Bio

[pennst8r]

I think I'm #26

Distinct attakcs? yes
MRI:  2 years ago, no lesions...waiting for SOMEONE to rescan!
LP: negative
# of neuros: 4 ( I THINK this one's a keeper though)

Penn

[Sunnytoday]

History of distinct attacks---- Yes
MRI lesions--------------------------braine stem lesions, clear spine MRI (no contrast)
LP ---------------postive- high protein and 2 O bands
How many Neuros so far------- 4 neuro's, 5 other random specialist (rheumatologist, etc) and 3 MD's. Moving on now.....

~Sunnytoday~

[TeriK1972]

Distinct attacks:  Yes but this is the worst by far.
MRI Lesions:  No
LP:  No
Neuros:  3...2 Neurologists and 1 Neurosurgeon

We are just starting this process.

[OperaMBA]

Attacks : yes 4 since 2001
MRI Lesions: 1 T spine several non specific brainers
LP: elevated proteins in 2001 and 2008
Neuros: 3 N's - 1 MSS

Opera in the house

[syndismilez]

1)Attacks-Yes. Especially after bronchitis (happened 2 times in 1year)
2)MRI Lesions- Neuro said normal but mentioned periventricular white matter changes
3)LP- Normal no O bands
4)Neuros - 2 (one being second opinion of a Dx of MS or Migraines)
Haven't been back to see Neuro in over 1 year. Got tired of Dr visits.
Will be going back when I have another distinct attack :). Hopefully I won't have to!
Cyndi

[HVAC]

Attacks: no  but progessive symptoms neurologists all been Dr.'s idea
MRI: 2 Brain MRIs lesions both times one lesion disappeared. 1 Spine  MRI nothing
LP: Refused 2 said they would most likely be negative
VEP abnormal ear and eyes but am deaf in one ear and eyes don't work together.
The gambit of eye tests all neagtive
Neuros-  3 my latest is MS specialist and says it can't be anything but MS but no diagnosis. Go back for third Brain MRI in Feb.

[tinycandi]

History of distinct attacks? yes
MRI lesions;  clear...1 open MRI of my brain without contrast in January 2007 and 1 closed MRI of my brain with contrast in February 2007. Nothing since...going to push for another MRI with contrast of my brain AND spine this time.
LP : negative in february 2007
How many Neuros so far: 2...the first retired. i just started seeing the second and so far i'm hugely disappointed. we'll see after my second visit on december 11th. i may be finding another neuro.

*also...had an EEG in october which showed abnormal results (but no definite seizure) and just had a repeat EEG in november to see if they could find anything more definitive. i've had a lot of symptoms since october 2006 and they've ruled out pretty much everything. so at this point it's just a matter of waiting to see if MS shows up. i hate the waiting.

[Fluffysmom]

History of distinct attacks: YES (mostly sensory), 4 this year

MRI lesions: YES  many, many small lesions in my brain

LP:  negative

I'm currently on neuro #3, an MS specialist.

[Lori814]

How LOWWWWW can we GOOOO?  

History of distinct attacks? Yes
MRI lesions;  None showing, but SSEP abnormal
LP : not had one yet
How many Neuros so far: 1 but am seeing another in Jan.

[Janette2836]

History of Attacks: YES
MRI lesions: NO
LP: Normal (if that is possible for me  :)
How many Neuros: 1

Janette

[ch81]

History of attacks: Yes (2)
MRI Lesions: Yes (2 small in pons/midbrain)
LP: Normal (performed during first attack)
How many neuros: 2

[Jason732]

History of distinct attacks? Yes. 1st in 2/08, 2nd in 11/08
MRI lesions;  Yes. 1st in C3/C4, 2nd in T6.
LP : Positive for oligoclonal bands (9, IIRC) IgG index 20.2
How many Neuros so far: 2

[tjammies]

history of distinct attacks ? paralysis numbness, taken to hospital , first dx stroke then unclear poss ms
mri lesions? scan done waiting results
LP told it was unhelpful as bands in serum and blood
how many neuros so far? 1 neuro waiting on second appt with same neuro
on first examination reflexes brisk, clonus, hoffmans positive, unsure on diagnosis waiting on mri results

[nncdalton]

History of distinct attacks? Yes  
MRI lesions; No but I have been told that there are "odd" areas
LP :Negative
How many Neuros so far: 3

[buriedinfur]

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

History of distinct attacks? Yes - several over the past five years
MRI lesions; several UBO's some periventricular one juxtacortical.
LP : Going to get stabby'd on the 15th. Wish me luck.
How many Neuros so far: one. About to switch to a new one that I can communicate with in a more effective manner.

[biowham]

Quix...worth analysis? E.g., among dx'd folk, is there any correlation between # of docs and length of time between symptomatic and dx? Among dx vs undx, is there a significant difference between number of docs seen? And among dx with long hx between onset and dx, how does that number of neuros compare to the number the limbolanders have on average?

In other words, are we answering the question: "Does a long road to diagnosis equate to a greater number of neurologists". Do those of us who end up in limbo (and those who do but ultimately are dx'd) HAVE to "doctor shop" to get the right dx in the end?

Bio

[biowham]

Oh...and another question that comes to mind as I read the responses on both of these threads: Do people who are Dx'd with PPMS have to wait longer, see more docs, etc.?

That's probably already been documented, but it's an interesting observation.

Bio

[Quixotic1]

I agree.  since I know we have close to a hundred people posting and at least that many lurking, I am asking everyone to post their info - even if that is the only post they ever make, lol.

Let's hear from everybody!

Quix

[wonko]

Also of interest to the question of how many doctors before diagnosis:  There is the category of folks, not accounted for in the running tallies, who get out of limbo by getting a different dx.  

I'm not saying they need or even can be counted, since many have moved on. (I've packed my bags, but just can't leave the support yet!)

[ShadowsSister]

Since I am not in "Limbo" I am not sure if you wanted me to post here or not.
I had several MRI's during the first three years. (1986-1990)
I was DX after the first one.(Jan.1986)
It showed Three major lesions and many minor ones.
L/P, several both Positive and Negative results
The Dr's all think I had the first attack in 1973, but no DX.
I had several attacks after that where I thought I had a very bad case of the flu, and it took me months to recover.
The last attack started in 1984 and never stopped. I have not had a remission since.
Too Many Neurologist too count at least seven. I stopped going to them. But I now have a great team of Doctors who all work together.
I can no longer have MRI's due to the spasms being so actived.

[Georgeios]

History of distinct attacks? Yes
MRI lesions;  No (Gray parts, not White)
LP : Yes but all looked ok
How many Neuros so far: # 4

getting worse, got really back shocks down my legs and all sorts of other problems, neuro wants to take me back in to repeat tests and compair them, as of yet however they do not beleve it is MS, but in the same breath, they dont know what it is......

[angie99]

History of distinct attacks: Yes

MRI lesions:  Brain-NO,  Spine-Yes T4 (Syrinx)

LP: Not had one as of yet.

Neuro's:  2 jerks and 1 optho

So far: Syrinx in Tspine (so they say), Trigeminal Neuralgia, Partial Posterior Viterous Detachment and just in last 2wks an enlarged thyroid.

