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JenEpicFarms

Mar 13, 2010

To: Mousketeer Roll Call

Holy Hordes! There ARE a lot of us, aren't there?

History of distinct attacks? Yes
MRI lesions; No
LP : Not yet*
How many Neuros so far: 2

Neuro #1 said possible MS; Neuro #2 said impossible due to clear MRI
Referred by Neuro #1 to Mayo Clinic (which will be Neuro #3) for additional testing

*Am assuming Mayo will do LP (and hoping they will do another MRI on their big, bad 3T :o)

alixjo

Mar 14, 2010

History of distinct attacks? Yes ON April 09, sensory symptoms Aug to date
MRI lesions; Yes Multiple brain, one c-spine
LP : Positive
How many Neuros so far: 1 (Locum neuro, getting transferred to permanent Neuro at regional hospital)

Alixjo

mrswillie

Mar 14, 2010

History of attacks: At least 2-3 "episodes"
MRI: no, normal
LP: never had one
# of Neuros: 1 so far

unmaestro

Mar 14, 2010

History of distinct attacks: Yes, For about 2 years I've had weird, extreme symptoms. Since the L'Hermitte's Sign first arrived around 6-9 months ago, plus tingling and burning, I've been going to doctors.
Lesions: none have been picked up on yet
LP: haven't had one yet
How many neuros have I had?: On my first one but seeing a specialist in April

twist330

Mar 14, 2010

Hi all,
Thought I would let you know a bit about me.
Back in September 2009 my fingers on my left hand started to go numb, I was seeing an elbow specailist at the time as I had badly injured my elbow a few weeks earlier. He was convinced that I had carpel tunnel syndrome even though all the tests came back negative and it was all my fingers going numb and by now so was my arm he was still pushing to do CTS op. When I refused he suggested a steriod injection then if it was CTS it would resolve the problem in the short term and we would know I definitley needed the op. I did the steriod injection it did nothing.

In the mean time I had been to see my GP as I was upset that the specailist was being so single minded. By now it was mid-November and the feeling of pressure/numbness was not only in my arm and hand but was going over my head. He referred me to a Neurologist.

The Neurologist examined me and arranged an MRI of the brain and cervical spine. He felt that I had brisk reflexes.
The results of the MRI showed a solitary T2 Hyperintense focus in the right parietal subcortical white matter which is non specific and by no means diagnostic of demyelination.

By now I was having a problem with my right eye, not the sight but pain around it and moving it and it is a real problem to look up or straight a head for any length of time. I was now getting pins and needles down my legs. I also have spasms in my limbs.

My Neurologist arranged for brainstem potentails, EEG and a lumbar punture. and all of these have come back normal.
He has also arranged another MRI with contrast which I have not had the results of yet.

It has been 7 months that my symptoms have gradually been getting worse I am not taking any medication and my neurologist has suggested I have a second opinion as he does not know what is causing my problems.

So that's me for the moment.

Celery47

Mar 15, 2010

Well hey everybody!  Count me in as a limbolander (awesome name, btw).

History of distinct attacks? Yes - maybe 3?  Five weeks of ascending numbness, feet, legs, hands, face up to my eyelids; several months with a numb piece of the sole of my left foot; about two months of a cold patch on my left calf.

MRI lesions: None!  I've had 3 brain MRIs and they look totally clean - and totally awesome!!!  How cool is that, we get to see our own brains?  You guys should request a CD of the images if you haven't already, because it's WILD.  Haha, sorry, I'm just really into brains :P

LP: Positive - 10 OCBs unique to CSF, 9 white cells, but everything else good (protein, IGG ratio, glucose, and no syphilis, hehehe - sorry I shouldn't laugh at syphilis).

How many Neuros so far: Three!  One of them a one-time specialist, and two regular neuros.  I like the one I have now.  He seems extremely rational.  My mom once laughed at his kid, though, and unfortunately, he DEFINITELY overheard it... hahaha, ohhhh mom.  Yeah, that was not a happy appointment.

I just want to say, it is so, so, SO good to be able to read all of yall's stories.  This limboland drives me straight up the wall sometimes and, well, as horrible as it is that all of you all are going through this monkey business too, it's just so good to know I'm not alone!  So, I just wanted to say - thank you for sharing.

stella213

Mar 15, 2010

History of Distinct Attacks : YES
MRI : HAVEN'T HAD ONE YET
LP : DIDDO
#of Neuros : 0

Quix I'm working on my story over in my journal. It's locked right now because it's nowhere near finished. I can't begin to describe how much it wears me out working on anything more than a few paragraphs and know it must be hard on you doing health pages and taking care of all of us the way you do.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Just say the word and I'll unlock it. I just want to make sure you know it's not done.

OH! Listen I've made some progress and you may remember I knew nothing when I got here rt? I had a bout of optic neuritis in '04-got the records to prove it. Also got my other records and they show two visits to the er a yr. and a half apart when I couldn't breathe, felt like someone was squeezing around my ribs, and a sharp,stabbing pain in my abdomed-sounds like something I've heard about here involving an anaconda. ??

Shocking really. I didn't even remember until I saw the records. Can't wait to have my tests done so I can finally have an answer.

