O-Bands and P100

[tcobrien]

I have a question re: next step for someone whom has 2 bands and p100 of 112.8/104.0  with polyneuropathy, tremor, diplopia with lateral gaze.  doc says it’s not MS?  Should I believe him?

[sllowe]

Hi there,

Adding on a thank you so much for coming back to us, and letting us know of your dx.

This shows how complicated the dx process is, why it takes so long sometimes and how many considerations there are.  

Hope you are in the good care with your Dr. and that you know the extent of what you are facing soon.  Do share this past years journey if you have the energy to do so. It will help many of us hold on and keep the faith.

-shell

[kmil1999]

Wow! What a long year.  I am glad you finally got a dx.  Thanks for the update.  I too am curious how you finally did get the dx.  Wishing you the best in your tx.  Karen

[Lulu54]

Tim,
I don't believe we met last year when you were here and I was new to this MS stuff as well.  I'm sure Q will appreciate knowing your dx.  I just did a look at CNS vasculitis and am wondering if you had a brain biopsy for the final diagnosis?  

Have they started treatment for you?  I would be curious to know more details if you are willing to share.

I'm glad you got a dx and now know what you are facing.

be well,
Lulu

[tcobrien]

Finally a DX - Vasculitis.. Still waiting to find out the extent of the disease, however interesting to see the overlap with CNS Vasculitis and MS symptoms!

Tim

[tcobrien]

Hey Quix -
Just an update; 3 Hour glucose challenge test was normal and protein electrophoresis normal.  My primary is consulting the clinic to see about other possible tests, I have requested a follow-up and/or a nerve biopsy to determine the origin of the neuropathy.  My fasciculation is increasing and are involving more muscle groups.  Any other suggestions of areas to look?

[tcobrien]

Hi Shelly-

I called the clinic today to ask about reccomendations on followups for the LP or VEP, still havent heard back..  I had my LP in June and didnt get the results until I call them last week. They never sent my Dr anything, so I assumed that it was all negative - well I guess 1 is negative - but it would be nice to know that I am in the ballpark for a recheck...  Oh well another lesson in - take charge of your own health care?

[sllowe]

Hi Tim,

I've not yet said hello, I don't believe, unless I did early on.  

After reading through this, if this were me, I would go for a 2nd opinion.

When was your LP?  

I'm with Doc Q, Tim.  You should be pointed in some direction here.  Clearly, you were left hanging here. Hope you are able to stick around.  

ttys,
Shelly

[tcobrien]

I never heard back from the Dr after the results of the 1 unique CSF Band, the last we talked and the last note in my file was before the Lyme test (negative) and O-Band results came in.  I noticed that the csf vs serum albumin ratio was high, do you know what this might mean?  

With the length of my symptoms and poly neuropathy should I request a repeat LP down the road?  Is one band enough to warrant repeat LP's?  Also if the VEP is towards the high end, is this something I should repeat at sometime in the future?  From what I gather Poly neuropathy is only taking place in the peripheral nerves not the CNS, so some other process must be taking place to register an inflammation in the CNS and nerve damage in the peripheral?

Everything I have been reading about the Gaze evoked Tinnitus, is referring to a plastic change in the auditory nerves.  How is yours, does it increase or decrease at times?  I also noticed the lateral gaze can also change the vibrations in my arms at times - by increasing intensity.  The Dr had no response to my complaint GET other than it was possibly due to my Scuba Diving :)

It’s really frustrating knowing something is not right and not getting any answers :(  

Hope all is well..  Thanks for your kindness and knowledge! I really appreciate you and this forum..

Tim

[Quixotic1]

Well, you do not officially have a positive CSF for O-Bands.  The reuqirement is that there are two or more "unique" bands found in the serum that are not seen in the serum.  This interpretation says that you have only one unique O-Band.  This can occsaionally be seen in normal people and people who have had a CNS infection.

The other result I would expect to see on the CSF is the IgG Index.  If that is elevated it is also a positive result.  Your "IgG - normal" is not clear as to what they are reporting.  Is it the total IgG, the IgG Synthesis Rate, or the IgG Index?

Monoclonal proteins are proteins produced in bulk by a clone of B lymphocytes.  These can indicate various neuropathies.  I don't know much about them.

To know what your glucose status really is they need to do a fasting glucose and/or a glucose tolerance test.

The Lyme Disease rule out is still important.

Quix

[tcobrien]

Thanks for remembering me :) - Here is the scoreboard...
I have never heard of the Protein panel he is ordering, does it ring a bell?
I Had all of the pressure points checked again today, still zero - so I keep throwing out Fibromyalgia..

Lyme ruled out
Brain, C-T-L spine all clean - except for multiple protrusions some of which touch the spinal cord (no signal abnormality)  
Blood Panel out of norm:
   Glucose 154 (After a 24oz Mountain Dew - just had LP - drank MD then had blood test)
CSF
  O Bands
     CSF 2
     Serum 1
     Interp  1
   IgG Normal
   Lympocytes Elevated @ 86
   Monocytes Low @ 14
   Proteins High @ 50
   Albumin high @ 31.50
SEP – Normal
VEP – Normal (L 104  R 112.8 Interocular Difference  8.8ms)  ‘the tested my good right eye many times before they got this reading – like they weren’t sure’
EMG – Bilateral medial plantar sensory responses were absent & fibrillations in R anterior tibialis otherwise normal (mild early polyneuropathy)
Autonomic Reflexes – normal
Recommendations for workup – blood sugar, monoclonal protein study, antibody studies for peripheral nerve antigens.
  

[Quixotic1]

Hi, Again.  This doc that says it's not MS; is that the Mayo Clinic doc in Scottsdale?

The findings you gave us are for a VEP which is within the normal range.  The 112msec is slightly prolonged, but most sources I have read look for a P100 of > 115msec.

The 2 Oligoclonal Bands in the CSF is a positive finding.

Okay, the doc says it's not MS.  Then what does he say it is?  What category of things is he suggesting that this could fall into?  

If someone is willing to say what it's not, they should be willing to help direct you to find out what it is.

In the past we know that you have neuro exam findings of a lesion in the spinal cord.  I gather your T-spine MRI was also negative along with the brain and C-spine?  Do you have the actual reports?

I'm not at all convinced that MS is ruled out.  You have obvious CNS disease with an immune inflammatory repsonse in the CSF.  And an officially positive LP for O-Bands.  The VEP is normal (possibly borderline in one eye).  You have asymmetric reflexes in the legs, +Babinski, clonus on the right.  You have the tremors. You have severe life-altering fatigue.

Has Lyme Disease been thoroughly ruled out with at least two negative Western Blot tests?

Quix