[Solaire]

History of attacks: Yes
Lesions: yes
LP: None as of yet
#of Neuros: 2 - first verified a lesion in left frontal lobe and frosting in frontal horns but wouldn't tell me anything even when I asked why I was having a tremor and various other problems.  He suggested I see a therapist.  When I moved to another Neurologist I saw his notes stating that my symptoms could be psychosomatic.  2nd Neuro specializes in MS and during the neurological exam and  review of the previous Doctos findings, she said it suggests MS, so we'll see how it goes, waiting on results from most recent MRIs.

[MAGrl]

History of attacks: One major

MRI Lesions: Yes, 3  (C2-C3)

LP:  negative except for increased MBP

# Neuros: 3  but..neuro 1 sent me to MS 1, MS 1 sent me to MS 2

Somewhere between CIS and MS; MRI's & Exams every 6 months for now.

[Tinners]

History of attacks: 1 current (7 to 8 weeks)

MRI Lesions: No MRI as of yet..

LP: None yet

# of Neurologists: 1 as of 12/11/08

I'll post another when I have more info :-)

[chmagu76]

Is this for undiagnosed people?  What's LP?

Christina

[fuffycat]

History of distinct attacks? Yes
MRI lesions;  no
LP : multiple O bands (but the same pattern was found in the blood serum)
How many Neuros so far: 5

[Rachelinpain]

History of distinct attacks? Yes at least 4
MRI lesions;  No
LP : Negative
How many Neuros so far: 3 plus 1 neuro opthamologist

[novakf]

Attacks : yes 2 attacks 10 months apart, both affecting vision, cause unknown.
MRI Lesions: None on brain MRI, no cervical MRI done yet.
LP: Not done
Neuros: 1st

[Octarine]

History of distinct attacks?  Not typical.  Four hours of possible Transient Ischemic Attack or maybe hemiplegic migraine in 1991.  About a month of intentional tremor in hand, making my research very difficult in 1993.  Neither of these apparently counts as a distinct attack for Dx.  (First one too brief; second one not acute.)

MRI lesions;  Yes, 4 juxtacortical in cerebrum, none in brain stem; no cervical MRI yet.
LP : haven't had it yet, slated for it but hoping next MRI lets me avoid it!
How many Neuros so far: 3.  

First two told me my symptoms were impossible.  Went years without seeing doctors after that.  Current neuro believes me and has prescribed lots of help, some Rx, some OTC, that really has helped.

[nurseykelly]

Hi!
Bl**dy hate this limboland! More like, deal with all these symptoms without any help land!!

First episode was Dec 05. Sudden onset. Up to this point very healthy.
Balance probs, severe spongy feet, tingling, burning, throbbing, stiff painful neck, brain fog, fatigue.

MRI X 3. Spinal-ok, two brain, one with dye, non-specific white spots. (whatever that means!!!) EVP-ok. No lp.

Had symptoms on and off. Different ones at different times. Never felt 100% since onset.

From Feb-Nov felt 80% better.

In Nov have had worsening symptoms. Awaiting 2nd op. Finding it hard to get about.

Kelly

[Yond]

History of distinct attacks? Yes
MRI lesions;  Unknown (had first MRI Friday 12/19/08, Head, upper spine, lumbar spine)
LP : Not done yet
How many Neuros so far: #  None.

Please see profile for the specific details.

[Momzilla]

I keep trying to post here, but I send my info off to Oblivion, somehow. Or maybe I just don't see my post.  If so, here it is again:

Distinct attacks:  Yes, documented by ER docs and have been hospitalized.

MR findings:  I hate the way they say my brain is "unremarkable."  No lesions.

LP:  High protein levels, other than that -- "unremarkable."

Number of Neuros:  7, count 'em, 7.  And this doesn't count the partner of my present neuro whom I saw while he was away, who asked if I have MS.......

Limping in Limbo,

Zilla*

[jules2212]

Attacks  YES  several
Mri Lesions  YES 7/8 White Matter
LP Waiting for appointment
VEP Waiting for appointment
Neuro's 2   1st Guy [TOTAL FRUITLOOP] 2nd Guy Knows his stuff
Will keep you informed on whats happening it was interesting to read everyone elses info too. Well done for doing this Quix.

Many Thanks
Julie x

[Ahrdee]

"In the absence of pathognomonic clinical features or a definitive laboratory test, multiple sclerosis (MS) remains ultimately a diagnosis of exclusion. Accurate diagnosis is increasingly important with available disease modifying therapy. Unfortunately the rate of misdiagnosis remains around 5%-10%, indicating that 1 in 20 patients thought to have MS has, instead, a condition resembling MS. In this review we describe conditions that may be confused with MS because they can present as lesions disseminated in time, space, or both. Conditions often confused with MS may be inflammatory (systemic lupus erythematosus, Sjögren's syndrome, vasculitis, sarcoidosis, Behçet's disease), infectious (Lyme disease, syphilis, progressive multifocal leukoencephalopathy, HTLV-1 infection, herpes zoster), genetic (lysosomal disorders, adrenoleukodystrophy, mitochondrial disorders, CADASIL), metabolic (vitamin B12 deficiency), neoplastic (CNS lymphoma) and spinal (degenerative and vascular malformations) diseases.

The key to the accurate diagnosis of MS is vigilance for atypical features, suggesting the possibility of an alternative diagnosis."

http://www.springerlink.com/content/cwwyekcqbr948kn5/

[Quixotic1]

We need all of you!

If you haven't answered please jump in

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

Quix

[PastorDan]

Too tired to think this through, but here goes my best shot.

History of distinct attacks/remissions? Not certain, but sounds like it.
MRI lesions;  Four for sure, and some other iffy spots.
LP : Haven't had the pleasure to date.
How many Neuros so far: # Desperately seeking second.
Has MS been considered? 1st neuro dismissed it out of hand, before any testing.

[Nancy T]

History of distinct attacks/remissions? Of individual symptoms, yes. Big bad attacks, no. Lots of stuff happened for about 3 years (lasting 1 day to several months), then leveled off. Always mildly dizzy.

MRI lesions;  Yes, but small, scattered, and nonspecific (age 42-46, mild migraineur, borderline BP & cholesterol). "Clearing of old lesions and appearance of new ones"  according to radiologist (2x)--but neurologists not "impressed." Cervical MRI showed no lesions despite long-standing Lhermitte's!!

LP : Not done. Attempted once--neuro unable to withdraw fluid due to scoliosis.

How many Neuros so far: Three, but the first one offered no real opinion.
#2 (2000-2001): "MS," then "medical student's disease," then "I don't know" with vague mention of autoimmune disease and MS "remains in the background," "goodbye!"
#3 (2002-2003): "could be MS," then "benign paresthesias," "goodbye!"

Has MS been considered? Yes.

And I'll add, AEP very abnormal bilaterally; other EPs not done.

Nancy T.

[PatHC]

Dx 'Mild MS'  December 2008

History of distinct attacks? Yes and  No - some 'attacks' which are only recognised with hindsight as it was never suggested to me that my symptoms could be neurological and that they were mainly stress - including the ON - also some symptoms have worsened over time.

MRI lesions;  Yes - one done 4 years ago abnormal with several lesions on brain and brain stem, another November 2008 which had 2 more - so progressing quite slowly although done with no contrast and only the brain this time (strange guy my neuro)

LP : not done - Neuro adviced to only have it done if I needed to claim on insurance for my mortgage (told you he was strange)

How many Neuros so far: just this one but that has to change soon as he has not offered to follow up, monitor or anything else.

