Need some advice

[Arijana]

I'm a 43 year old, healthy, working woman with probable MS.  I don't have the report in front of me although MRI in Feb 08 showed 4 lesions; symptoms are blurriness in right eye, chronic pain in arms and legs, muscle stiffness, strange sensations and numbness at times in limbs and of course, extreme fatigue.  A diagnosis of probable MS was given in mid Feb although results of spinal tap showed no oniglocanal banding.  
My neurologist is now saying NOT MS; I am scheduled for MEG and Evoked Potentials, but wonder if it's worth my while...
Thoughts??

Thank you

[young at heart]

PLEASE POST A SEPARATE THREAD SO MANY HERE CAN WELCOME YOU AND MANY CAN ANSWER.

T-LYNN

[MRI321]

Thanx for welcoming and thanx for the advice. I wasn't sure what was going on. he also told me that the white spots could be nothing at all Is this true?

[young at heart]

WELCOME,

MRI'S ARE THE FOUNDATION TO A DIAGNOSIS TO MS,NOT JUST ONE SINGLE TEST RULES MS IN OR OUT IT NEEDS TO BE A SERIES OF TEST,MRI BRAIN,C-SPINE,THORACIC,PLUS NEUROLOGICAL OFFICE TEST.SOME DRS. STILL USE THE LUMBAR PUNCTURE.THERES A SERIES OF EVOKED POTENTIALS THAT ARE USED.THE VEP, BAER,SSEP.MS IS DIAGNOSED BY THESE TEST AND THE EXCLUSIONS OF OTHER DISORDERS.

T-LYNN

[Arijana]

Thanks for your kind words; I'm seeing an opthamologist next week; most recent MRI included the C-spine and thoracic; no visible lesions, I was told.  To rule out other disorders via the spinal tap, would the Neuro order specific tests, or does the lack of o-bands simply rule out any auto immune disease?

Interestingly enough, the Neuro suggested that fatigue is not typically associated with MS?? Perhaps it is time to seek out a MS specialist!!

[MRI321]

Well, actually I thought my sight was very good, once in a while my left eye gets cloudy I guess you could say. but that happens to everyone too right? and If I had ms wouldn't these symptoms lastlonger than just once in a while? I am TIRED ALL THE TIME! I can't stand that. No one in my family haas ms. he told me that he simply wants to rule ms out. but what would make him think that it was MS just from an MRI?

[young at heart]

WELCOME TO OUR CYBER FAMILY, SORRY THAT THE POSSIBILITY OF MS HAS BROUGHT YOU HERE.GLAD YOU HAVE JOINED US.

YOUR SYMPTOMS ARE DEFINATLY ARE NEUROLOGICAL.

PLEASE GET COPIES OF ALL YOUR TEST RESULTS.THE MRI FILMS WHICH CAN BE PUT ON A CD AND THE REPORT.THAT WAY YOU HAVE THEM FOR YOUR PERSONAL RECORDS.

KEEPING A JOURNAL HELPS YOU AND YOUR DRS. NOW AND IN THE FUTURE.

NOT EVERYONE THAT HAS MS HAS O-BANDS,THIS TEST RULES OUT MANY DISORDERS.SO YOUR NEURO IS CLOSED MINED ON THIS.

HE ALSO APPEARS TO BE A LESSION COUNTER.

ITS A PERSONAL CHOICE TO HAVE THE TEST DONE,BUT PERSONALLY I'D HAVE THEM DONE.

WITH THE EYE TROUBLE HAVE YOU SEEN AN OPTHAMOLOGIST?

HAVE YOU CONSIDERED SEEING A MS SPECIALIST?

I AM NOT A LIMBOLANDER,I HAVE MS.

IF INDEED THIS IS MS,IT IS LIVEABLE AND MANAGEABLE.FOR THE FATIGUE,HAS YOUR NEURO TREATED IT? PROVIGIL IS VERY EFFECTIVE.

HAS YOUR NEURO DONE ANY MRI'S OF THE C-SPINE AND THE THORACIC AREA,LESSIONS ARE NOT JUST CONFINED TO THE BRAIN.

ONCE AGAIN WELCOME.

