Quick update re LP

[SickMomma_PDX]

Hi everyone,

I had an LP way back on June 10, followed by a blood patch on June 16. I'm still playing phone tag with my neurologist, who left me voicemail saying "everything was fine" with my LP.

My internist was able to access the lab reports online and, sigh, only printed out one page for me, saying it would "take too long" to print out the eight or so separate labs that were done.

The one she printed out was the electrophoresis report, which said "the CSF protein electrophoresis exhibits gamma banding which is also present in the corresponding serum and is therefore not indicative of true CSF oligoclonal banding."

There's percentages of a variety of things listed on the page, but no reference ranges. I'm assuming they're all normal or someone would have said something.

In unrelated but somewhat interesting testing, my blood apparently is taking a LONG time to clot. An APTT done June 4 was 70.2 seconds to clot, when normal is 22-35 seconds. I got referred back to my hematologist, who ordered a repeat of the APTT and a bunch of other tests. I'm waiting for a callback from him as well, but the nurse (who couldn't release the test results to me) said the repeat of the APTT "confirmed your blood is thin." The other tests apparently were for autoimmune coagulant something-or-other. I'll get more detail when I actually get the results.

Anyway, I'm not sure what happened but I stopped getting email updates of what posts had been made a week or so ago, and I guess I forgot to check in without that reminder. I kept thinking of y'all when I was going to sleep, but I'd forget whenever I got online. So I'm glad I found my way back to y'all -- I missed you! :-)

Hope everyone is having a good week!

[SickMomma_PDX]

Wow, Sho! Thanks for those links and that information! I'm definitely printing these out to take to my doctors!

LL: I'm glad you have a good hematologist! Good docs make all the difference in the world! I'm sure s/he will monitor you regularly and keep on top of it. I remember being all freaked when I first heard I had the monoclonal antibodies, but that's because I was convinced it meant I had multiple myeloma. Thank goodness it didn't!! :-)

[lala47]

Hi, my numbers are also very low.  My hemologist is wonderful.  I go back in Dec.  repeat blood work and have met bone scan.  If all is OK check every year.  If levels have increased then bone marrow biopsey ( I know that is spelled wrong  sorry), I am not real concerned about it.  

Thanks,
lala
LL

[shoshin]

PS I'm not getting any notifications either. What's up with that?

[shoshin]

That might actually be good news in terms of getting an answer for your problems. Antiphospholipid syndrome (also known as Hughes syndrome) is a known mimic of MS that often isn't tested for. Cardiolipin and lupus anticoagulant antibodies seem to be the same thing.

"The antiphospholipid syndrome Is a disorder of the immune system that is characterized by excessive clotting of blood and/or certain complications of pregnancy (premature miscarriages, unexplained fetal death, or premature birth) and the presence of antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies) in the blood. Patients with antiphospholipid syndrome have developed abnormal symptoms while having antiphospholipid antibodies that are detectable with blood testing." (http://www.medicinenet.com/antiphospholipid_syndrome/article.htm)

Apparently it is mostly treated with blood thinners.

Here's another article about people with antiphospholipid syndrome being misdiagnosed with MS that might be of interest to you: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736

sho

[SickMomma_PDX]

Thanks for all the feedback, everyone!!

I don't know what's up, but I'm still not receiving notifications and I really really want to. I checked my preferences, and it's set to send me notices of stuff on my watch list, etc., but it's definitely not happening. :-(

So I still haven't connected with my neurologist. Sigh. I have an appointment with her in late July if I can't connect before that, but I'm flaring and the pricklies are back big time and worse than ever, so I plan to make a pest of myself next week.

I spoke to my hematologist. Turns out, I clot just fine even though my APTT is way high. I tested positive for something called lupus anticoagulant, a misnomer for something which I guess is sometimes related to anti-phospholipid syndrome, which ironically means that I'm actually at risk of blood clots, not bleeding out!! Weird, eh? I need to call him back too and make sure he knows of my series of miscarriages, which apparently can be caused by this or might be totally unrelated. I'm also positive on anti-Cardiolipin IgM and sometimes also IgG. FWIW.