Quix : What a great post it's good to read others stories too.

Will get the journal filled in asap.

[uk2]

current DX fibromyalgia in 2008 jan- dr says prob had for 10 yrs according to sx

MRI head and spine clear 2 years ago

LP clear 2 years ago

attacks - many different from fibro hence why seeking another neuro as new attacks and old ones back

vertigo/blurred vision/all over body spasms 5 attacks in 2 years lasting up to 3weeks. tight band round ribs cant breath 3 attacks in 6 years. off balance. right sided weakness progressively worst over 2 years. right sided numbness in face on and off. feel ill after sun and hot baths or hydrotherapy.

Went to ER as you call it in America A&E here after serve vertigo and loss of vision feb 2009 he done full neuro work up noticed i had hyper brisk reflexes where they have been normal in past and new numbness patches so wrote to my GP and told her to refer me back to a neuro she wanted me to go to the same one i said no way he was a jerk and a text book neuro i want some one who is going to look out of the box and find whats wrong waiting for urgent appointment to neuro in london.

sam

[rendean]

History of distinct attacks? Yes
MRI lesions;  Yes -but disagreement as to their signficance
LP : Negative
How many Neuros so far: Just started with #3 at academic hospital who seems to be doing it the "right" way by going down the list of mimics and ruling them all in or out

Rendean

[Trace420]

History of distinct attacks: Yes
MRI: Will have first one Monday
LP: Haven't had one
# Neuros: Will make first appointment with one after discussing MRI results with my GP

[Sarahsmom46]

History of distinct attacks: Yes
MRI: Brain lesions, Suspected spinal lesions - March 10th MRI to confirm
LP: May 08 - 2 bands; Feb 09 - Still waiting on results.
# Neuros: 3
Duration of symptoms - 10 months (possibly longer)

- Julie

[Guitar_grrrl]

Hx Distinct attacks: 2- 9/2005 (2 weeks); current has been ongoing for 1 year.
MRI: Basically nl.  Lots of white spots on the brain that don't light up w/ Gd.  T-Spine WNL.
LP: Not done yet.
Lower Extremity EP: Nl.
# Neuros: One. Abnormal neuro exam w/ positive Babinskis bilaterally, hyperreflexia, 60% decrease in sensation from top of knees (lower quadriceps) to toes.  

[ashleyPT]

History of distinct attacks? Yes - for 3 years and never fully recover with each.  2006 with L foot drop and numbness.  2007 with L leg weakness entire leg and abnormal R pupil reflexes.  2008 loss of temp and pain sensation L leg, right facial numbness, spasms left foot, left arm weakness, double vision.

MRI lesions;  No

LP : Negative

Evoked potentials: Abnormal

How many Neuros so far: 5, but mostly because I've lived in 3 different cities in the past 3 years.  

MS has been on the table since 2007, but one neuro thinks that with my age and symptoms it's the most likely option - but the puzzle isn't fitting for them without MRI lesions.  Right now she suggests regular MRIs.

[bearsmum]

History of distinct attacks? Yes/ No  -  TIA's & epilepsy & MS related flare ups
MRI lesions;  Yes/No  -  Lesions yes but not MS lesions
LP : Positive/Negative - don't know
How many Neuros so far: # 3  - 1st neuro first thought accoustic neuroma but came back negative but did diagnose me with Epilepsy.  2nd neuro said to go home and learn to live with it.  3rd & current has just confirmed that I have Mitochondrial Cytopathy, waiting for the 6th March to have a muscle biopsy done to confirm which version of it that I have.

bearsmum

[calliegage]

History of attacks, many over many years, but did not know what was causing them.  Thought to be caused by ASD or migranes.

Abnormal neuro exam

MRI, multiple abnormal areas

LP, having in a week

Neuro consult, only one as I just started this process in Dec.

[HVAC]

History of distinct attacks?  No I don't think so
MRI lesions;  Yes on multiple MRIs but some went away
LP : never had one
How many Neuros so far: # 3, 1st said MS then sent me to next Neuro, who said no way MS, 3rd could not be anything but MS, whatever that means, but told me to follow up in six months.

It has been sixteen months and no diagnosis. I hope not MS

[Alli78]

HX of attacks:  yes  7/08 numbness, tingling in all extremities and left side of face and tongue, as well as weakness in legs, and mind numbing fatigue.  Improved in November and December and hit again in 1/09, with tinnitus and intermittent hearing loss added.  Hyperactive reflexes.

MRI:  7/08 No lesions on brain or cervical spine, LP and VEP: negative
New MRI on 2/13/09 included thoracic spine, going to get results tomorrow 2/16/09

Neuros: 2, going back to #1 after my second opinion said its probably a virus and prescribed me Provigil for fatigue.

Neuro #1 is convinced it's MS despite, the previous negative MRI, will see what happens tomorrow.

Exhausted,

Alli

[fibrotj]

History of distinct attacks? Yes
MRI lesions;  No
LP : Have never had one
How many Neuros so far: #3

I've had Fibromyalgia the better part of my life, and it's grown worse with age.  However, 2 years ago, I began having classic MS symptoms.  I was overwhelmed with so many symptoms at once.  Parts of me kept going numb, tingling everywhere, pins-&-needles, horrible balance, nausea, buzzing/vibrating & burning sensations, severe spasticity, muscle spasms, severe cognitive/memory & speech/language problems, etc...  

I can name 3 previous 'severe' flare-ups since that date (including that one) and have been in my 4th, since my latest move to Montana...about 6 months ago.   Started out with severe anxiety attacks 24/7, then after they finally subsided (think my new Rx of Cymbalta has helped), I began having numbness in my legs, arms, hands, feet, & chin, buzzing/vibrating sensations, burning sensations, severe muscle spasms, spasticity is worse, and eye problems (vision going blurry off-&-on).  

New optometrist last week, said he thought I was getting glaucoma...as my tests revealed high intra-occular pressure, moderate tissue build-up on the back of the eye, & "notching" on the head rim of my right-eye optic nerve.  I was worried about optic neuritis, and have been advised by other MS’ers to see an ophthalmologist.  So, I know that this is all beyond Fibro.  I'm still susupecting either CNS Lupus or MS.  Although my first set of MRI's were clear, they were also done on an "open unit"...machine with just a big magnetic ring you pass through.  These aren't nearly as powerful or accurate as the "closed units" (tube-like enclosure), and aren't recommended for picking up brain lesions.  I have no idea why my 1st Neuro used this kind.  So, I would like to have them repeated, but will wait and see what my new Rheumatologist says....as my last round of doctors back in Oklahoma thought it was Lupus (ENT, Neuro, & Pain Specialist).   ~tj

[meg321]

History of distinct attacks?   I am not sure about a 'distinct' attack because i amnot even sure what that is.

