Neuro Appt

[SoccerGrl]

Hi all,

I went for LP results today and I am a little  confused the doctor told me that there is a immune response going on in the spinal fluid, still waiting on the results of the bands to come back.

He said I have moderate chance of this being MS. My question is what tests in the spinal fluid says what the immune response is. Basically which test is it.

Do I have a right to ask for a copy of tests? Should I get a second opinion, he wants to see me in 30 days to see if I should start treatment.

I am very scared.

Jen

[SoccerGrl]

Bob,

I am still confused the codes he uses are 336.3 and 782.0.
  I am just lost he said a moderate chance of having MS he said 50/50 what is that. I dont know what to do I cant tell if I have anxiety over the issue or I have symptoms, I dont knwo what I have.  How can doctors not explain things, I still cant find any info on what a immune response in the spinal fluid means.

I dont want to stress out but I am. If he wants to discuss treatment options doesnt that mean he thinks I have MS, or that he thinks I have a good chance of having it in the future.

So hard.

Jen

[COBOB]

50/50 is not a diagnosis.  Probable MS is a valid clinical diagnosis.  If he is talking treatment options, I'd make sure the ICD9-CM is coded as 340.  There are some other codes like 341.8 (Other demyelinating diseases of central nervous system) and 341.9 (Demyelinating disease of central nervous system unspecified,)  The last two codes are "Limbo land" codes.  They can create problem with coverage for DMDs.  This may need to be part of you discussion with your doctor.

Bob

[SoccerGrl]

Thank you, the doctor said no matter what the Bands blood test said it would not change is diagnosis.

He said 50 50 chance of MS, and in the next 15 yrs I have a high percent chance of being MS.

I guess I really dont understand what a immune response is I have tried to look it up but no luck.

I go back in 30 days to discuss treatment options.

Jen

[COBOB]

Most of the time, the local hospital lab will do the IgG test.  That may be what your doctor is looking at.  Even some of the big hospitals and medical centers do not do the IEF testing and they send it out.  For example, the University of Colorado Heath Sciences Center send the IEF testing out to University of Utah's National Reference Lab.  The Large labs that do a lot of the IEF testing seem to have a better track record for accuracy and repeatability.  The labs typically take a couple of weeks to get the results back to your doctor.

Bob

[Lulu54]

Yes, If you are in the US you should have copies of your results.  You are legally entitled to those and it is helpful to have them if you go to get a second opinion now or if you change doctors further down the road.

The o-bands is the big result - they want to see how many UNIQUE bands are in your CSF that are not present in your blood serum.  

As for the second opinion, I would not switch horses for this race right now when you may be on a winner.  If you have doubts AFTER your followup, that is when you would want a 2nd and even a 3rd or 4th if needed.

be well,
Lulu