T-LYNN

[MRI321]

I have had an abnormal MRI with contrst of the brain. My doctor wants to rule out MS. He has ordered a number of test such as VEP, and they took 15tubes of blood from me today, and a spinal tap on monday. I have read the MS symptoms, I am 37 years old and quite a few apply, however, isn't it true that everyone has these things from one time to another. My symptoms are not chronic. I have embarassing enough had one episode if incontentence and I have never told anyone. I was at work and went to stand up and I don't know why but I urinated on myself and I honestly didn't have to go, but every time I tried to sand up more urine would pass. I know what this sounds like. But like I have said no actually admits to these things. He didn't say thatit is MS, but he wants to rule it out.  He said I have 4-5 white spots on one side of my brain and 4-6 on the other. No tumers or cycts. What else could this be?

[Arijana]

These symptoms and this probable diagnosis has all happened quickly - since Feb 08, so I'm not as entirely frustrated as those who have been waiting a diagnosis for some time.  Do my symptoms mimic an autoimmune disease?  Would that not show on the spinal tap results or are the tests disease specific?  Perhaps my neuro was simply testing for MS and nothing else?
I'll read the link; thanks for your reply.  You have me thinking that perhaps I should not dismiss these symptoms rather seek another opinion and further testing.

[jensequitur]

Arijana, lots of people with autoimmune diseases and symptoms like yours remain undiagnosed, because the doctor just can't figure out what's wrong with them.  Hence the designation 'limbolander' - people with definite symptoms, but without a definite diagnosis.  

Unfortunately many limbolanders are told that the symptoms are from conversion disorder, or somatization disorder, which is just a polite way of saying that they're crazy and imagining things.  

I've been passing the link for this article around - I guess I need to go ahead and get the book!  Here's a quote from it - well worth the read.

"The average patient with autoimmune disease sees six doctors before attaining a correct diagnosis. Recent surveys conducted by the American Autoimmune Related Diseases Association reveal that 45 percent of patients with autoimmune diseases have been labeled hypochondriacs in the earliest stages of their illnesses. Some of this, no doubt, has to do with the fact that 75 percent to 80 percent of autoimmune disease sufferers are women, who are more easily dismissed by the medical establishment when hard-to-diagnose symptoms arise. In half of all cases, women with autoimmune disease are told there is nothing wrong with them for an average of five years before receiving diagnosis and treatment. "

http://www.alternet.org/healthwellness/80129/?page=entire

[Arijana]

Thank you; not entirely sure that I've figured out how to use this forum, but it's nice to talk with those in limboland!

[Wobbly]

Hello, welcome to the forum....Limbolander some of us here that are in Limbo...in the process of getting a Dxs... going for tests and waiting for appointments... It can take quite awhile to get any kind of Dx and this forum is great for people like myself in Limboland...take care

andie

[Arijana]

I'll bite....what is a limbolander?

[Arijana]

Thanks to both of you.  The symptoms at present aren't debilitating although the fatigue is becoming difficult to manage.  The percentage of those without banding diagnosed with MS is quite small; I'm encouraged by the news that it probably isn't.  The neurologist did mention carpal tunnel and fibromyalgia in his report; neither of these are associated with lesions.  Can a person have non specific brain lesions??

[jensequitur]

Of course, it's up to you - are these symptoms bothersome?  Enough to make your day difficult if they're acting up?

With 4 lesions in your brain, it sounds like you're having some sort of neurological problem.  It could be anything from Lyme disease to thyroid problems to several varieties of auto-immune diseases... some of which are curable, some of which are not.  If it is MS, the damage will continue, and your quality of life will decrease.  

If it were me, I'd go ahead and continue with testing.  However, MRIs and spinal taps are the most conclusive testing done for MS.  If the spinal tap doesn't show oligoclonal banding, then the other tests won't help to confirm the preliminary diagnosis.  They will help to show how much damage you have, however.

Something your neuro might not have heard of - Optical Coherence Tomography.  Your optic nerve will show atrophy, and it's easier to see without the myelin covering that you get in the nerves of the brain.  Optic nerve atrophy is regarded as a sure sign of multiple sclerosis.

[cz1970]

Yes have the other tests done because the LP can be negative for some with MS.  The MRI's can be negative as well, so your ahead with a positive one.  Was this your first set of symptoms or have you been having problems for a while?  Let us know and welcome to the site. THe people here are awesome!  I'm a limbolander here myself.

cz