MRI lesions;  Yes

LP : Had one 2 weeks ago, no resuts yet

How many Neuros so far: # 1..have just gone to MS specialist at UCSF

[Jason732]

History of distinct attacks? Yes. 1st in 2/08, 2nd in 11/08, 3rd now (1/09)
MRI lesions;  Yes. 1st in C3/C4, 2nd in T6, 3rd pending.
LP : Positive for oligoclonal bands (9, IIRC) IgG index 20.2
How many Neuros so far: 2

[Harathy]

history of attacks yes
mri clean
still getting tested
4 drs believe its ms

[Harathy]

oops i meant sspect along with something  else hence all the testing which is making me crazy

[Hope75]

I have thought that MS was ruled out in the past, but here we go again with symptoms.  So count me in on the limbo landers.


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

[bellalee]

History of Attacks - probably one very long one (May 08 to Nov 08) Now seem to be ok

MRI: 2 Mri's. Both show 9 tiny hyperintensities - no evidence of demylination though. Strange!

LP - Negative

Number of Neuro's: #2

[Quixotic1]

Anyone else?

[sheznolady]

History of distinct attacks? No
MRI lesions;  Numerous lesions in centrum semiovale
LP : Pending results (procedure 3/13)
How many Neuros so far: 5

[Ufrustrated2]

I would say I am a Limbolander. After 22 years the VA has at least, recently, put down "unspecified demyelinating disease". Waiting on VEP.

History of distinct attacks? Yes
MRI lesions;  Yes
LP : Positive
How many Neuros so far: 5

[skarey]

I am still waiting for a dx.   I've been told it is not MS, however I'm still keeping it as a possibility until they dx me with something else.  I'm currently seeing a rheum.  who has is testing me for autoimmune diseases and Lymes.  

History of distinct attacks?  Yes.. 2.  One in May of 07 that lasted about 4-5 months.  Was good until now.  Having 2nd attack....  Numbness in left leg, foot and toes, tingling arms and hands, twitching, occasional pain (widespread--arms, legs,feet, ears, eyes,hands) brain fog, occasional weakness, fatigue, and dizziness.  All these sx come and go from day to day (even hour to hour).  One day I'll feel half normal and then the next feel horrible.  I've been told my sx sound more Lymes Disease than MS, but I still consider to me in LIMBOLAND.

MRI lesions:   NO.  I've had 2 sets of MRI's.  The first one was a brain w/wo contrast in May 07- NORMAL.   Just had a Brain and Cspine w/wo contrast -NORMAL

LP-NOT DONE
HOW MANY NEUROS?  2 SO FAR.  I'M THINKING OF GETTING ANOTHER OPINION THOUGH.  

[student01]

History of distinct attacks? Yes

MRI lesions;  Yes

LP : have not had one yet

How many Neuros so far: # going to my 2nd one on 4/1/09


Lynn

[summerluvr]

History of attacks:  

Yes clearly. Off and On for two years. vague at first, now more intense. I felt pretty good from January until the February then bam.  Just getting over one that started at the end of February where all symptoms came one after other (started with fatigue, then bladder retention got very bad, then I dragged my leg around for a few weeks, now my hand is very tremulous, and my vision has been very foggy, worse then usual, but my vision hasn't been "normal" for almost two years)

MRI:  Normal Spring 2008, just had another MRI two weeks ago, don't know the result.

LP: not had one

How many Dr's:  

3 ophthalmologists, 1 ENT, 1 Urologist -> referred me to 2nd Neuro

1st neuro September 2008 - told me my hand  tremor was benign tremor and didn't ask about my other health. I told him I had vertigo he said who told you you had that.  I now know the exam was abnormal.  Hyper reflexes, poor heel to shin, and poor fingers to thumb on right side. He pricke my right hand and I could not feel it on my index finger. He told me he had no explanation. And was I making it up?

2nd neuro - waiting for appointment, things take a while up here, I'm in Toronto Canada, so wait times can be 4-6 months.

[Quixotic1]

Bump for adding new memebers without a diagnosis of anything.

[Tammy826]

I've had 3  neurologists so far 1Mri(showed lesions) & am now going to new family practioneer that I am praying will find the answers heres my  have been searching for answers for almost 3 years now, & don't seem to be able to find any. I'm guessing my lack of health insurance is the reason. I started out with extreme fatigue & weakness, I had an MRI (showed lesions on my brain), vitamin B levels are normal, test done were they shocked my legs(it was normal) & was told I had probable MS, then told that no, I didn't have MS. This was a year ago that these test were done. Now I have started seeing a new family practioner, who performed some neurological exams in his office(I couldn't stand with my feet together & my eyes closed, I fall over), I couldn,t smile on one side of my face, He had me to stick my tongue out & I could move it to the left but not the right,I can't walk with one foot in front of the other, so he concluded that somethng neurological is going on. I came to this Doctor after seeing a neurologist (who was very rude & would not let me talk what so ever), She told me nothing was neurologically wrong with me & didn't do any of the tests the new family practioner had done. So I'm very frustrated & confused. Whatever this is has started to ruin my life , as I was a very active person before. Sometimes its like someone fips a switch & I feel better, sometimes for a month or more. Then here it is again & it always brings new symptoms with it. I can"t walk at times & when I can then not very far( my legs get very weak & tremble), the fatigue is horrible, I have tremors & now my muscles randomly twitch, my right eye feels like someone sticks a knife in it & I'm very light sensitive(wear sunglasses in the house) , plus it hurts when I move my eyes, my legs & arms feel like someone tied concrete blocks to them, I have decreased sensations in my hands & feet (like I'm wearing gloves), & as if that weren't enough now I feel like waves of electricity run through me. I have had my husband come to watch my muscles twitch , just to prove to myself that I'm not competely crazy.Now I';m worried about my brain function as I forget things alot more & seem to lose my train of thought often. Does anyone have any answers, I just want my life back!! The only tests have had were a year ago & the ones I mentioned earlier. I was told the reflexes in my feet were not right (babinski i think) but not sure of anything else, I saw an opthamologist, & she couldn't explain what was going on with my eye. Whatever this is sometimes goes away & I start to feel somewhat better but it seems to always come back & bring some weird new symptom with it. If anyone has any suggestions as to what to do or where to go, or even what kind of Doctor to see please let me know!! I would so appreciate it!! Thank You, Tammy

[Heartshome]

History of distinct attacks:  Yes
MRI lesions:  No
LP: Not done  
Neuros:  2

Hyperactive reflexes with ankle clonus. Livido R. in arms and legs. All other differnetials have been eliminated. Dr. suspects MS, but thinks it's very slow to show itself. Watchful waiting.

[Weakandfalling]

Quixotic 1:  Excellent suggestion!  You're terrific!!

I'm new and I haven't done my profile yet.  Yes, I'm in limbo land.  Been there for over 5 years!!  Have been ruled out for essentially everything!!  Every blood condition, every disease causing extreme weakness and fatigue known to man or womankind!!  Thought I had ALS,  thought I had Parkinson, thought I had MS!!  I still think it's MS because heat affects my walking ability and balance.  Positive Romberg, but was told I'm too "old" (early 60s) for it to be MS but then I read in the MSAA quarterly publication recently about a woman in her 70s who was finally diagnosed with MS after 40 years of symptoms!!  In response to your questions:

History of distinct attacks? Yes - arm and facial numbness, blurred vision, speech and swallowing issues, weakness, fatigue, weird sensations like bugs crawling on skin or buzzing, spaciness, nystagmus (starting in childhood), balance issues, falling, muscle spasms, hand clawing etc.
MRI lesions;  No  - Only a brain MRI on 1.0 Tesla.  
LP : Negative (worst experience of life - like live current running down my right leg - - throwing up for a week - required eventual blood patch).  Next time I went to that lab for tests, technician says to another technician:  "Oh what are these stickers for?"  Turns out they were labels for my spinal fluid:  No telling what they really did with it.  
How many Neuros so far: # 4 and counting.  
Worst Problem:  My unreal, extreme fatigue:  Use Provigil when I can.  Don't feel I have enough energy to really live.  Must nap!!

