Getting Tested

[1Wife2Mom]

Does anyone know what it means if the CSF shows oligoclonal bands results as H?

[Lulu54]

I know nothing about Barnes, but don't hear much good about Mayo's MS work.  If I had a heart or cancer problem I would consider going there, but not with MS.  I'm sorry I can't add to the background knowledge here.

[rendean]

We have a saying here on the forum, "Hold the Mayo" since they diagnose strictly by the McDonald criteria and are unwavering about it. I  assuming Barnes is Barnes Jewish Hospital.

I don't know what their experience is with MS. Anybody out there have any info????????????????????

I would go see someone for a second opinion as well, the trick is to make that 2nd opinion appointment with a facility who deals with MS on a regular basis.

Hopefully, someone will come along with some info about Barnes or perhaps somewhere else where they have success.

Keep us posted,
Ren

[1Wife2Mom]

The neurologist said I have oligoclonal bands in my csf and a negative MRI. My ANA is 1:40.  After ruling out lymes, RA, lupus, and sarcoidosis, she is concerned that she is unable to completely rule out MS and wants me to get a second opinion at Barnes or Mayo.  Anyone with an opinion????  She was very sweet and kind but says she has exhausted her thoughts and would want a second opinion herself if she had my symptoms.

[twopack]

Good luck with the Monday appointment.  Let us know how it goes with the explanations and the new questions you are sure to have then.

Mary

[Lulu54]

You are not crazy, and don't let any doctor make you feel that way.  You know what is normal for your body and it definitely sounds like you have lots going on.  

Besides the LP. have you also had an MRI?  Be sure to take a written list of questions you want to ask tomorrow - it is so hard to remember everything when you are under this kind of pressure.  

Be sure to come back and let us know how it goes and if you have other questions.  There is a lot to absorb when you are dealing with neurology and neurologists.

good luck,
Lulu

[1Wife2Mom]

Thank you.  Guess I will find out tomorrow at the neurologist for sure.  I am a female, 39 years old and have lots of symptoms for 2 years now but all seem minor except when you put them all together.  Have ruled out Diabetes, RA, Lupus, and Lymes.  Arrrrghhh...  Iam tired of recurrent yeast infections, UTIs, fatigue, and generally more sick feeling more often than I have ever been.  Have had trigeminal nueralgia once for a few days with one eye blurry and loss of color vision in that eye for a little while.  Have had weird buzzing sensations in my deep muscles or bones sporatically over the last 2 years.  That alone made me feel like I was a little crazy when I was trying to explain to my doctor.  Thank you for any input.

[Lulu54]

Hello. Most lab tests marked H mean the number is higher than the normal range.  In oligoclonal bands, the number has to be referenced in comparison to the oligoclonal  bands in the blood serum.  I hope they did that sample draw at the same time the lp was performed.

The number is only used as supporting evidence in diagnosing MS and doesn't prove it one way or another. They are looking to see if the o-bands count is higher in the CSF than in the blood.

Feel free to come back and ask questions or share more of your story.

be well,
Lulu