Very confused..MS or not?

[Gina376]

May of 2012 I had an MRI of the brain because of numbness and tingling in my arms and legs, memory and cognitive problems, and fatigue. The MRI showed "Fairly extensive areas of increased FLAIR signal in bilateral centrum semiovale, subcortical, and periventricular white matter. A few of these are oriented perpendicular to the lateral ventricles. There is also, abnormal FLAIR signal noted at the callososeptal interface both at the level of the rostrum and splenium as well as increased punctate abnormal FLAIR signal noted in the body of both right and left corpus callosum. Given these findings, the possibility of a demyelinating process, such as multiple sclerosis, is high in the differential." So, then I had an MRI of both the neck and spine which were normal. I also had a lumbar puncture which showed 3 oligoclonal bands in CSF and no bands present in serum. Still, I do not have a diagnosis of MS. I do not get it. Comment on neurologist report says "Given the patient's symptomatology, as well as the abnormal findings on the MRI, I do raise the possibility of multiple sclerosis even though her spinal fluid is normal, except for 3 oligoclonal bands." So, the question is, do I have MS or do I not?? So confused. How is the CSF fluid normal is it contains 3 oligoclonal bands and none is the serum??

[Gina376]

Thank you all for your replies and suggestions.

[TheLightSeeker]

Hi Gina.

If were you not tested by an LLMD and not used IGeneX Labs for a complete Borellia and Co-infections Panel, there's a good chance that you cannot rule out these infectious conditions as there are too many false negatives returned.
Please re-read my previous reply.
You may also check at the Lyme's Disease community.
There are a lot of "seasoned" members there, who will give you lot's of useful  & accurate information, much more than most conventional doctors.

Wishing you well.
Niko

[Gina376]

I was tested for Lyme and it was negative. Also tested for Lupus which was negative.

[nutrinut_bob]

WI was also one of the states with the contaminated vaccines.  The Govt is trying to claim SV40 doesn't cause cancer, but seems they've not mentioned what it else it might do.  It likes glial cells.

[TheLightSeeker]

Perhaps your geographical connection  with WI should be indeed looked into , instead then.
"Ehrlichia Wisconsin HM543746" could be also explored, being more specific to WI and fairly new, which may be a cause for concern, as  doctors might not know to look for Ehrlichia infections, since Human Ehrilichiosis has been extremely rare in Wisconsin up to now.
Due to the increase of deer ticks, this tick borne infection ( common lyme co-infections include ehrlichia, bartonella, babesia and others ) may be on the rise in Wisconsin. ( Memory of having a tick bite is NOT a criterion )
The problem with diagnosis and consequently appropriate treatment,
is that the vast majority of physicians follow CDC and IDSA guidelines,
which are unfortunately missing the target, leaving a significant percentage of Lyme, Ehrilichiosis and other co-infections sufferers undiagnosed or worse misdiagnosed.
Once the progression of these infections continues without specific treatment, the long term risk is the serious organ and system involvement  with potentially irreversible consequences.
My opinion also is, if you choose to pursue this, to find an LLMD for a second opinion (LLMDs are usually more experienced in these infectious conditions and do not necessarily follow the CDC/IDSA  guidelines)  

This being fairly new, I don't know if there's enough information out there in regards to O-band in only CSF and "Ehrlichia Wisconsin HM543746" diagnosis.
Niko

[Gina376]

I have only lived in TN for 2 months. I was born and lived in WI up until 2 months ago.
Thank you, though, for the input.
Gina

[nutrinut_bob]

You are near the age that SV40 could be a possible suspect.  Tennessee was one of the states that received the contaminated polio vaccines.  They love to live in neural tissue.  I am a few years older than you, certainly know I got the Salk vaccine, and I'm losing a lot of my childhood friends.

[TheLightSeeker]

Hi Gina376.

Three oligoclonal bands only in cfs fluid and not in serum , is not necessarily consistent just with MS , as the jury is still out on this one.
Some studies show that a higher number is (is 3 higher and indicative of MS and 2 is not?) and some other studies disprove it!!! Confusing to say the least! And since there are no other details included in regards to your
CSF, I'm with your Neurologist on this one.

The problem is that in at least 10% of patients with 2 or more OBs do not have MS, therefore the test is not conclusive!
It's just like in law and justice. You cannot be 90% guilty and get convicted.

Have you had at least 2 relapses, separated by a minimum of one month?
This is one of the fundamental rules for MS dx.
The other rule is at least 2 brain or spinal cord lesions.

MS diagnosis is complex and there are various types and categories.
Categories:
Negative
Possible
Probable. Your diagnosis should be here according to the info in your post.
Definite

Types:
Relapsing-Remitting    
Primary-Progressive
Secondary-Progressive
Progressive-Relapsing

Hope this helps, but please note that this is not a substitute for medical advice.

Best wishes.
Niko