[JJJ77]

History of distinct attacks? One starting in November 2008 and still don't think it is done!!!
MRI lesions;  Yes, C4-5 but none on Brain MRI
LP : Not Performed
How many Neuros so far: 2

Diagnosed with CIS of Partial Transverse Myelitis.  Next MRI August...not sure what to think!

[cassrox]

History of distinct attacks? Yes

MRI lesions;  Some "white spots" first neuro dismissed and didn't even tell me about. Done on a 1.5 Tesla open machine; spinal MRI done on the same with no contrast.

LP :Stil haven't had one. First neuro stopped testing when he reported that my MRI was "normal."

How many Neuros so far: I'm going to see a second one Wednesday, at the Medical College of Georgia in Augusta, and I sure hope I have a better experience. Basically the first neuro recently threw me under the bus. Since last June, I've had three major attacks, each leaving me worse off after they subsided, but he just dismisses my symptoms.

I battle with numbness in my limbs, especially on the right side, have had boughts of severe eye pain and blurry vision, extreme fatigue, heat sensitivity, pain in my legs and feet along with the numbess and weakness, and bladder incontenence. Sometimes I can barely walk, and when my right leg goes numb, driving is really difficult. During those major episodes, I've also had trouble swallowing, and my speech is stuttery.

I've also battled for five years with this awful pain/pressure in my right side. They even took my gallbladder out, but that didn't make it go away. A gastro told me last week he thinks it may be neurological.

He and my primary think I'm a well-adjusted person, who is alert duirng my visits, but that insensitive neuro I was seeing quickly chalked up all my troubles to "stress," or some phycological problem. Sure, I've been distressed when I can't see good, can't swallow, everything is going numb...It's my health that's causing the stress, not vice versa. That guy was a total jerk.

My primary is sending me to Augusta, thank goodness!

[rudyhorse]

ok sorry so late.  Limbo land for sure here!
Over the years, more than 20, I have seen a lot of Dr so I am going with current.
20 years ago I had an issue with my right leg among Liver auto immune issues--clean/normal MRI.  Yes on history of attacks.
Now 2005 on--- 4 neuro's --some sleep specialist.  2005 an MRI with white spots they said were caused by Migraines.  Current MRI 2009 no spots/lession, a line of injury that was not seen before.  
Neuro can not say for sure what is causing my imbalance, will not rule out Parkinson's (that is what he said today)  However, nothing we can do right now.

[Military_Wifey]

History of distinct attacks?      maybe---had symptoms since 2004 but was attributed to shoulder problems, flat feet,migraines, kidney stones ......Pain doctor now thinks may have all been MS attacks.

MRI lesions; brain- Yes, many;;including as big as 1cm and has locations classic  for    MS              spine-not done yet

LP : not done yet

How many Neuros so far:    1st one sees me on Wed. 22nd, luckily is MS specialist.

[CheeserNurse]

History of distinct attacks? Yes---the first symptoms I 'really' started to experience was in October 2008, maybe even September...then felt fine up until February of this year, and go a few weeks without feeling symptoms, them they creep back up on me again. I can remember having the 'electrical shock' feelings ever since I can remember, but all the balance and vertigo issues were more profound this year.

MRI lesions;  Yes--4 and the spots of demyelination

LP : Have not yet had one done...my former neuro. didn't think it was 'necessary'

How many Neuros so far: 1 and still looking for a better neuro...waiting until my parents get their insurance back.

[PastorDan]

I posted here in mid-February, so if you're using this to count something, don't count me twice.  The main thing changed here is the number of doctors, and their opinions.

History of distinct attacks/remissions? Not certain, but sounds like it.

MRI lesions;  Four for sure, and some other iffy spots.

LP : Haven't had the pleasure to date.

How many Neuros so far: Fired one, second (MS specialist, expert even) referred me to third (general neuro) who is referring me to 4th (neuro-psych).

Has MS been considered? 1st neuro dismissed it out of hand, before any testing.  Other two have been somewhat skeptical.  Latest theory is migraine, with which I am having trouble making a mental match-up.  I had several in 1997, then one in February this year, all classic migraine with aura.  The rest of this doesn't feel like that.  I've learned I have a hormone deficiency, which we hope we'll begin to address later this week when I see an endocrinologist.

[toadaleh]

Nearly 18 months stuck here in limboland...
History of distinct attacks? Yes
MRI lesions;  No, but I've only had a cranial, not a spinal.
LP : Still waiting for results
How many Neuros so far: 2

[Noelwolf]

History of distinct attacks? yes one started in December, still having issue
MRI lesions;  7 in brain none on Cspine
LP : Negative but increase lymocyctes
How many Neuros so far: 3 going to MS specialist in July.

dx with smokers brain, I was told i had viral mengaitis, I never was sick with a cold, one doctor said probably MS, but can not dx it.

Left side numbness, burning sensatiow down spine and in legs and arms, headaches, blurred vision in right eye with eye pain sometimes, headaches, sometime tightness around my middle section.

[shelleyannjohnson]

1 Attack, April 2008
Mri lesions: 1 large lesion, numersous microlesions
LP: positive with 12 o bands
Neros: I have seen 2 different in one year

[tiffany515]

History of attacks: YES

Lesions on mri: yes

LP: neg

neuros: two....one says ms, the other says no way......what's a girl to do??

[Brian202]

History of distinct attacks: Sort of...

My only real "distinct attack" was Uveitis in 2006. Bladder problems developed slowly over the past year. Since March of this year I have had balance issues, paresthesias throughout body and numbness in hands.

Lesions on MRI: No. I had brain, c spine and l spine all negative

LP: Getting it done this week

Neuros: One...he has been very helpful in getting the testing done immediately.

[Quixotic1]

all the new people without a diagnosis, please post your info.

Quix

[steph74]

History of distinct attacks? Yes
MRI lesions;  No
LP : Negative in 2002
How many Neuros so far: 3 for the first "attack" in 2002 then stopped looking for many years, ignored the sx along the way.  Bilateral trigeminal neuralgia sent me back to an MS specialist this year (new city).  So, 4 total, not counting the neuro I saw for migraines and the neurosurgeons (2).

Brief hx:
First episode after birth of 2nd child.  Sx were primarily sensory, with severe fatigue and some *slight* weakness.  Eventually resolved and I figured I could live with what remained.  Some reflexes were abnormal (+3 and +4), not much else notable on exam.

Over the years several funny things happened:  

Squeezing chest pain lasting for several weeks sent me to the ER where they said "inflamed cartiledge" -- MS hug?

Lung function tests came back normal except showing : "reduced neuro-muscular control OR subject not trying" (I WAS trying!!)

