OKAY!! That's it....I'm confused now!!
 

I remembered something when I saw my PCP the other day. He asked about my LP and I told him what my Neuro said. The ONLY thing that was said about it was that "My proteins were a bit high, but okay".

WHAT DOES THAT MEAN?

So, just now I googled this:

http://www.bchealthguide.org/kbase/t...63/results.htm

Under "abnormal results" it says:

Protein:
A high level of protein may be caused by bleeding in the CSF, a tumour or spread of a cancer from another area of the body, diabetes, infection, injury, Guillain-Barré syndrome, severe hypothyroidism, or other nerve diseases. An increase in antibodies (immunoglobulins) may be caused by inflammation in people who have multiple sclerosis, immune system disorders, or other bacterial and viral diseases.

EDIT: Can someone explain the antibodies part of the statement? Oh, where's jensaquitur when you need her? LOL!!


Any of you who know anything...please respond! (I swear they are going to MAKE me nuts!)

Welcome back to Limbo Land :D
Sorry but high protein IS a sign of MS as well as all the other things you listed.
Was your RBC count?
Myelin Basic Protein?
IgG rate?
IgG Index?
I'm guessing there was No Bands seen?

I didnt know increased proteins were a sign of MS...

*grabbing file of medical records to see if they ever checked my proteins*

BTW, Mine was only 24.1, normal range is 13.0-40.0.

The same website says this:

The normal protein content of CSF in an adult's lower back (lumbar) region is 55 milligrams per decilitre (mg/dL) or less. Older adults and children may have higher values (up to 70 mg/dL) that are still in the normal range.


Are you sure?

Greenjeans, did your doctor ever mention oligoclonal bands (o-bands)?

The CSF of people with MS usually contains elevated levels of IgG antibodies as well as a specific group of proteins called oligoclonal bands. Occasionally there are also certain proteins that are the breakdown products of myelin. These findings indicate an abnormal autoimmune response within the central nervous system, meaning that the body is producing an immune response against itself.
http://www.nationalmssociety.org/sit...sourcebook_csf


I had high protein and the o-bands when my LP was done in 1986.

Thanks snoopy...so you are saying that the high protein needs to include these o-bands? Could this be an indicator of the beginning of MS?

I'll go read the link you gave me...thanks!!!


PS: No, he didn't mention any bands.....getting my test results...I'll report as soon as I have them!!

Well not everyone that has MS has o-bands in the CSF.

More that causes alarm for me

http://jnnp.bmj.com/cgi/content/abstract/64/3/402


I just left a message with my Neuro's Nurse....getting to the bottom of this!

Just called the hospital to email my test results....

That's true. I believe 10 to 15 percent diagnosed with MS have had negative LPs. The LP is just one more diagnostic tool to hopefully find answers to a patients symptoms.

I think I found 5%....but anyway....if you read the last link...seems they believe that higher levels of protein are cause for concern that the patient has RRMS. Which is what I 'thought' I had......

Oh for heavens sake!!!!!!!!! :icon_rolleyes:

Okay, now lets talk about MRI's....Where do lesions BELONG? I'll go get my test results and look over where mine is....

THANKS SNOOPY!!

Here's the question I'd be asking: Can you have no O bands, but high protien with ms?

Or does high protien alone (no O bands) point to something else?

Either way, I'm not too happy with your neuro not telling you that info and passing to the other docs.

BTW, my lp showed no O bands and had normal protien levels. That's why I wondered if there would need to be both. I always thought there kind of would.

Good luck. And let us know.

My ears were burning... :wink: I don't remember much about my LP, unfortunately. I need to write this stuff down. Since it was the least interesting of my tests (whole bunch of numbers!) I put it in a drawer and forgot about it.

I don't remember who told me this, but somebody said that if you do have o-bands, it's one o-band per virus that's sneaked past the blood-brain barrier. They'll show up when you're having an inflammatory attack, and subside when you're in remission.

Here is what my MRI says: (pared down to talk only about the lesion)

Result: "There is a single 5 mm diameter focus of T2 hyperintensity in subcortical white matter of the left frontal lobe.

Impression: There is a single small nonspecific focus of white matter signal abnormality. Although MS cannot be excluded, the size location, and morphology of the lesion are not particularly suspicious for demyelinating disease and could represent a benign idopathic white matter lesion.


In addition to this, my Optho/Neuro who ordered the MRI (Who is world renowned and spoke at the MS convetion last fall) pointed out a second lesion.

Maybe I should get a second opinion from him?

LOL @ your burning ears!!!

So you are saying that when the flair has subsided, which mine had by the time I had the LP, that my fluid may have returned to 'normal'?

Any news Erin? :cool:

Did you see my second link? Seems so??????

