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147426 tn?1317265632

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!

Thanks,

quix
212 Responses
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5340584 tn?1436669608
#11 Limblolander

1) History of attacks: Yes

2) MRI lesions: Yes

3) LP: Negative

4) VEP: Abnormal

5) Spinal Lesions: No

6) VNG: Abnormal

4) How many Neuros: 3
Helpful - 0
1947438 tn?1326495402
Attacks: unsure, seemingly ongoing for the last 3 years, but I believe at least 2 previous episodes over the last 20+ years- not as severe as the latest.
MRI lesions: no results yet- due to find out on the 13th
LP: not yet
Neuros: first one! she thought at first peripheral neuropathy but that has since been ruled out.

Cindy
Helpful - 0
1858011 tn?1319837353
I'm sorry I know this is an old post. But, I thought I would give it a shot.

  Take care
    Misty....... To, quix we haven't met but, I've read some of your very well written posts and research u r a wonderful woman for all this info. And, love lies my neuro told..   love, love, love....  It....   I can relate to so many....  Thanks for all u do....   And, I really hope u r well and doing good.

Oh, forgot to add,  Neuro, number is 3 for limboland.  These are all regular neuro.  
Helpful - 0
1858011 tn?1319837353
Attacks,  I'm going to say 3 within a 2 1/2 years.

  Mri,  clear but scarring and on a 1.5.  I've had 10 within 3 yrs. Ya I know a lot

   Lp,  well,  let me say this Dr says normal, report says not positive but,not negative in the middle,  this makes no sense to me. No bands and igg is 0.80 whatever that means.

  Evoked testing, they tested everything, report says adnormal brain stem and adnormal hearing test.  But, Dr is not concerned.   That's just amazing to me.

  I have too many symptoms to list.  I'm on b/ p meds and water pill for swelling. Gabapentin and zanaflex.  Gaba doing nothing.

My plan I have appt on Feb 7 with the department of neurology in Pittsburgh,pa I don't have a lot of hope but, willing to try.  Also, I know have two adnormal  EEG's and EKg's.  Low vitamin d not anymore. And know taking b-12. It's not really doing anything. Plus I'm on cranberry vitamin for uti's.

After Pittsburgh, I'm headed to john Hopkins .....  With any luck I may have answers soon.

That's my story in a nut shell....   And, I thank this forum for all the support and advice  because, I couldn't have took a stand for my health without u guys.

I'm now in control because of being well educated......  Here to a better year of well being.  And standing up for our own body.

Hugs guys
Misty........   Like everyone says we know our body and how true that is.
Helpful - 0
1807779 tn?1333840302
Attacks: 2  separate attacks since may last year.

MRI lesions; 3

LP; positive

Neuros; still on my first one had positive VEP also .
More scans booked for April and return appointment with neuro in April
Helpful - 0
1896811 tn?1323978359
Attacks: I think (ugh) episodes of vertigo and numbing on my left side that comes as goes as it wants to.

MRI lesions: Yes, many typical on the brain but negative T and C spinal MRI

LP: Negative

Neuros: Still on my first one who has been AMAZING. With each negative (LP and Spine) he keeps pushing forward to find out what I have going on. I had AEP and VEP testing done and will have follow-up MRI in 20 days to look for changes. I will get the results of both in February 2012.
.
Helpful - 0
1849495 tn?1344017411
Well, I'm new here but have been luking for awhile. This will be my first post! :) I will do an intro about myself soon. When I get some quiet time :)

Attacks: More than a few over many years.

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

LP: 2003 negative

Neuros: Been to a couple way back when symptoms started. Went to MS clinic then as well. They said if another symptom appears to go back. Never did, plus my neuro moved. should have gone as I have gotten worse with more symptoms over the years. Currently doc. put in a referral for a neruo, so I'm still waiting for my first appointment in years.  
Helpful - 0
956292 tn?1334054869

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

JibJen
Helpful - 0
Avatar universal
History of attacks: 1
MRI: Yes, waiting on results (tested for MS with/without contrast)
LP: No
# of Neuros: 1 (thinking of getting a second opinion at some point)
Helpful - 0
198419 tn?1360242356
Suma - I used a bad word - Sorry, I'll be more careful.

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

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

Limbolanders:

Attacks:
MRI lesions:
LP:
Neuros:
Helpful - 0
1475492 tn?1332884167


History of distinct attacks? Yes - 3

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

2nd - Facial pain

3rd - Hearing fluctuations, tinnitis and palatal myclonus

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

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

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

LP : Negative

How many Neuros so far: 4th - I'm now under the care of a MSologist whom I love.
Helpful - 0
Avatar universal
Well, since it's here, I'll add mine.

Attacks: 5 since last year.
MRI lesions: None
LP: Negative
Neuros: 3 and advised to go up a level to find a fourth.
Helpful - 0
Avatar universal
History of distinct attacks/remissions? Oh, I think so.
MRI lesions;  A few iffy spots
LP : have not had one yet.
How many Neuros so far: # 1  thinking I need to seek another.
Has MS been considered? Everyone who has talked to me, even Neuro #1, but was dismissed after MRI.  Then came all the blood.  Only abnormalities, Low B12 and Toxic B6.  I have been suplimenting B12 for 5weeks.  And do not take anything(not a multivitamin or anything herbal) else.  I eat healthy.  

Unsure what I next move should be.  Could it really be I am simply deficient in B12?  How long until I feel the results?