Then this past winter (2009) I got a killer headache that wouldn't quit.  Nothing could get rid of it.  I felt like I was repeatedly getting punched in the jaw, or hitting the back of my head on cement.  This eventually became a clear case of trigeminal neuralgia (I was 34 at the time, so don't fit the general profile for TN).  

With the additional sx of muscle spasms, incoordination and weakness in my left arm, worse parasthesias, etc., I found another MS specialist.  She found clear signs of damage to my cerebellum, pons, c-spine, and something else I'm forgetting.  (Did I mention my memory ***** these days???)  She said, "It looks, sounds, smells, and tastes like MS, but your MRI is clear."  So no dx.  Sent me for neuro-cognitive testing (awaiting those results) and to a neurosurgeon to rule out vascular causes of the TN.

When my leg got very weak and I was having trouble walking and balancing, I had a three day course of solumedrol.  I am slowly feeling better, but coming off of it was AWFUL!  I was in so much pain.

I saw the neurosurgeon today.  He said it would be exceedingly rare for someone my age to have bilateral TN with a cause other than MS.  He agreed that it looks and sounds like MS.  He said next time I have a brain MRI, make sure they do a CISS protocol to visualize the blood vessels.  Right now the pain is being managed with drugs, so I wouldn't consider a surgical option anyway, so we can definitely wait on the MRI.

So, that's where it stands.  Everyone thinks it's MS, but I can't be treated because the MRI doesn't show lesions.  I guess I just watch my body fail with nothing to do to slow it down.  (I'm in a lousy mood today...)

Stephanie

[Becky559]

History of attacks: Three episodes of optic neuritis in one year.
Lesion: none that I know of: seeing doctor June 1 09 for reading of this MRI that was done specifically for  the optic nerve.
LP: No, not yet
Neuros: I have one for my other problems,,,back surgery/sciatic and etc. but not been seen for specifically this YET

[limbomom]

History of distinct attacks?  Not sure, just a gradual worsening of symptoms
MRI lesions;  Yes
LP : Not yet
How many Neuros so far:  My first visit is tomorrow.  I'm really nervous

[Karen99]

History of distinct attacks? Yes - none since 2001
MRI lesions;  Yes  
LP : Negative
How many Neuros so far: Took just one to diagnose.

[6-paq]

Been in Limboland for 2.5 years...


History of distinct attacks/remissions?:   No  ~ sx just began here and there and have stuck around (constant headache, occasional dizziness, tinglingbuzzing on bottom of both feet, down outside and inner side of calf, left hip, inner left thigh)


MRI lesions:  Yes ~ 1 large lesion next to ventricle  02/2007;  
Stable brain MRI in 04/2008;
Stable brain MRI in 04/2009;
C-spine clear in 02/2007  ~ neuro hasn't repeated spine MRI as no new sx have appeared since initial spinal MRI
Lumbar spine ~ scoliosis and moderate central canal stenosis in L4-L5, L5-S1.  

LP:    Negative ~ no elevated protein; no O-bands
Neuro ordered an LP first thing after abnormal brain MRI in 02/2007


VEP/SSEP/BSEP:   All normal
  

Neuro exams:  Normal


VNG:  Vestibular loss in right ear as per caloric test, no CNS abnormalites noted.  06/2007


How many Neuros so far: #  Just 1.   My neuro has been following me closely.


Has MS been considered? My neuro suspected MS the minute we looked over my brain MRI in 02/2007.    He has had me listed as "possible MS" ever since.   I went to him due to a constant "sinus" headache and occasional dizziness, some tingling on the bottom of my feet.   He ordered the brain MRI and my rollercoaster ride began....

[samandsprout]

History of distinct attacks? Not really...symptoms just come and go randomly, but nothing measurable sticks around for the required 48 hours.  I have also had 2 pregnancies, and symptoms definitely go into remission during pregnancy and return postpartum, but nothing "attack"-like.  Main symptoms are sensory (tingling and numb patches), some occasional hazy vision, brain fog, vertigo twice, possible urinary & swallowing issues, used to have bad one-sided headaches.

MRI lesions:  Yes.  I have had 3 brain MRI's in 2003, 2007, and 2009.  They all show the same multiple lesions with no new lesions.  They are apparently not typical MS lesions, but 2 of them may be enlarging, according to the report (posted in my journal).  I also posted a few of my slides from the 3 different years in my profile.  
I have a negative cervical spine MRI, but it was done on a 1.5T machine.

LP - Negative
VEP - 2 negatives
PFO - negative
All blood work - negative
Neuro exam - normal

How many Neuros so far: 1, but I have been approved for a 2nd opinion referral at UCLA

[Phoenix177]

History of distinct attacks/remissions? Yes, I think so with hind sight. I'm currently having ON sx, tingling, electrical type pain on and off. R forearm has been mostly numb since 3/09
MRI lesions;  No, taken 7-9 yrs ago
LP : Negative 7 years ago

I'm waiting for results for NCVT (June 10)

[fdmh]

1. Yes, I would say 2 attacks, but according to neuro they don't last longer than 24 so likely are not real attacks.
2. 7-8 lesions in periventricular white matter and subcortical u fibers, 2-4 mm in size.  Brain MRI on 3T scanner.  That was radiology report.  Neuro #1 said she was "unimpressed".  No spinal MRI's done.  Next follow upr MRI due July or August
3.  No LP.
4. Neuros-going on number 2 who is a MS specialist.  #1 left the corporation and referred me to number 2.  I see her in September. Until then just keeping track of s.  
5. Negative EMG on left hand, I think I also saw a neuroopthamologist, nrml visual field exam.  
6. Neuro exam essentially normal.
Grandfather had MS.  Also dx in the past year with Hashimoto thyroiditis, an autoimmune disease in addition to the hypothyroid I've been since birth.  Asx for this, on meds.

[sg40]

History of distinct attacks: Yes (2)
MRI Lesions: Yes
LP: Negative
# of Neuros: On #2

D

[Jewls2701]

History of distinct attacks? Yes
MRI lesions;  Yes
LP : Having one in July
How many Neuros so far: # 2

[artspaz]

History of distinct attacks? Yes, in the last year every 5 weeks and since April none stop
MRI lesions;  None on my brain but maybe on my spine. My neurologist saw something faint and I need to get tested again in August.
LP : I haven't had one yet
How many Neuros so far: # 2 Second one claims to be an MS specialist

[Quixotic1]

bump

[supermum_ms]

History of distinct attacks: Yes!!!
(fatigue & sensory sx go back to mid 20s, 2nd childs birth collapsed-fatigue-rib cramps- tremor etc age 34 undx, first BIG attack age 39 lost the ability to walk undx, distinct big attacks every year with accumilating sx 6yrs undx, 2008 bad year undx, 2009 worst yet April - August undx)

MRI Lesions: Yes
(1.5T, no contrast, no MS protocol, "Not enough inflamation (inflammation) showing up in the white matter for MS", only 1 large lesion lit up in the periventricular area, 2 other areas showed some desimalymation but everything deemed "irrelevant")

Clinical signs of neurological problems: Yes

LP: Not going to go through anything invasive yet, not pushing my luck on it going wrong.

How many neuro's so far: 1, i call him Twit! (epilepsy specialist) Neuro i was refered to.

