I forgot to ask, were the o-bands found in your CSF unique to your CSF? This means that there are o-bands in your CSF but not in the blood sample taken at the time of your LP.
If the o-bands were unique to your CSF, they would provide confirming evidence for other MS diagnostic data. THis includes MRI, other blood tests and most importantly the clinical exam.
All by themselves o-bands don't indicate MS.
I would agree that bringing in material from the NIH is a bad idea. You would likely be dismissed if you try to educate the doctor.
If you are seeing the neurologist, focus on things neurological. Discussion of hematology, APS and thrombotic episodes will also likel'y get you dismissed.
Focus on neurological symtoms. Talk about the top 4-5 symtoms in terms of how they impact you day to day life. Bring copies of all the test results you can gather.
If he asks for them you can provide them. If he doesn't, don't try and force them on him. If you give them to him upfront he may spend a significan't portion of your appointment reading through them.
Prepare a list of questions. If by the end of the appointment he hasn't answered them ask them.
You want to be prepared but give him a chance to to his job :-)
Kyle
I hear you it took over 40 years from my first MS attack to be diagnosed with MS. It took two years to be diagnosed with Cancer. What I said to my doctor was "Something is terribly wrong with me I do not know what it is but something is really wrong".
Alex
Thanks Alex. I totally understand but I have been so quiet and in the end just brushed aside. I am just tired as I am not a doc and I cannot diagnose and treat myself and so far no one is giving me a firm answer except the neuro in Florida who said it was MS. I live in Canada.
The NIH thing might just make them defensive and you won't get a diagnosis if you make them defensive.
I know you want to know diagnosis. I would if I were you.
Alex