Stella

ack65

Mar 15, 2010

To: Quixotic1

History of distinct attacks? Yes over the last 6 years for sure but could be longer.
MRI lesions; UBO's in brain MRI, none in c-spine
LP : not done so far
How many Neuros so far: # 1 said Migraines 5 years ago, am on #2 waiting to see him about MRI results done 3 weeks ago

Queenfan

Mar 16, 2010

History of distinct attacks? Yes/ No -YES
MRI lesions; Yes/No - none found in brain; no c-spine MRI done yet
LP : Positive/Negative- NEG.
How many Neuros so far: # - ONE, so far.

jenandherboys

Mar 17, 2010

History of distinct attacks? Yes, 12/2/2009 til 2/14/2010 and now realize 09/2009 til 10/2009 was more minor attack
MRI lesions; Yes, 2 foci of increased signal within the right frontal
deep white matter on brain MRI, no enhancement after contrast
LP : Negative
Blood work: only Vit. D deficient, all else normal

How many Neuros so far: 1 neurosurg. who said the bulging disk (which I've had >1 year as of MRI in 02/09) was not the cause of my sx's-more likely due to "spots" on brain MRI, he referred me to neurologist for further eval.; so far all sx's are classic MS, but once LP was clear, neuro sort-of dropped out of sight. Spontaneous, near complete, remission of sx's over several days-sx's "gone" as of 2/14/2010.

amers789

Mar 17, 2010

To: Quixotic1

Hi all Limbolanders:

History of distinct attacks: yes four episodes: Diagnoses are bilateral TN and Undifferentiated connective tissue disease
MRI Lesions: Yes multiple in periventricular and frontal lobes
LP: positive for 4 oligoclonal bands found in CSF and not in serum as well as a elevated IgG index
Neuros: Two, possibly going to go for 3 but waiting to meet again with my rheumatologist and see if she can help figure this out...

Quix put my summary in my journal section:)

Have a great day one and all. Amers

mewright

Mar 19, 2010

History of distinct attacks? Yes
MRI lesions; Haven't had MRI yet
LP : Not tested yet
How many Neuros so far: 1 appt on March 22nd @ 8:30

Maryellen

johnniebear

Mar 20, 2010

History of distinct attacks/remissions? /   mild left eye pain for 2 weeks-  not sure if that counts..

MRI  brain lesions;  Yes-3
LP : just one O Band
How many Neuros so far: # 3
Has MS been considered? yes
VEP- positive-
Spine MRI   One lesion at C5-C6  maybe

suzieqs

Mar 22, 2010

History of distinct attacks: yes 4
MRI Brain lesions yes 1 6mm round right ventricle wall, also prominent sella(empty sella syndrome)
How many Neuros so far-none since MS being considered, saw one in FL while visiting sister due to an attack that hospitalized me for 5 days. Don't remember if they did an MRI down there I haven't gotten all of my medical records from there, but that's where they started my SSD at that time.

MonkeyMom4

Aug 08, 2010

Attacks: Yes
MRI: No lesions
LP: Haven't had one yet.
Neuro: #1

-Kelly

figuerpa

Aug 09, 2010

History of Attacks: yes
MRI lesions: yes one head and spine
LP: Still waiting results
How many neuros: Just the one so far

jujuminx

Aug 09, 2010

To: Quix

History of attacks- yes
MRI- have had 3 or 4 head, no lesions found but abnormalities
MRI- of spine will happen this week
LP-none yet
Neurologist-on 3rd but this one thinks I have it. Feel he is really up on MS.

My stress level off the charts!

Julie

michelleislay

Aug 09, 2010

To: quixotic

history of attacks:  no.  this is the first one, lasting 2-3 months now.

MRI lesions:  my PCP did a CT only and it was clean

LP:  not yet

# of neuro's:  going to see the first one today--phew!!

michelleislay

michelleislay

Aug 09, 2010

just posted a journal entry explaining who i am and why i am here!!

VictoriaDouglas83

Aug 09, 2010

History of distinct attacks? Yes, stomach problems for about 10 years.  Numbness, eye sight, pain and tingling for about 3 years now.

MRI lesions;  I have not had a MRI yet.

LP : I have not had a LP yet.

How many Neuros so far: I went to one last year about the numbness and pain in my left arm.  He said there was nothing "too serious".  I am going to one tomorrow 8/9/2010 for these problems and what my doctor says "symptoms the sound like MS".

helen41

Aug 09, 2010

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

Pablo_Morphy

Aug 09, 2010

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.

janbubears

Aug 09, 2010

To: all

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

missy72450

Aug 10, 2010

To: quixotic1

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

bairdy

Aug 11, 2010

To: quix

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

Erin65

Aug 11, 2010

To: Quix

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.

Audrey_M

Aug 12, 2010

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.

mamiJ

Aug 13, 2010

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

marymoto

Aug 16, 2010

To: quixotic

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.

JemmAus

Sep 09, 2010

I suppose I need to be OFF the "diagnosed" list and back on here...........yipee.

JemmAus

Sep 09, 2010

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....

ernnmer2004

Sep 09, 2010

To: quix and everyone

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?

jumpinjiminy

Oct 17, 2011

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.

Sidesteps

Oct 17, 2011

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.

sllowe

Oct 18, 2011

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:

emmyvera

Oct 21, 2011

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)

jibjen

Oct 22, 2011

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

sperry77

Oct 23, 2011

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.

Twinsmom06

Jan 06, 2012

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.
.

daisy900

Jan 06, 2012

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

heartfelt77

Jan 07, 2012

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.

heartfelt77

Jan 07, 2012

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.

geminicin

Jan 07, 2012

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

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