When the MRI didnt show the lesion load he expected he dismissed everything even when his own brief clinical exam showed neurological problems. He decided it was "psychological" which I have since been evaluated for and thankfully have a squeeky clean mental health status. I have always been an optimistic, easy going person, only one short bout of depression after my 20 year marrage ended which IMHO is understandable.

"Senile dementia" was the other explansion he gave for my 'episodic events' what?? since when did dementia become 'episodic' or cause 'episodic' physcial, sensory, visual, fatigue, bladder & bowel, tremors (Ess,Post,Int) temperary lexical losses, stuttering & slurred speach, vertigo etc etc for weeks or months? I actaully think its illogical to think this could be dementia my episodes appear, then disapear, then come back worse, then disapear [repeat] as I said what??

MS society of Australia adviced me to seek a second oppinion with a neurologist at my local MS clinic. My next big attack will get me to neurologist number 2 at the MS clinic.

Cheers......JJ

Doing the limbo! :)

[Qwyietman]

History of distinct attacks?  Looking back, I think so, but lately stuff just seems to pile up.  I suppose I'm just hosed!
MRI lesions:  No (Brain MRI only)
LP : Not Done
How many Neuros so far: 2

[diemyn]

History of distinct attacks? Yes
MRI lesions; don't know yet
LP : don't know yet
How many Neuros so far: I had one visit with one neuro 2 years ago and was poked and prodded with little interest, then lost my coverage and didn't go back to him. The most interesting thing that came out of that apt was that some thing that he was looking for in my eye could not be found, which he'd never encountered before, but took it as just an anomaly since I could see out the eye still.

[vicmid1]

History of distinct attacks? YES!!!! For 3 years
MRI lesions;  No - 1 x low res MRI no contrast - waiting for 2nd
LP : haven't had one yet
How many Neuros so far: 1 x MS specialist

[Valerie64]

History of distinct attacks? Yes
MRI lesions;  Yes - 1cm one in frontal lobe
LP : not yet,
How many Neuros so far: # 1, see him again January for further tests....

Val

[amos13]

History of distinct attacks:  don't think so, symptoms started May 2009
MRI lesions:  yes, brain
LP: Not done  
Neuros:  1, seeing 2nd one Oct. 21st!

[PastorDan]

Gee, this has been a while.  Wonder what I can remember today.

Distinct attacks?  Somewhat.  Big vertigo problem July 2008.  Returned with a vengeance October 2008, & never went away, then visual disturbance became evident sometime in November.

Lesions: January 2009 MRI brain, 1.5T, w/wo contrast, showed "four punctate to small T2 hyperintensities in the deep and subcortical white matter" if I remember their wording correctly.

LP: Scheduled for October 20th, along with Lyme test.

Neuros: I'm on #4; so far he's the best of the bunch, but that's not necessarily saying much.  #s 1 & 3 should have their licenses revoked.  #2 should stick with his research work & let those interested in helping patients do so.  #4 does have a good reputation with several folks from whom I've heard.

[fdmh]

Hx of attacks-at least 2, according to neuro don't last long enough
MRI lesions-yes, 4 to several, depending on who you ask, in periventricular white matter.  All visible on 2 different brain MRI's, cervical spine was visible on first that was clear.  
LP-haven't had, neuro said he still wouldn't dx or treat at this time so he defers for now.  
Neuro's-2.  Second is MS and I really like him.  He's currently blaming on my thryoid but close observation.  My thryoid labs have been normal for months.  

[wadeheather]

History of attacks - I think so???
MRI - clean - with headache protocol. At least I don't have an aneurism!
LP - haven't had one.
Neuros - Now on #3 (#4 if you count the headache specialist - but I don't.) He's calling it migraine.  I just don't buy it - still....

Not sure how long I can handle this limbo journey.
Heather

[bambi61]

History of Attacks-At least  probably more that were not diagnosed
MRI-increasing lesions over last 8 years
LP- twice, both clear
Neuros-3 getting ready for #4. Most just think it is my fibro, last one told me to be glad it I didn't have a tumor. I do have a pineal cyst which everyone seems to write off as nothing to worry about, has anyone else been diagnosed on their MRI with a pineal cyst?

[madison130]

Don't know if you want those of us who are dx to post, but here goes =))

History of Attacks:  currently, 7 weeks in.  =((
MRI:  14 white matter lesions in my brain, several lesions on my c-spine, including 1 rather large one that, as my neuro describes it, is practically "capping" my spinal cord.
LP:  Positive--Elevated Proteins, 9 O-bands.
Neuros:  Luckily, I've only had one, and am sticking with him.  He's wonderful =))

[PastorDan]

FYI, there's another thread right near this one for those with a dx of MS, asking different questions.  Personally, I'm happy to hear your story in this thread, but you asked.  I doubt that anyone here objects.

[Louby70]

History of distinct attacks? Yes, Last one being only about 8 weeks ago when I had really painfull muscle spasms inner thighs, private, back going up my right side of back could not hardly walk,  this seemed to set off my right forearm, which has started with muscle pain & more weakness, the other in May 09, head went very fuzzzy felt I was going to collaspe, had very bad pressure feeling in my head which made my balance poor, I kepted toppling over.

MRI lesions;  Yes

LP : Not Had This Test Done

How many Neuros so far: I seen 1 Neuro through the balance clinic for about 20mins.

[GOMER2]

History YES

MRI lesions, multiple bilateral deep white matter ALL in favored areas of MS, none elsewehre, per brain MRI

LP nope

EEG at age 13/14 (50 yrs ago) specific results unknown

Neuros ONE he has been fired so NONE for now

Hearing loss, diplopia (double vision) since 1964, vestibular a mess, eye test tracking etc all bad, Gumby stix for legs, wearing AFOs for 2 years for weak muscles (muscle atrophy but no MD), patial hand numbness, eye twitches, finger twitches and spasims and various other things. Losg list of Sx, NO DX yet?????

GOMER barely mobile via GumbyStix

[Weakandfalling]

Quix and MSers/Limbolanders,

My response somehow ended up in the "diagnosed" column even though before typing it I know I had clicked on the "undiagnosed" column.  So look under "diagnosed" to see my current data.  Maybe it was meant to be - a sign of things to come!!

Anyway, I'm excited because today I'm going for my spine MRIs (cervical & thoracic) and am pretty sure something will show up on them (due to my weakness, mega-spasticity of legs, and MS hug symptoms).  I've read everything the Quix has written on the spine MRI versus symptoms and, hey, that's me!!  

I had a dream last night that spinal MS lesions did show up on my MRI films and as I was looking at them, they moved - because they were really just white bugs on the film!!  Ha, ha!  But then the radiologist told me (in my dream) that I did, in fact, have MS spinal lesions.

More later.

WAF (storming the gates of Limboland)

[lowchen]

History of distinct attacks? Yes
MRI lesions;  Yes
LP : Negative
How many Neuros so far: 4, with 5 next week

Symptoms began 28 years ago, increased 6 years ago, in January developed difficulty walking and standing. Now use cane for more than few feet. Cannot stand for more than a few minutes. Facial pain >50% of time. Pain in legs. Spasticity in legs and abdominal area constant. Still no real dx.

[maartu]

History of distinct attacks? Yes
MRI lesions;  Yes; 2 lesions, 1 large on right side and 1 small on left side. I have no ideal on long they have been there! They were not present in 1980.
LP : Positive/Negative   Protein level is normal but not sure meaning of "LP."
How many Neuros so far: #

1st Neuro appointment in 1980

2nd Neuro appointment August 2009 currently seeing Neurologist to determine diagnosis. Thirty years later!

