MS Diagnosis

[NoDiagnosisYet]

Hi back again.  Had my spinal tap performed .. I have not spoken to the Dr, but after pressuring the nurse was able to get her to give me the results over the phone as the Dr would not be able to see me until next Monday... all all blood and CSF tests  came back negative.  My understanding from the nurse is that even though the spinal came back neg doesn't necessarily mean that I do not have MS (my brain MRI shows lesions .. and I have been experiencing symptoms of MS).  Here is a list of tests that were performed..

HTLV I / II
Oligoclonal Band Profile - ARUP no. 80440 (Collection- CSF & Serum-1 Gold Top)
Cell Count, CSF
Glucose, CSF
Lyme/ Ab/Total, CSF
Total Protein, CSF
Cytology, CSF
Ig Quant (IgG, IgM, IgA)
Immunofixation, Serum

Not sure what to make of some of the above, but do know that Oligoclonal Bands indicate the presence of MS and that came back neg.  Could I have still have MS ? Nurse says I still could. Since Ig Quant came back neg, can I I rule out a virus as the caause ? What questions should I ask Dr ?

[Lulu54]

Hi and welcome back through here.  I can sure understand your hesitance to begin treatment for MS since your symptoms have gone away when you changed your exercise.  Please think about getting a second opinion and get a decisive answer if you don't want to believe this doctor.  Sticking with him/her when you aren't receptive to what is being said at this time won't help you get a clear idea.

We strongly advise anyone with MS or MS symptoms to begin treatment as soon as possible so that you have a chance to keep this manageable.  The FDA has approved the use of these drugs in advance of a positive diagnosis for this very reason.


I hope you'll come back through and let us know how you are doing.

be well,
Lulu

[NoDiagnosisYet]

Hi Kathy

What's your story Kathy ?  Has anything showed up in your MRIs?  

I went back to see my dr to discuss the results and he diagnosed me with atypical MS.  The good news is that he thinks it is manageable.  I too, like yourself feel ok but get occasional numbness and tingling in different parts of my body.  Haven't had the lower back pain/ weakness in legs return.  What's interesting is that I found my symptoms went away completely when I stopped working out (used to run on the treadmill).  I went to the gym on Monday, and I started getting symptoms again.  

I have decided to go for another opinion before agreeing to go on any meds .... though my dr recommended I do.  Planning on going back for another MRI in August as well.    

[kathy322]

I too have had all the test as listed above.  They are all w/in normal limits.  However I demonstate all the "classic" signs of MS.   I am feeling good and have been mildly annoyed by the numbness in my leg and arm.   I have occassional numbness & tingleing in my neck.  I am in the " Wait & See"  phase.  Although this is frustrating, i am not considering treatment since none of these symptoms are effecting my abilities.  
Where are you at this point.   I can not believe the number of people who have no doagnosis, but still present with all the classic symptoms.  I  have asked the neuro, i f there is a possibility that the test results are neg, but I still have MS.   She told me, she would have to refer to the clinical data.   I have another appointment with her later next month. I will see what she has to say by then.  Hope u are feeling better.  

[NoDiagnosisYet]

Thanks Fluffy

Mind if I ask if you are being treated for MS at the moment ?

[Fluffysmom]

Hi there.

There is a great Health Page about this subject, and I recall it said that 1 in 25 people with MS have negative LP results.  I'll see if I can put the link to it in here:

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/1

I'm also a person with lesions on my brain MRI, neurological symptoms, and a negative LP.  I'm still not diagnosed, but have ruled lots and lots of stuff, and am learning tons along the way.

I hope you're finding this forum helpful; it's made my life more bearable, and I've really come to care about a diverse bunch of people that are smart, witty, helpful, and caring.

Take care,

Kathy

[NoDiagnosisYet]

Anyone out ther that can help ?