Thanks for the encouragement to pursue getting full results of my LP labs. In my internist's (weak) defense, the problem wasn't the printing so much that each of the 8 files had to be opened individually, told to print, etc. But yeah, pretty lame of her not to print them all for me, especially since I'm constantly bringing her copies of labs done elsewhere that the specialists don't always send full reports to her.

LL: As far as I can tell, MGUS is not much to worry about. We have a slightly increased chance of developing multiple myeloma, but really as far as I can tell, all it means is that we get monitored a little more closely to make sure our numbers don't suddenly change. I don't know about you, but my numbers are pretty low.

Thanks, everyone!!

[Fluffysmom]

Hi; I can't believe that I've been so tired I haven't posted here yet!  I remember thinking about it...

I know nothing about MGUS, though now I'm curious and will have to google it.

If you haven't done so already, fill out a release of information form requesting the full results of your LP from the lab, and deliver it to your neuro.  It wouldn't hurt to request copies of your neuro's chart and clinical notes, either.

When you mentioned the thin blood, something called Von Willebrand factor; something that Quix mentioned to me when we were discussing the fact that I'm and "easy bleeder".  I think there is a hereditary component, and there are several types and degrees of how it interferes with clotting.  i think there is a specific test for it.

I picked up a flier at my PCPs office yesterday that said that you should always get your test results from the lab; even check to see if the lab is reputable.  It said that "one study showed that anywhere from 10 % to 30% of PAP smear test results that were called "normal" were not".

You can see the flier and a lot more at www.ahrq.gov

Anyway, I'm glad to see you back, too.  For quite a while I wasn't receiving notifications, so I missed a lot of posts, stumbled across some of them while wandering around, lonely (lol!), etc.  They finally fixed it, and I got about 50 notifications all at once; looked funny!

Take care,

kathy

[sllowe]

Whaddaya mean you forgot us!!!!!!!!!! LOL, only kidding.

Glad you made it back to us.  And, that you are seeing your hematologist.

BUT, that office not wanting to print the rest of the 8 or so pages is bunk! Even an old dot matrix could spit out 8 pages in fair time! Hmpf!

Well, I guess if you have to wait for the neuro for the full report, so be it. But, hoping for you that you connect, and soon.

ttys,
shell

[lala47]

Hi, I am being "watch" for MS, and I have not had an LP yet.  I have just recently been dx with MGUS.  Any information that you find out please post.  As I am in no hurry to have an LP it may be in my future.  I have wondered if the MGUS might mess with LP results.

Thanks,
lala
LL

[kmil1999]

You can never ***-u-me that your tests are normal.  See shoshin's post earlier.  It was about the US news and world report.  Karen

[Lulu54]

HI SM,
I have a great website for any and all quesitons about lab tests....

go to
labtestsonline.org

there is a place where you can submit a question and a true lab scientist will respond.  They have answered me and several other people here when we have sent questions.

The should be able to explain gamma banding....

be well,
Lulu

[SickMomma_PDX]

Hi Julie,

Thanks! I will definitely keep asking for the full results on paper. My internist thought the gamma banding was related to my MGUS (monoclonal gammopathy of undetermined significance) but wasn't sure.

If anyone else is around (Quix? Anyone else?) who is familiar with the gamma banding and what its significance is, I'd appreciate it!

[Sarahsmom46]

Well my dear, the results you have so far in writing are just not telling the tale of what is going on in your CNS.  Keep on top of the neuro for the reulsts, hopefully you guys will connect soon as this must be driving you nuts.  

I wouldn't assume that everything is fine with the LP results until you see them in their entirety.  If you can remember to ask the neuro when he calls for a copy of the results to be sent to you, then we can all pitch in and sort out what the results mean.  Hopefully it is good news, but again the report on the O-bands sounds like you did have one or more.  Even if they were in the serum sample as well, there has to be an explanation for why that occurred.  

In the meantime, keep plugging away until you get your answers as it sounds like you have a couple of things going on here.  

Take good care and thanks for sharing your news with us.  

Julie