[Ovieloverinla]

History of distinct attacks? Yes

MRI lesions: Yes

LP: Negative

One neuro, need to start looking into a second opinion

I have been diagnosed with MS, then Probable MS, then "really dont know what's wrong" with you"..ugh!

[jewls13]

History of distinct attacks?  possibly, if I have than it has not gone away. Have had symptoms for 7 months

MRI lesions;  Yes, I have one lesion in thalamus. Second MRI shows that it has gotto larger. Have had two MRI's
LP : Negative
How many Neuros so far: # 2, looking for another. Doctor told me to wait and see what happens next!

[Bob368]

History of distinct attacks: Yes

MRI lesions: Yes

LP: No, but increased activity

How many neuros so far: 3

[cyndi25]

History of distinct attacks? Yes
MRI lesions;  Yes -5yrs ago,  waiting to be scheduled for another before nxt appt
LP : not had as of yet
How many Neuros so far: I have a appt with my 2nd this month. 1st was treating me
for migrains.  PCP recommended I see new Neuro, far too many sx for migrains.

Cyndi

[bumblebizto]

A) history of attacks: well back in April and May  once a day 09 my eyes would get hazy vision for like 3 seconds until I blinked ... that happened for about a month and went away. In June I had a 4 dAY  period when my rear thighs would occasionally  feel "burney" and get pins and needle-like. The only symptom that has persisted was the mild burny thighs, but that went away last month. Oh, and there have been breif episodes of numb hands and buttock for a few minutes at a time. Apart from that I have not had any (yet) "showstopping" issues, like foot drop, falling, blindness, or some of the heavy things I've read here in the boards. Would these qualify as "distinct attacks"?

2) MRI test:  none so far

three) LP: none

V)  doctors: my GP who is pretty good, my optom who is good as well, and I saw a Neuro last month and remarked that I had no abnormal results (neg Babinski, Lhermnitte, reflexes good, closed-eyes standing no prob etc).

I am worried that the sensations of warmth my rear thighs (here and there throughtout the day, coming and going ev'ry few days) occured during the hot portions of the summer (June, July, Aug) and what that may indicate. Also I've develolped strong hunger crashes around 10 AM after "breffix" and b4 lunch, so for a couple of months now I've been reliant on tweener meals to keep my stomach from growling and me getting lightheaded.

Male, 30.. I have no idea where this is all going, so of course I fear the worst. :(

[FrankieT]

Symptoms for over 10 years, just didn't realize they were anything to be concerned over.

History of distinct attacks? Yes - about every 90 days lasting for a week or two then dwindles to no symptoms until I think it's all an allusion until the next time. More severe symptoms over the last two years.

MRI lesions;  (1) 1.5 brain MRI - negative

LP : Positive/Negative - N/A - have not had one

How many Neuros so far: # 1 of which I saw for about 20 seconds. I worked with his PA. the neuro didn't even put both feet in the room when talking to me.

Status: working the insurance game to get a second opinion from an MS specialist. Consultation scheduled in November. Been working on this since early July.

[mistylee]

History of distinct attacks : yes 3 so far in 31/2 years lasting 4months, 2 weeks  
                                        and 2months .

MRI lesions   :16 plus brain

L/P               : none done. Was suggested by neuro but I'm resisting.

How many neuros so far  #1 neuro seen after first attack .Called it CIS .#2 neuro for second opinion said ME. #3neuro same as #1 now says possible MS.

Just had 3rd MRI done on brain and spine. No changes. Biggest lesion 4 mm . In subcortical white matter. Atypical areas for MS causing lack of dx. Neuro wanting to see changes.

[AmishErin]

Distinct Attacks: Yes several over maybe a 2 yr period Including (that I can remember right now) mild cognitive and memory difficulties tremors,numbness, tingling,  fatigue, clumsiness, slurred speech, swallowing difficulties, bladder woes, Optic Neuritis, strength loss and foot drop

MRI Lesions: 16 at last count

LP: not performed

# of neuros: 2... had to change for insurance purposes... my first neuro was a headache/seizure  specialist

my 2nd I met  at a dinner thingy called Meet The Neurologist and paid for by Rebif.  He specializes in sleep studies and has a father with MS.  I liked my first one better and miss him

[TinaMarieTX]

I'm in Limboland :(  Trying to figure out if I should go to the internist my family doc referred me to after work-up in hospital last week, or make my own appoinment with a neuro...Don't have insurance, so I tend to wait till the last minute to ever go to the doctor. Can't afford to get back on the merry-go-round that I was on 15 years ago, but symptoms are making it difficult to care for my children and lead a normal life.

History of distinct attacks? Yes
MRI lesions;  MRI in 90's was negative/haven't had one since
LP : have not had
How many Neuros so far: one back in the 90's that acted like i wasn't worth his time

[tj3762]

Limbolander:  6 years
History of distinct attacks? Yes, 2 distinct; 1) onset and 2) after allergic reaction to sulfa drug.
Exacerbations:  Multiple
MRI lesions:  No
LP: Negative
How many Neuros so far: #3

tj3762

[ozjohn]

Limboland-15years
MRI lesions 2 to thhe cerebellum  (now gone)
Mri scans    7
LP              2 both negative
Symptoms  slowly worsening (spasticity)
Neuros       2
Treatments  Nil

[schnauzerlady257]

History of distinct attacks? Yes- one so far that I know off, although it's been going on for several months with some changes, so I think that it might actually be two separate attacks
MRI lesions;  Yes- one on my cervical spine
LP : Positive
How many Neuros so far: 1 and I am seeing a specialist in Dec.  My current neuro diagnosed MS, but wants me to see a specialist to make it official I guess.

[StormyRenee]

History of Attacks: 1 definitive
MRI results: 15 lesions on brain
LP: have not had one yet
# of Neuro's: 2
EP's: Normal

Started having issues back in Jan 09' .After 6 months of all sorts of neurological weirdness finally got an initial dx of TM in July 09'.Now after finding brain lesions and having issues from head to toe the new neuro is thinking possible MS and maybe starting injections....I go back in Feb 10' to see where I'm at.

[Meaganj]

My Dx so far is "Probable" MS. It' one step up from "possible MS", since my sister has MS, and Ive had two attacks, the first lasting 6 months and I couldnt walk, the second where I can barley walk, also swallowing probs, numbness, head tremor, cognitive probs, foot drop, the "hug" around my rib cage, incontinence, visual blurriness and spots in both relapses.... you name it. I just had an MRI thursday in the middle of this attack and maybe soon I'll be on the other side of the fence. i wont hold my breath, though!
Keep fighting for the answers!!!

[Meaganj]

Oops, also Neg LP 8 mo ago, 3rd MRI, 3Rd Nuero, too!!

[puppythreads]

History of distinct attacks? Yes
MRI lesions;  Yes
LP : Negative
How many Neuros so far: #  My 5th neuro sched. for December

[impressionable]

History of distinct attacks?  Yes, ON dx in Sept 2009
MRI Lesions: Yes 3
LP: Negative with increased proteins
How many Neuros so far: On neuro #2