Any advice?

Helpful - 0
Avatar universal
Oh I see the list:

Lesions: "extensive". Too many to count. Some up to 15mm in size.

LP: no. haven't got anyone to look after me afterwards. Though LPs have been ordered twice.

Neuros: 4 or 5 or  thereabouts. I lose track....

Helpful - 0
Avatar universal
I suppose I need to be OFF the "diagnosed" list and back on here...........yipee.
Helpful - 0
Avatar universal
limbolanders count off hi ia m still in limbo first sx were vertigo in 2004 also nystagmus.then 2006 had first relapse numbness down right thigh, burning spasms, down thigh,difficulty walking,balance issues,got better after a long time,2009 numbness in legs, spasticity difficulty waqlking, balance issues, several relapses since then, ongoing visits to m.s clinic optic neuritis, afferant pupil defect, and optic atrophy,brisk reflexes, clonus in left leg,ongoing  numbness and tingling in legs worse in right leg and down right side.mri showed lesions in the pons area.waiting results of lumbar puncture forgot to say i have tremor, issues walking, dizziness,weakness in legs, and fatigue wow it fells could to get this off my chest. gp says m.s but neuro has to diagnose.
Helpful - 0
Avatar universal
History of distinct attacks?
not sure...I noticed a patch on my upper back about 2 years ago that would tighten and the buzz for a few seconds and stop.

this has never stopped since it first started, but I never knew what it was, even though I asked every doctor I saw since it started and they all looked at me like I was crazy.

A little while after that, I started to feel the buzzing in my head.

In November 2009, I started to have paraesthia and shooting pains..which also has not gone away since

In June 2010, felt tightness in arms/chest/back, fatigue increased about 100% and legs/walking affected

August urinary problems and lump in throat/throat tightness

MRI lesions;  have not had one yet
LP :have not had one yet
How many Neuros so far: # 2
Helpful - 0
1260255 tn?1288654564
History of distinct attacks? Yes
MRI lesions;  Yes- Multiple brain, no spinal
LP : Negative
How many Neuros so far: # 3

Was waiting for radiologist's report on spine before I posted.

It appears that many of my motor/sensory problems are due to degenerative disc disease. This would explain numbness and tingling, pain, hyperreflexia and tremors in my legs and right hand. DDD can also explain headaches, lightheadedness/dizziness balance and bowel problems.

Still don't know why I have so many brain lesions (which are atypical for MS) and cognitive problems with language and memory, along with blurred/double vision.
Helpful - 0
Avatar universal
History of distinct attacks? Yes, many.

MRI lesions;  Yes - but just one

LP : Positive/Negative...both

I've had 3.  May 1989..."trace proteins" (handwritten notes)...
                May 2010 : 5 bands = positive.
                July 2010:  1 band (done 13 days after a 5 day tx of IV SoluMedrol) = negative

Due to the lastest results, my May spinal tap has been ruled a "lab error" and this last one has been ruled the "accurate" one.  : /  Ergo, I don't have MS, according to my neuro.

How many Neuros so far: # 3  1989, 1995 and now.
Helpful - 0
1168317 tn?1330262837
hi
history of attacks. not sure but progresive for few years now
mri scan 2 one brain one lumber two liesons not concusive for dx
Lp not yet
how many neuros 2  seeing second one in october

regards bairdy
Helpful - 0
934553 tn?1275274379
History of attacks: yes at least 4 or more that I know of
MRI: 2 lesions nonspecific
LP: results elevated protein and the SPILLED THE REST befor they did the MS panel
# of neuros 2

I see a Rheumatoogist soon

Missy
Helpful - 0
1336491 tn?1340619541
Hi All

started in december 2009

numbness in left arm moved down to fingers hand ..

permanently numb not coming and going, neck pain .. limbs muscle spasms now have buzzin in head, legs.

dizzy spells, extreme muscle fatigue and general fatigue sleepy in afternoon.  extreme itching..

started off with spinal surgeon referal, for 1st MRI - he refered me to neurologist.

Had brain scan with contrast and 3 mri,s .

findings swelling on spinal cord, and hyperintensity on brain scan.  Awaiting results now from LP.

8 months on sx exactly same, had 3 x day meth/predisolone IV in hospital but they had no effect except my cognitive thinking shrper

jan xxxxx utterly totally fed up xx
Helpful - 0
1323278 tn?1298122488
History of distinct attacks?  Yes, at least two:  One 11 years ago and another one recently.  Both attacks involved eye problems (optic neuritis the last attack) and tingling (worse in second attack).
MRI lesions:  Recent MRI - Two lesions + optic nerve.  First MRI:  One lesion about 7 years ago.
LP:  No LP yet
How many Neuros?  Tricky question.  Several Neuros until seen by team of specialists who diagnosed me with Clinically isolated syndrome/likely MS and prescribed Copaxone 3 months ago.
Helpful - 0
1281603 tn?1283798699
history of distinct attacks- yes
MRI lesions- 1st MRI in 1997-can't r/o MS (settled on encephalitis)
                   2nd MRI in 2005- one lesion, several punctate, can't r/o MS (neuro said normal)
                   3rd MRI in 2010- numerous punctate lesions, chronic       microvascular disease
I've never had contrast or spinal MRI
LP-never
# of neuros 2
working diagnosis- narcolepsy, possible chronic fatigue, muscle aprophy NYD
Helpful - 0
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