I dont see anything in my records. But, is this only in relation to an LP? If that's the case, I wouldnt have this in my records...never got the LP, neuro said that I didnt need it

Hi J! I was dx with a negative lp (I guess he meant for o-bands?) but my neuro did say that I had abnormally high protein levels.

I have no idea what any of what I just typed actually means :D:D though!!

I can't believe all this!!!

DH I think is worried that I'm back on the 'band wagon'.....

What do you all think about a second opinion from my Optho/Neuro?

PS: WE HAVE NO MS SPECIALISTS IN ALASKA!

I know that when my DS goes for his Renal (kidney) check up, they check to make sure his protein levels aren't elevated. Guess there could be many causes.. But, higher protein levels in the urine could indicate something amiss w/the kidneys.

Let us know what you find out, K???

I think you should get an 2nd opinion.
What about everything else on the LP?

I'd go for it. 2nd opinions, 3rds, 4ths, whatever it takes. Go for it. I'd HAVE to know, you know?

Now deep breath, okay?

If the protien isn't high due to ms, I'd still wnat to know what that was about. I'd need answers which ever way.


Re the lesion, I am skeptic whenever someone says they are not typical - so what is typical of this atypical disease? 2 lesions warrent follow up, IMHO.

Thanks Brain,
I called my Optho/Neuro's office and he is in surgery until this afternoon, so they want me to get him my LP results, and if he is comfortable with it, they will have me come in for a second opinion.

I think at minimum, this is required, now that I am connecting this....

They say not to dx yourself (and I won't) but really....they would miss things if it weren't for me giving a S about myself :rolleyes:

Oh I hear you, What is it with MS that Dr.'s need you to have 20 lesion (all in the right place), + LP and be in a full blown flare before a Dr. can openly say "You have MS"?

I don't understand how something, anything can be off on any test and the Dr doesn't feel the like he/she should tell you what that could mean.

momx7, I hear ya.

I suspect it will be tomorrow before I have my LP results, unless I go get them...:OuttaHere: is what I'm thinking ;)

I'll keep you all posted on this new development. It will probably turn out to be nothing :o But we shall see.....

Anymore folks with knowledge are free to add to whats already been said, or offer opinions....

Hey Joelle,
I sent you a PM :D

Talk to ya later :hug:

Ooops! I got the number wrong :o

Your welcome!

Todays final update:

Optho/Neuro's office has received my LP results and will confer with the Doctor when he gets in from surgery. (This doc is sooo cute :) ) They will get in touch, one way or the other about a second opinion, or give me a referral....either way...this one on the shelf until more info is available.

x another one off my list :D

thats what I said when my neuro told me that I have 4 o bands,and thats to high for it to be ms. what the He77 is that suppose to mean. I got to exlpaination from her. But on a tread on msw,alot of ppl have 4 O bands,and dx with ms.
I sware too that she is tring to make me nuts!!!!

I love it when the doctor turns out to be cute and adorable. I'm going to the doctor tomorrow and darnit if the cute one's day off is tomorrow...I have to see the other doctor, which is ok, because he's not hard on the eyes either, but I want the cuter one!!! :mad: The cuter doctor is just total eye candy. I almost always feel better after seeing him.

LOL!! My DD18 saw an ER doc a few weeks ago, and her jaw dropped as he walked in (so did MINE!). She just batted her eyes at him, smiled, and told him that her ears hurt. As he used the stethoscope, I could tell her heart was going to come out of her chest. After he left, she just looked at me and said WOW!!! So glad I'm going to be a doctor so I can get me one of those!!!

Cute makes everything better!!!

Her ears are much better now :)

GJ, I am so sorry you're going through all of this. I really don't have any advise or suggestions. I was diagnosed without an LP and have never had one done.

My MRI was suggestive of a demyelinating disease and I had symptoms that corresponded with those of MS. All other possibilities were ruled out via blood tests, exams, referrals, etc.

I am very cautious about where I get my information from on the internet though. Some sites are not as good as others. Please, keep that in mind when researching.

As for the O bands as well as lesions, I know a simple virus can cause both but not be MS at all. Additionally, migraines can cause lesions.

There is nothing wrong with asking for a 2nd opinion. Please let us know how it goes. Take a deep breath and try to relax. (easier said than done, I know, but try).

Thanks tk,
I'm staying the course as outlined last week...this is just having my Optho/Neuro look at the LP with the raised proteins (not alot of choices here!)...and it occures to me that my new PCP will see the results too and I see him in two weeks. Like I said, its probably nothing :) Crossing it off the list makes sense if nothing else.

The Lexapro is working really well! I've been in a really good mood and ready to do the therapy...and school is going really well!

I appreciate your concern and I hear you!! :hug: Thanks!!!!