I have all my test results and discs of MRI's, I have all my neuro's notes. My neuro doesn't seem to want to call it MS, simply because of the O-bands being present in the serum as well as the CSF even though they are more prominent in the CSF.

This is from the MRI report:
IMPRESSION:
1. Several small non specific foacl areas of hyperintensities in the periventricular deep white matter of the frontal and parietal lobes bilaterally which, in this patient's age, raises the possibility of mulitple sclerosis and clinical correlation and follow up is recommended.
2. Mild chronic sinusitis of the left maxillary sinus.

A year ago, an ER doctor mentioned my neuro issues were probably from complicated or complex migraines. My migraines are pretty much daily and the topamax is not helping again. My neuro had mentioned fighting with my insurance company to cover Botox prior to the MRI in March. Once he read the MRI report, he seemed determined to rule out MS and looking at nothing else. He sent me to an MS specialist to rule out MS.

Thinking a third opinion is a priority, I really don't think Botox is something I want to play with.

Thank all of you for your support and wonderful thoughts, ideas, and humor. (HUGS & SMILES to you all!!!)

Bddouglas, did you say that you do have o-bands? It is my impression that the presence of o-bands is an indication of active MS.

I found the following on Wikipedia under Oligoclonal Band:

“Oligoclonal bands are an important indicator in the diagnosis of multiple sclerosis. Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands”.

I’m confused. Do you think that your doctor thinks that the absence of o-bands would suggest an absence of MS? I’ve always thought it was the other way around. Huh?

This is from my LP report:
Bands noted Reference Range: No bands The patient's CSF contains 3 well defined gamma restriction bands that are also present in the patient's corresponding serum sample, but some bands in the CSF are more prominent. This pattern is associated with Guillain-Barre's syndrome, peripheral neuropathy or increased permeability of the blood-brain barrier secondary to infection or trauma. Oligoclonal bands are present in the CSF of more than 85% of patients with clinically definite multiple sclerosis (MS). To distinguish between oligoclonal bands in the CSF due to a peripheral gammopathy and oligoclonal bands due to local production in the CNS, serum and CSF should be tested simultaneously. Oligoclonal bands can however be observed in a variety of other diseases, e.g., subacute sclerosing panen- cephalitis, inflammatory polyneuropathy, CNS lupus, and brain tumors and infarctions. The clinical significance of a numerical band count, determined by isoelectric focusing, has not been definitively defined. The data should be interpreted in conjunction with all pertinent clinical and laboratory data for this patient.

Now, I may have had a couple of concussions (one as an infant at 2 months old and one in my mid 20's) only trauma that I may have had. Unless my constant migraines have caused trauma, they say complicated migraines can cause closed head trauma. None of the other possible listed diseases fit my symptoms.

So on I march to another neuro, rheumatology, and anyone else I can think of to try to find answers and rule out other possiblities.:-) I refuse to sit and wait out 5 yrs. I figure if everything else is ruled out, then what is there? I will even go to psychiatry to rule out my own psychiatric health issues. LOL I just want to get to the bottom of it all.

I think the doc is looking at the o-bands, however the presence in serum as well as CSF is where he's thinking it's not MS. A study suggested that o-bands in the serum is more indicative of neuropathic disorders over MS. Although that study did also find one pt who had both, out of 146.

Return to stats class for a moment, and view statistical significance... Starting pop. 1874, positive pop. 146, variance found 1. Don't even have to do the math to see that it is a insufficient test regulating data to correlational study and requires much more testing. You can find the excerpt here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014760/

Now some of it could also be the location of the white matter. Different areas in the brain point more to one disorder over another. Unfortunately, MS doesn't hold the copywrites for demyelination. For MS they're largely looking for lesions in and around the corpus callosum. So that might be another reason the doctor is trying to rule it out. Especially since migraines can cause an increase in lesion-like showings on an MRI.

However given the doctor's argument that there are not lesions in the spine... I would definitely go for a second opinion. And given the presence of o-bands both in the serum and CSF, both of which are indicative of demyelination linked to probably both a CNS disorder of unclear dx at this time, as well as a PNS disorder.

Even if they are disorders outside their specialty, they should at least assure you there is clearly something medical going on, and even if they don't think MS they should be able to give you some ideas on what it could be then.

I am not upset that it is not MS in their way of thinking. I just want to know what is going on. I am in pain all the time and I have cognitive and memory issues. I have speech, vision, hearing issues off and on. Some times when I type, I have to go back and correct my typing because the letters are all there but they are all jumbled up...much like my speech does at times and my hearing does at times, and now my fingers are doing. It just seems that something is short circuiting.

Sometimes, I think my neuro should have set his primary focus on my migraines and his secondary focus on ruling out MS since it was a secondary possibility based on the MRI. If my neuro issues are from my migraines, then they are continuing to get worse while he has wasted time ruling out MS. My body aches and I have spasms from head to toe with nerve twitches and nerve pain at left shoulder blade into rib cage that seems to make be want to hold my breath from time to time.

I will throw all this at my PCP in a week and see what referrals I walk out with...he is very proactive. I am sure rheumatology and probably cardiology just to rule out heart issues (because of the rib cage pain and family heart issues and I had a EKG last December with a prolonged QT wave and an abnormal T wave) doesn't explain everything else, but I know my PCP...

By chance, were your MS specialist's initials B.S.? He sounds like the same guy I saw!

Could be, even if he had a pleasant manner and a fake smile. :-) I still felt an aura of dismissiveness.

I'm so sorry you are having to deal with all of this. It is so hard to not feel well and then have to deal with a dismissive dr on top of it all. I wouldn't hesitate to get another opinion. Starting with your PCP sounds like a great idea.

Keep a symptom journal. Also, take pictures or videos of unusual things if you can such as a muscle in spasm or odd swelling/redness, etc. These photos/videos can be valuable in addition to your symptom journal.

I know it's hard waiting for an answer. Many of us have been there. Hang in there and know that you will have an answer soon. I hope that soon you find a dr who will be in your court (in addition to your PCP) and will start doing something for you as opposed to dismissing you. Let us know how you are doing.

I saw my PCP yesterday and he still feels that my continuing problems are probably autoimmune, though he said it may even end up fibromyalgia that is way out of control. Though, the good news on that would be, we can get it under control.

I went and had more blood work done this morning and when it comes back he is going to send me to a rheumatologist and we will take it from there. In the meantime, he has started me on Cymbalta to try to help with the all over muscle pain. I talked to him about my brother (a retired Navy corpsman) telling me he thought it was only psychosomatic and my PCP told me to tell my brother to kiss my behind. He says there is no such thing as psychosomatic pain. God bless my PCP, it is not just in my head!

Just a follow up...All tests are in and it seems at this point that it is not autoimmune. My Primary care blindly tried a low dose Cymbalta and I briefly saw an improvement in my pain level. He has diagnosed me with Fibromyalgia and has increased my dose for the time being. Meds are limited as long as neuro has me on Topamax. Though my migraines have improved while I have been on the low dose of Cymbalta (who would have thought) LOL I don't see neuro for follow up until December.

Hugs to you all!